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Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

Spinal stenosis
Feb 16, 2011
about four years ago i visited my gp because of pain in my neck and arms i was sent to a neuro surgeon and after mri scans i was told i had nerve damage and crushed discs in my neck,i refused surgery because of other problems, after a while i started getting really bad pain in my lower back while doing housework and would have to rest, the pain would go away but return once i carried on. Eventually this became more frequent and began happening when i was out walking anywhere if i tried to carry on the pain became unbearable screaming at me to stop and i often ended up crying with pain and embarresment, docs kept saying it was muscular this went on for over a year until a new gp said spinal stenosisand sent me back to the surgeon without xrays or scans he agreed with the gp. i am now in a wheelchair most of the time but still not sure about my condition i suffer badly with pains in my legs but as i have high bp am not sure wether they are vascular and i;m no nearer to an answer.....fed up....mojack
Re: Spinal stenosis
Feb 19, 2011
i am just a wee bit confused here. according to what you said showed up upon your actual MRI had to do with actual nerve damage AND al;so actual crushed discs? but further down they think this is all a 'muscular" type of issue?? thats where i am confused. do YOU personally have your own copy of that MRI report from four years ago where it states ALL pertinent findings? if not, get one now from your ordering doc who sent you for this to just read thru yourself, and just so YOU have your very own copies of any and all testing too. then keep doing this with any further types of possible testing as well.

have you had ANY other follow up MRIs done since that four year old one? even in as little as six months with certain types of findings, things CAN definitely change with the overall landscape of the full spinal and down to your cord too. so four looong years can seriously create progression of symptoms and damage too. why exactly are you in a wheelchair? weakness or pain or outright instability of your legs that you HAVE to be in one at all? if there just were back four years ago ANYTHING actually impacting your spinal cord, or even over these past fours years there now or could have progressed towards it, that would be highly likely considering just specific types of findings and crushed discs too?

just what or how did they gage your stenosis if you did not have any actual even x rays that would show that? was this off the old MRI or what? this is all just a bit confusing to try and really understand how this all just is for you. you CAN have stenosis around the actual nerve roots themselves that would definitely, if impinged enough create pain. but you can also have stenosis within the actual spinal canal that surrounds your spinal cord too that can do the very same thing, impinge upon the cord itself too. exactly why did you refuse surgery four years ago if i may ask? just wondering with the discs being the way they were then, and how things have progressed so badly to the point the extreme pain and instability you are dealing with now,and were feeling up to this point along the way?

from what you are describing, it seriously does not sound like 'just stenosis(depending upon where they were referring to exactly within the spinal levels) or just 'muscular" or vascular ALONE. it really sounds like some very real progression of what was already found on that MRI done way four years ago that is all 'presenting" its own way now in you. while you CAN have all that stuff i just mentioned, certain underlying causes seriously need to be ruled in or out as the real underlying generators of the symptoms you are having too.

it just sounds like your body is really trying to tell you something like obtain a follow up MRI and with a contrasting agent too to better highlight newer symptoms from the older ones as well? and if there could be anything vascular stemming from above, it would also highlight certain vascular structures too. i personally have a pretty solid bunch of seperate spinal cord injuries from having a surgery done to remove a glob out of my spinal cord up at c 8 nerve level, and my vasomotor is now in malfunction/damaged which effects how my blood runs thru vessels now, mostly within my legs? this just can come from spinal cord injury or damage. for you right now, you just seriously NEED to have another MRI more than anything else FIRST. just to fully 'see' what IS going on in your c spine levels that seriously CAN impact the lower parts of our bodies depending upon any impact to your actual spinal cord. that would be what i would be most concerned about right now for you just considering what you had there four years ago at all? and where you are actually just 'at' right now, in a wheelchair.

they CAN do whats called a doppler ultrasound right ON both of your legs to check within all the major vessels to see how they just 'are' at this point too if needed. i have had that done before myself. this does also check 'flow velocity" when they use that doppler tool too. this type of ultrasounbd really does tell/show alot about the actual vessels themselves.

i would also really consider seeing a totally different neurosurgeon too and not the one you were seeing, just to get a totally fresh pair of eyes on BOTH of the old and the newer MRIs together? it would appear here that between your gp and the other NS you have now, they think this is "only' stenosis? unless they are actually finally seeing this like i mentioned above, in your actual canal levels somewhere, it would NOT explain the real full impact you are feeling now at all. it wouldn't huirt to also have this new MRI done litterally from the very top in the c spine and all the way down into your lumbar and s spine levels too. something very easily could be wrong in the lower levels of your spinal when just considering what WAS/IS currently in the upper level alone?

i would just tell your doc you NEED this done and to do it full spinal at this point(esp since you stated you are also just "fed up" at this point). you just DO really deserve to know how your spinal actually is considering your current situation hon. "something' put you into that wheelchair that definitely HAS to be found and since that whole spinal can govern what goes on below within our legs depending upon impact. any level could realistically 'be the area of impact" here too and do the very same things to legs. and that c spine just has to get another looksee too. its just been four years now and nothing has gotten better for you, just progression to the worst. and you deserve better care from your docs too.

i DO hope you can get that whole spinal checked out with a good contrasted MRI right now. this more than likely will continue to really get MUCH worse here if the true areas of involvement are not finally found out and intervened upon soon. esp if anything just IS impacting your actual spinal cord here. please let me know how you are doing mojack. marcia
Re: Spinal stenosis
Feb 19, 2011
Hi, Marcia firstly i;d like to say thanks for your reply,it feels good just to know someones listened. Here in the uk nhs they don;t give you cpies of anything or tell you much either ,to get anywhere you have to go through your gp.The reason i first refused surgery was because of the horror stories i;d heard so mainly fear i suppose,i;m not a coward i;ve had cesaerians and surgery on my arm its just the spine thing.The reason i have a wheelchair is if i go out i don;t get very far before the pain stops me in my tracks and i really can;t get any further,but i hate the wheelchair so much i just stopped going out unless i have to.I saw my gp two weeks ago and told him i;d started pain in my legs and also started getting migraines and muscle spasms in my stomach,Guess what ?he told me to drink soda water as it contains quinine lol.I;m on bupronorphine patches but there not as effective as they were at first.I;m really worried about my situation as things are getting worse and i;m going to see him again soon and asking outright for an MRI,actually i think i;ve been fobbed off because i refused surgery once but i don;t think this is fair because what if it isn;t spinal stenosis but something worse not knowing for sure is awfully frustrating. I;ve read everything i can find on stenosis,but my symptoms don;t all match up to other peoples i don;t get the pain down my leg for one. I;ve done all i can too pain killers physio etc i was told when i went to physio the first time over my neck that if i couldn;t pass water or got pins and needles down my arm to go straight to a and e but they;ve diagnosed my lower back pain without any evidence from mri etc so i;m in a limbo.I;m not a misery guts i;m a young 55 who likes a good laugh and enjoy life i;ve six grown up kids but my qaulity of life is rubbish now i just try to grin and bear it so grateful you took the time to write Marcia and i;ll keep you informed....Marie
Re: Spinal stenosis
Feb 20, 2011
marie, while believe me, i can soo totally understand the hesitency behind even going the surgical route, you simply ALSO have to look at what your overall quality of life currently just "is' here too? in your own words, 'its rubbish'? when it comes to any surgery, let alone anything spinal, it IS a scarey lil venture and for good reason, but there IS that flipside here too that maybe four years ago, this did not want to be the the "choice" you made going the surgical route, but marie, just look at what this all has progressed to right now, today? while not chosing any surgery, that IS your right hon, but you also have to weigh true pros and cons with any surgery for YOU too NOW vs then when you were actually more functional and life was simply a bit more 'normal" vs now too. but you unfortunetly are NOT, just what you even were that four years ago, anywhere NEAR where you are now marie, and THAT IS sooo very important and very relevent to ANY potential 'decisions' you could make today/now.

basically, what do YOU truely WANT in your life right now ya know? that IS the most critical and important thing right now, not just for you but your family and the potential grandbabies who might be coming along too if not already, you stated you love a good laugh(believe me the sense of humor IS what keeps me goin here too) and also just love to 'enjoy or have fun with life", ya know what i mean? are you seriously even "doing that' at this point, or are you suffering in that wheelchair and not even able to simply 'do" alot of the things that once gave you such a true sense of joy and purpose in your life at this point? THAT just IS what you have to truely look at in order to really think about what is the best thing for you, right now, in this stage you have been forced to end up in too?

marie, i personally lost sooo much of 'me" and who i was and what i 'used to be able to do"(including a job that GAVE ME so much as a firefighter/emt for at that time around 15 years) that truely gave me absolute joy and a really true sense of purpose back in 2003. not with a spinal surgery like my two anterior approach with the intital being my ACDF for my herniated disc, then needing hardware to help fuse nine months later. i DID recover from that and still was able to just 'do" for my family, my job and for me. i was still able to be spontaneuos too and did what i wanted when i wanted. then my whole world was totally turned upside down when this glob of blood vessels i had been born with right smack inside my sp cord just 'showed itself" upon that initial MRI to find my herniated disc somewhere up in my c spine(did NOT have a freaking clue it was even there til that ONE single and first ever MRI showed it oh soo clearly back in 2001)? that lil sucker was just 'there' and pretty much right underneath the level of the herniation too, but IN my cord. i did not in any way shape or form 'want to' have the resection surgery to remove this sucker, but i kinda had to before it decided to bleed again and totally paralyze me from my upper chest on down. that was the surgery that obliteratted my spinal cord and took EVERYTHING in my life that held any real sense of purspose and true pure joy for me anymore. it also knocked out the L leg and hand too. and that part i KNEW was going to be 'hit' since those particular nerves were just 'in the way' to even GET to this huge glob that was taking up ALOT of actual cord space. but if i did not do this, i WOULD as we speak here, be in a wheelchair needing everyone to simply take care of me right now. i thank the good lord above that with being sent to an amazing acute rehab facility/hosp, that i DID regain that L leg, it just hss some 'leftover" spinal injury showing, and some of my L hand. but that hand lost 8 fine motor muscles that never came back(it was that legs thing and the fine motor loses that i DID get told would definitely occur pre op, my NS just could not begin to even tell me just how bad/much it was actually going to be becasue of soo many different factors), hence the lovely typing here, lol? but i DO KNOW it could have been ten times worse here too for me. but i have to live with alll the flippin seperate areas in my cord being damaged. that part SUCKS.

but the vewry very risky decision to EVEN think of going the surgical route and get that sucker out before it bled again on me and would have paralyzed me from just below my breasts on down was horrid. and oh soo agonizing it took me three weeks of no sleep, not eating and only thinking about THAT scarey decision to finally decide to do it, mostly because my really amazing and lucky for me, over thirty years of experience knowledgable NS told me another bleed was going to come, just highly unpredictable with what i had in there. and i also looked VERY hard at what MY actual "trade offs were too. those potential pros and the cons of even doing this to myself and what would 'be' for me. alot of potential collateral damage was going to occur in there too, he just would not know that aprt til he got into the area and things played out.

BUT, we are NOT talking THAT level of surgery for you marie, more than likely more 'structural" and outside the cord area not "inside" it like mine was at all. you just seriously do NOT want to end up being much more incapacitated becasue of possible fears and allowing this to go on anymore than it has. i just feel that you HAVE suffered more than long enough with this and DO deserve a much better happier life. don't you? and REALLY just think about how you were and how you just are right now hon.

any muscle atrophy that may have also come since you have just been in that wheelchair at all and not 'constantly" thru out your day anymore simply 'using' all of the good solid muscles esp in your legs, CAN be rehabbed back too with a good PT program once you are able as well. trust me marie, if i can get back what was knocked out during a surgery that HIT my leg nerves and knocked out a total and complete leg at the inner cord level, you CAN regain any atrophy that comes with not using legs enough. it all just takes alot of hard work and the appropriate therepy to do it.

but right now we do NOT even know exactly how bad your spinal levels damage or structual integrity is or if anything is even impacting your spinal cord at this point. and THAT just HAS TO be known now in order to really just find out true extent of damage/involvement ALLLL along the whole spinal given your symptoms and the way this crap just tends to progress itself over time. and you ARE very right in that 'just' stenosis would NOT do to you what has been occuring(it seriously would HAVE to be there at many many levels) ONLY IF this stenosed area is within the actual spinal canal would or could the full impact you have been suffering with is even a factor. and this is all the bigger 'why' in the absolute 'need' for the full spinal MRI to be done, just to even see what it actually just 'is' you have in there, then what can be done to help you regain at least a good, less painful and more mobile quality of life. i just really do feel you are AT the "time" here where if you do nothing, things WILL progress to worse. but by at least attempting(you take that leap of faith) to fix and stop or take away the things that are progressive would at least stop things from getting to what just has the potential always when spinal, to get much worse for you marie.

i really cannot understand the 'why" you were told that you cannot even obtain your own medical records?? that, even in your country really just does not at all even "sound right" to me? i do know there are other posters here,actually alot, that DO obtain their own records and also live at least kind of where you DO too? i cannot imagine any really good reason as to 'why' this would be forbibben since they just ARE YOUR own medical records?? i would seriously find out from your dept of health or any 'governing body" similar over there who oversees a patients rights right where you live and find out just EXACTLY what that deal just 'is'. something just does not sound at all right about this type of practice AT ALL to me.

just exactly did the NS tell you four years ago that your surgery would consist of if you chose that route? was this a probably larger type of ACDF where they would have removed the damaged discs then either placed a bone graft in between each vertebrae where they removed the disc or some type of an artifical disc then fuse type thing or what? that much i would really like to know. just what 'their plan' actually was for you that you decided not to go with. it would help if you could recall that. depending upon just what the surgeon wanted to do in there would kind of help me to better understand the true level of damage that was there back then and was on your MRI too.

right now i would FIRST work on getting that MRI done since it IS very MUCH needed. you can tell that NS or sek out another that you are simply 'contemplating" possible surgical intervention at this point. it does NOT in any way shape or form actually lock you into ANY real type of surgery, but you are "just" 'thinking very hard about it depending upon the overall MRI results". and that should be enough to allow a full run down your spinal since your particular symptoms just are screaming for a good full 'look at me' of your spinal. and another solid reason for the new MRI is BECAUSE of what actually DID show upon that four year old one back then at all? that 'type' of damage in anyones spinal just usually DOES require a good level of MRI to fully monitor for ANY possible changes in that overall landscape that just 'could' also be or have been slowly moving towards your spinal cord area too. if this NS or GP will not actually just do this for you, i would find another NS to work with here. like i mentioned before, a 'new' set of eyes WOULD and could make a big difference than sticking with who you have been who by what you have stated has allowed this crap to contunue(including what sounds like a totally clueless GP you need to also replace here) without trying to get you to fully even understand how critical and potentially damaging your overall situation can just 'be' when you have what you have going on in anyones spinal. the very LAST thing you want to end up with here is ANY level of can turn into with time in some cases, a much more permanent type(s) of damage in there,esp when ANY real nerve roots are being possibly impinged or anything is pushing into your cord area with too much force TO actually impress it and damage it too. this type of possible stuff IS the main reason for the absolutely NEEDED new full spinal MRI to be done.

and i would defintiely find out who in gods name a person has to go thru over there just to obtain their very OWN basic medical testing reports/results. that IS soo not right marie, seriously. there really HAS to be some way a patient can get at LEAST test results. but you should be able to switch to a much better, more caring and really much more knowledgabele GP here too since this idiot truely sounds like he will NOT be a huge help here considering his sloppy and rather 'lazy' additude he seems to already have towards your whole situation too? ANYONES actual primary/GP doc IS the one who is supposed to be in charge of coordinating your ongoing care(and staying on top of it),and also treating the "patients complaints appropriately" too. this guy just does not even begin to sound to me like what i just described here? and you just DO deserve sooo much better than you have been forced to simply suck up with this dude at all marie. a really good primary care doc just will deliver much better overall care. its that simple really. i do not know what in the hell i would be like right now if i had not had/have such a caring and amazing primary doc who has been there for me every step of my scarey ass life so far, and many times in many ways too hon. they DO matter ALOT as to how YOUR overall care just even 'is' for you too. you CAN obtain any actual test results too by simply asking your GP for copies. i do this, or go thru the actual facility where my tests were done. but he 'should' be giving any patient copies of all pertinent test results just to have for their own records or in case of emergency, you have all your own stuff to bring to any given ER for more immediate care since you already HAVE your very own 'baseline" of testing to even compare new stuff to? there are just many many real solid reasons that i totally believe that every single patient just 'should' seriously, always obtain their very own testing results, of every type too.

i just realistically cannot imagine where you live has some type of real solid hard rule that NO patient can obtain this very crucial to their own healthcare types of medical records? i would seriously check this out with whatever governing body just is in charge of patient advocacy or your dept of health and human services there, or whatever is similar there? we simply DO very much have rights as patients that our docs HAVE to follow FOR us. this info is what YOU need to find out, just what those patient rights are? here in the US, they finally put into place what is called 'HIPPA" and this strictly deals with more having to do with assuring that all patient rights and confidentiality is being upheld, in an across the board(whole USA) way? but we were already allowed to ALWAYS obtain medical records and defintiely ongoing test results for OUR own safety/treatment assurance too.

just DO stick to yopur guns here marie and DO NOT allow ANY doc to intimidate you out of something that you already just KNOW is so badly needed right now. this should be a fully contrasted type of MRI done on ALL levels of your spinal column down to the lil tiny tailbone too,lol. top to bottom for the best possible look at what IS in there now and going on and or has actually changed or progressed, usually more towards our actual spinal cords and not away from them..

just hang in there and get this done. and DO please, for your own sake here try and seek out a much better GP. i DO feel this would also help you TONS right now too. andjust so you know, most surgeons are kind of the other way around in what you stated about them not wanting to ahve anything to do with you only BECAUSE you chose,at that time not to have any surgical intervention?? trust me, given MY levels of damage i have and from other people i either know personally or who have also posted here? once you actually HAVE any, esp spinal surgery. any other surgeons of the same "type, like NSs in my case, only THEN are more likely to not want you as a patient, mostly becasue if you have damage, they will not want to take on YOUR liability.

unfortuently the amazing NS who just did my spinal cord surgery retired a few years after, and it has been HE** for me to EVEN find any good NS to touch me even to just simply eval me with new crappy stuff that is currently showing on my MRIs up as structual crap in my c spine now. now THAT IS sick. so i really would tend to doubt what you stated about that NS as realistically being any reason he may not be as much 'there" for you as he was in the beginning? these guys just ARE always very very busy doing surgerys and doing follow ups on patients who had surgery, and also new and ongoing consults FOR surgerys. so if he figures you are not going to even GO that route, his time is probably more shifted over to actual surgical patients? since this just IS what an actual neuro"surgeon" 'does", surgerys after evals and consults. while a good neurologist or physiatrist would have been more in tuned to what YOUR actual needs were/are kinda thing? just guessing there at the reason about the NS and your 'feeling" about him.

hopefully you can get this referral for the full spinal soon. and once THAT just gets done, it will kind of better dictate any real next steps for you too. please DO keep me posted marie. i really DO think its way past time here for you to at the very LEAST start considering possible surgical options. this stuff has already gotten way worse for you hon, and things will not get better til certain areas get fixed or interveined upon either. sometimes we simply HAVE to be willing to take the leaps of faith that just DO have that real possibility of making our lives and our bodies much better. and yes, it IS a risk, but nothing truely meaningful is ever just 'granted' to us unless we just ARE willing to try, and take some level of risk there too. just even going out our doors(which you do NOT do anymore, and THAT really makes me sad for you hon, but i DO know how you feel there) or even being in our own homes where more accidents just 'happen" becasue of inattention or the stupid things we just can sometimes do are also risks in certain ways too, ya know what i mean? we just learn to 'live with" those inherent risks, but they ARE there anyways. and yet we DO manage to get thru our days anyways 'despite' the risks. just something to think about hon. good luck marie, marcia
Re: Spinal stenosis
Feb 20, 2011
Hi, Marcia thanks so much for your concern,i;m taking on board everything you say and i;m grateful for your advice.I;m going to make another appointment with the GP tomorrow but don;t know how long i;ll wait for an appointment it isn;t usually too long if i;m still not satisfied after seeing him when i go to the heart clinic i;ve an appointment in April i;m going to ask the doc there if he can sort something out, he;s really nice and i think he;ll help.This will make you laugh last time i saw the gp i asked him why i had to keep going back to the hospital for bp tests [ i have high cholestorel aswell] he said i don;t know ask when you go back i said that they;d mentioned something about narrowing of the arteries but he didn;t know anything lol. I;ve been told you can get to see your medical records but they don;t like it and its a hassle but i;ll find out also if i ask at the hospital i can have copies of letters between them and the GP sent to me so thats something else i;ll do.The migraines are worrying me now and i;m leaning towards the idea of surgery if the heart doc agrees,but one way or the other i;m determined to find out exactly whats wrong with me its my life and there not God after all.I really do want a better qaulity of life not being stuck like this often bored to tears or just plain jealous seeing other people enjoying themselves,but i won;t let it get me down too much either.I remeberd i did have an xray on my back once years ago and they said i had wedging i can;t remember what it was for and as i wasn;t in pain at the time i wasn;t that bothered.[now i am]Anyway Marcia thankyou again i will keep in touch if you don;t mind as i feel as though i;ve got someone behind me and i;ll let you know how i go on...take care...Marie
Re: Spinal stenosis
Feb 21, 2011
i do NOT mind marie, that IS what the majority of us even post here for. to help guide others tru the crappy stuff that we already went thru, and of course, people like you too who are simply looking for some answers, direction and guidance as to what to actually just 'do' with a body that definitely has something 'wrong" going on.

and what you very simply stated towards the end of this last post hon? DO keep THAT very additude thru all this hon, and if you should EVER doubt yourself as to what you are simply 'doing FOR yourself, just think about all you have currently lost and how blown off your docs have made you feel? then get dam angry. trust me, after seeing some particular NSs among other specialists, and not being told really important to me things and finding out later from the NS i FINALLY ended up with(he WAS my 3rd opinion believe it or not) i got angry, really angry at the way i HAD been treated by what i call the 'clueless wonders" of medicine(and you do NOT deserve this crappy treatment either marie). i DID deserve to simply know more about what I had lurking inside my cord, and that it actually even had bled wayy before that initial MRI even found it, and two other NSs NEVER actually told me THAT? god i was sooo pissed you have NO idea. i used my anger to make darn certain that NO ONE was going to screw around with my life/body again. anger, in some cases CAN/DOES also give you some feeling of power too, and that was used to 'my' advantage. this may be what YOU also have to do here, get angry at the idiots who have simply NOT DONE their 'job FOR you as part of your own healthcare team too, and the stupid pain care among other things ya know what i mean? and you most certainly DO also deserve to just 'know' what ij the heck is going on inside your own body with getting every single possible test result too. i just do not get that part at all. these ARE YOUR own body system function test results or scans of your own body test results and you just DO need them esp when you have ongoing monitoring like your BPs, tho i really do not understand the 'whys' in why you are being sent to any type of actual hosp for a BP? is that what you ment there? how high on average does your BP usually run, with or without any types of high BP meds? and just how truely stupid IS your GP here anyways? god marie, lose this putz asap.

as far as getting those records, find out what the actual LAW states about that. and then go accordingly. honestly, i routinely have gotten ALL and every single document contained in like ten different docs records over the many years i have been stuck in MY nightmare with no real problems, and most esp including ANY test results, which i just usually will obtain as soon as they are done. and also ALLLL the many surgical records from all my six surgeries and my aneurysm coiling done at the hospitals too. down to what are the actual "transcripts of the actual surgeries" that get written by the surgeon himself known as 'op notes" too? i just cannot even imagine any doc witholding MY OWN records from me. i still obtain the most seen docs notes on like at least a yearly basis too. these are ALL for MY own personal records i do keep at home just so I can better stay on top of my own healthcare situations too since i have many different medical problems that are not related to my sp cord injury crap as well? so it really just kills me in what you state is NOT allowed to even 'have". and who gives a rats butt who "feels this is just a hassle" or upset becasue you simply want to or need to see your own medical records for gods sake? this IS your stuff and they should be making time for this. and also allowing you any and all copies of esp the more pertinent info LIKE all test results. if they feel its a hassle, honestly marie, who CARES. it IS their 'job' afterall, ya know?

when you mentioned getting 'migranes" are these true and actual one sided types of headaches from he** or just what you are describing as really BAD headpain? i myself have been getting the migrane with the pre migrane "aura" sine i was only 13(inherited this nightmare from my dads side actually), and i am now almost 50? my eyes get all messed up, and very insane 'perceptions" can occur, then about fifteen min later, if i do not take my 'abortive' to rid/stop the whole syndrome, that headpain from he** simply will come in and pound away only always on one side, never both. that IS a classic migrane. but the common migrane has no"aura' and just will slam a person but still on only ONE side of their head too? is either of these lil scenerios what you get or are you simply suffering from some pretty severe headpain somewhere inside your head? there just IS a really big difference between a 'migrane syndrome/process and a really nasty headache that is not actually one sided, or might possibly be depending? i have a friend here on these HB boards named sammy01 who has suffered some really really ugly and nasty 'headpain' that believe it or not was stemming from her c spine mess she had in HER c spine. these were alot of pressure and plain old pain that have sent her to the ER for help. they were just THAT bad. depending upon what just IS being really "impacted' in ones c spine CAN also crerate some pretty ugly headpain too. have they EVER actually even scanned your brain as well? if not, i woukld also try and include THAT as well with your MRI? but just make certain, esp when looking into the brain that contrast IS most definitely used too, like i mentioned before? this stuff really does its best "highlighting within the blood vessels actually. your heart doc just MAY be a bit more easily swayed doing the brain MRI considering what he just does overall and knows how blood vessels CAN create alot of headpain or pain in general depending upon what that more underlying cause is, and just 'where' its stemming from too.

there just are marie, sooo many interconnected body systems within us that in some cases, a heart issue CAN very much create some form of pain in our heads, or within the chest or jaw(mostly in women) among other solid interconnections we just also 'have' running along in us every single second of every day too. and totally depending upon how high your BPs have simply been running too, that can also be a good solid reason for head pain as well. our vessels will constrict and dilate depending upon specific signals being sent(our sympathetic nervous systems actually govern constriction and dilation of our blood vesls overall, and THAT very "action", severe constriction followed by overdilation of vessels in the brain can and does cause headpain and part of that migrane syndrome that even sets it off in certain ways itself), so you really cannot say for certain without some testing just what may be behind anyones headpain til you just do that testing, and then start ruling things out along the way. this is also pretty much how ANY actual real dx gets made too, testing and ruling things in or out and narrowing down all the possibles/differentials for any potential condition.

what i am thinking as far as that x ray that showed some 'wedging" would be within your actual vertebres running thru where ever that x ray covered? that can occur for many different reasons, incliding the ongoing deterioration of the discs in between the verts themselves(the wedgeing will "usually' take place at the front of discs and way more rarely in the back)? when they start to 'dessicate/dry out" with mostly age or what is referred to as DDD(degenerative disc disease, which I too have in my c spine) because there just also is alot of very much constant 'pressure/forces placed upon that whole "stack' of what makes up our entire spinal column in us, if there just are ANY areas within any given disc that are somewhat 'dryed out" esp towards moreso the front, that area of the rest of that 'stack" will tend to still push downwards becasue of the way it is simply 'set up' and of course gravity and the overall wieght of our heads too enters the picture and adds even more of a commpressing forces downwards too? if this IS on the very outter edges moreso than the middle, our vertebrae WILL start to push down more where there is either no disc, or it has lost its "shock absorbing/cushion to even 'keep this solid and NOT wedgeing, ya know what i mean? it simply pushes MORESO downwards and impacts the more deteriorated 'paths of least resistance in the weaker disc areas(which is usually the front area where it tends to dry out first). so considering what you already know is some 'crushed" discs in there, the wedging would not be all that suprising to even see upon your x ray, which also DOES show bone much much more clearly than even an MRI can too. and some people are simply born with a more natural 'wedge look' to their discs than the norm too. and that would make them more at risk/susceptable to it continuing to get worse in those people, mostly becasue of what i mentioned above as constant pressure?

sooo, obtaining that full spinal and possibly adding the brain to this too(mostly because of your ongoing high BP history and the underlying possibles that just also can create headpain only becasue that entire CNS IS connected) would really get the very best overall 'look' at what is called the entire CNS(central nervous system which runs from within the brain on down to the very bottom of the spinal) since this IS like all one interconnected "unit/organ' one area easily CAN impact another too. but whatever you need to do to get that full contrasted MRI done, just DO IT marie. this just IS in YOUR very best interest right now. this will show what needs some attention and what are the smaller isues that may not(at least right now anyways), but at least you ARE aware they are there at all? four long years can just realitically change and rearrange sooo freakin much within our spinals, esp if there already was the level of real damage displayed like you had four years ago. if you did NOT actually show any signs of wedging in that MRI you had(it WOULD have been picked up on MRI then), but DID whenever you had that x ray later, THAT IS a very 'pronounced and progressive" type of change you had there.

this is just the type of stuff i have been referring to as the 'progressive changes" anyone can simply have within their spinal, and moreso when you already HAVE identified damage going on that is not intervened upon earlier. just see what you can find out and get done for yourself at this point marie. and if youy feel th3e GP uis pretty much useless, DO GO out and find another. you just DO also deserve to have your pain better managed and the key word here is simply 'appropriately" too. seeking out a good pain management type clinic or facility would also be a good step in the right direction as well if GP is not going to even really TRY in doing THAT much for you as his patient. just a good suggestion and someone i use for MY pain as well. they just can offer you sooo much more in the way of possible options to try and treat pain than almost any other type of clinic out there. just a thought. good luck marie and do continue to keep me posted,K? marcia
Re: Spinal stenosis
Mar 16, 2011
Hi, Marcia, good news, have been referred back to surgeon and i;m just waiting for appointments to come through for mri scan.Feeling better now somethings happening, but got a small hernia as well now. It never rains but it pours hope you are keeping well and thanx for your help cocern and support..........Marie
Re: Spinal stenosis
Mar 16, 2011
no problem marie. and believe me i totally understand the when it rains it pours too. kinda been my life for at least the past 11 years or so, and it DO suck. you DO really learn how to truely prioritize things there tho.

just how did they determine you had a hernia? did your GP actually finally touch you to find 'anything' out for once? is this possibly what may have been causing the muscle spasms on your stomach you mentioned way back too?

so is this an actual neurosurgeon you will be seeing i hope? simply finally getting the badly needed MRI(tell them you WANT contrast), which they will also hopefully just 'do' along that whole spinal considering sympyoms too will let everyone just 'know' what the main issues really are and how much HAS changed and what may be now more impacted from four years ago too. this MRI just truely IS critical in even knowing where the heck they stated that 'stenosis' is located too. if this IS within the canal itself along the spinal cord, it would explain alot. but if 'only' at one level and impinging "A" nerve root or something, it would not be giving you the very widespread symptoms esp to your legs that you have been experiencing. but figuring in what you already KNOW as having those crushed vertebrae could very well have started to more heavily impact outward towards your cord, and depending, from either front, back, or from the sides too? it really depends upon 'how' the crushed vert fragments just are 'lying' within the spinal, and what 'they' may be impacting that would relate to possible symptoms from that.

i DO hope that MRI can finally be done much sooner vs later for you marie, and all the way from C to S spine as well, just to get the 'whole bigger picture' in there as long as you are having this done anyways? thanks for the update and DO let me know what you find out hon. take care marie, marcia.
Re: Spinal stenosis
Mar 16, 2011
Hi, Marcia, thanks for your reply, well yes he did actually touch me this time, its only a small hernia but he said the smaller ones are usually more painful but its not bothering me too much yet. I;ll be going to the walton centre in aintree liverpool its just for spinal and neuro and people from all over England are sent there. I feel better now somethings happening but still not convinced its stenosis as i;ve not had the pain in buttock people talk about lately though the back of my legs aree locking when i;m in bed, and the muscle spasms in my belly are really painfull. If it was just one thing i wouldn;t mind but when its a few things put together the mind starts to boggle as because of my neck i have trouble putting my arms behind me and have pain in my ribs[enough moaning now] i;ll just have to make them listen when i go but its disheartening when i;ve had two appointments with the heart clinic postponed and now won;t be seen there till near end of april due to staff problems anyway i;m just hanging in there wating for appointments now but feeling scared and hoping like you said they look at the whole picture of what my probs are, thanks for being there Marcia speak soon .........Marie
Re: Spinal stenosis
Mar 17, 2011
the ONE really big thing,since this was what they "told you' the initial "problem just was, is finding out very much exactly WHERE that alleged stenosis was/is located. from what i recall, they never actually stated THAT location? and that REALLY could matter, like i mjentioned before, if this is ;'only' at a particular nerve root level OR esp if this is actually IN your spinal canal that IS what surrounds your spi9nal cord. BIG difference in location/impact and symptoms you would have there too.

the one reason i think you are NOT getting what the "others are" with radiating pain thru the buttock area is YOUR particular problems 'sound like' they are stemming MORE from way above THAT level, like more within your c spine, so YOU personally would NOT be getting THAT particular symptom from C spine, only lumbar to S nerves moreso than any other area? BUT it IS very very possible to have leg symptoms from c spine problems. i do, and in alot of ways,also ALOT of muscular/spasms.

the bigger thing when the c spine is involved is that it just really HAS the ability, depending upon the actual problems, to impact anything and everything simply below the level of THAT c spine level impact. with simply having ANY crushed verts, with i am assuming some sort of disc involvement too, you simply will NOT actually know anything about what IS being impacted up there and down to what real level(poss spinal cord distortion or other cord impact) til an MRI simply will hopefully show it. this IS a critical test and also does need the contrasting agent i mentioned too for the very best clearest pics.

i would suggest that you simply also keep kind of a running 'journal' od events/symptoms from day to day too just to show that NS when you see him. knowing EXACTLY what specific symptoms anyone with spinal impact is showing will help him to better figure out just what levels are being mopst impaced and in need of much deeper scan and hands on eval too.

right now, just what ARE your specific symptoms and where are you having them? just work on obtaining that full spinal MRI hon. honestly, to dsimply 'tell" someone that they DO have a certain level of actual stenosis but NOT tell them specifically where its located and what it can be affecting is stupid. and definitely not in YOUR best interest at all marie. it realistically just could be anywhere within your spinal wiothout any correlating MRI or something ELSE that was needed to be told to you directly. it IS your right as a patient to simply BE FULLY INFORMED by ANY type of doc you see who esp 'Dxes you" with ANYTHING. and this TOO is just where YOUR own medical records simply come in. that is where you WILL find the more in depth 'specifics" per what any given docs "impressions' of you and your 'conditions' also get written up adter every visit too. just remeber, it is NOT your problem if getting YOUR OWN medical testing results and all medical records just is any type of 'hassle or problem' for anyone else. there are people who are actually hired to simply copy needed medical records for patients and referrals to other docs that also need a patients records as well? that IS their problem, not yours. just get what you can using anything you have to, but KNOW YOUR RIGHTS as a patient first, then obtain what YOU simply ARE entitled to hon. hang in there marie, marcia
Re: Spinal stenosis
Mar 18, 2011
thats about all you CAN do right now hon, keep tryin and pushing those who wont budge too. you simply HAVE to and need to find out what the heck is going on in your whole spinal at this point. it IS crucial. i am sick of lazy docs who just should NOT even BE docs, let alone "specialists" blowin off very REAL signs/symptoms too, esp in women since of course 'everything is simply ALWAYS just in our heads", not our actual bodies, Grrrr. if they simply do NOT know anything, how in gods name are they supposed to 'appropriately' treat YOUR main issues.

but with regards to that journal? anything that you also just can recall too, write that down as well as in 'pre journal symptoms" i was having before i started this? and go back as far as you can also remember (describe too just what occured with the crushed verts) along with ANY testing you have been "lucky enough' to actually obtain,along with ANY other types of "events' that you have suffered during the really sick 'non treatment" of what needed to be? sometimes you can actually correlate very specific 'symptoms events' with certain days or holidays or around specific appts you have had too. in that case, the calender always helps too. since most of us DO just tend to write down all our appts on the calender(i personally would be soo flippin lost without mine, lol) its a good place to try and recall specific things if needed too.

i also keep all my 'old' calenders since they simply DO contain alot of 'doc info" and surgery dates and all testing crap among other things too. i HAVE had to go back to at least a couple over time to fully remember specific things, so thats the bigger reason i do not throw them away when the new year comes now too. but i used to before all the medical crap came along and never thought twice about it til oned day i just HAD to recall a date when i knew something happened and it WAS correlated with an appt i had? THEN we started saving them. keeping them for at least a few years is a good thing. but i DO have every one from when MY problems began in the same box as my ongoing medical records i usually will obtain on like at least yearly basis too(its just a big covered plastic type of strorage box?). so now i have ALL of my crap together. but any and all test results, esp like my MRIs and the more significant/newer stuff always goes into this black folder thaT HAS MANY PAGES AND POCKETS THAT SIMPLY ALSO GOES WITH ME TO EVERY TYPE OF MEDICAL APPT TOO. THIS REALLY CAN BE A CRUCIAL THING TO HAVE ALL YOUR RECORDS IN ESP IF YOU SHOULD ever SIMPLY HAVE TO GO TO ANY er FOR SOME TYPE OF SUDDEN PAIN OR SOMETHING JUST 'GOES' ON YOU TOO? I LOVE MY 'FOLDER MARIE. THIS IS THE BEST THING I EVER DID JUST TO EVEN begin TO TRY AND STAY ON TOP OF WHAT UNFORTUENTLY ARE, MANY DIFFERENT MEDICAL PROBLEMS. so sorry, i hit that %*&%^&** caps lock and did not realize it, crap. everytime i go to hit that "A" letter, i seem to have a big issue with my finger justa "slllidding" on over to the caps lock button, and the stupid little light that shows it is way out of my peripheral vision unless i happen to move my flipppin head too.. i was NOT yelling at you there, K?

i am wishing you all the luck in the world that you just FINALLY CAN obtain the needed MRI, esp that damaged c spine. its screaming for a good 'looksee' at this point. just do NOT give up and keep telling whoever, over and over just what YOUR real needs are til someone finally listens. i have learned over these past 11-12 years that sometimes you simply HAVE TO lose the 'nice' in us and get a wee bit demanding when you just KNOW that you DO have certain rights then push them as far as you can, or you will not be heard and fall between those lil cracks? so go for it marie and get needs met. and DO keep me posted hon. good luck, marcia
Re: Spinal stenosis
Mar 19, 2011
sorry you had to deal withthat hon. but you are doing the best possible thing here by simply even keeping that lil journal of 'events'. this allows the NS to reallyt be able to look at what HE does not see, "all" of your 'descriptions" of any changes, events(believe me, with cord injury, i have had TONS of those), that i personally think sound alot more like they could be related to the c spine damage than anything else. but hopefully that MRI will be able to decide/see what the major areas of impact are, ESP once he reads just a little bit from your journal, ya know what i mean?

certain 'types' of signs and symptoms, and the types of things you simply experienced last night ARE just soo needed for your NS to know(they can, in alot of cases just be kind of 'tracked back' to very specific types of generators), BUT can also easily be forgotten if we do not simply take a few minutes in the morning and/or during the day(if something or anything just 'changes, feels odd or really impacts you at all in ANY way)to just note them in some type of daily running journal.

for some really INSANE reason i have yet to understand here, alot of MY own really off the wall crap appears to have happened/happens during the night too while getting up to go to the bathroom as well, and i do NOT quite 'get that' either. some of MY bigger indicators of the more specific damage i suffered just appeared that way. esp during my first year following surgery. this could have something to do with just going from lying down to the more 'upright, then walking immediately' posistion too?

but just DO keep on doing what you are doing marie. trust me, it WILL help with really letting your NS know just what happens at home, or anyplace else that HE just is not there for to witness, or how certain things/changes simply 'presented" themselves too. the mere fact that youy DID have 'something odd' that was NOT YOUR normal also take place makes it even MORE crucial that it gets written down, esp the way it presented, including the actual posistion you were in when that new crap hit. and how or 'if' it actually also went away. and be as detailed in your descriptions as possible too(like how was your actual balance during this episode? or any other stuff that also 'feels affected too?). even tiny little subtle changes or events simply CAN mean much bigger things when spinal related and those smaller things just usually are the types of things we tend to forget when we actually even see our "specialists, sooo just keep on writing there marie. it WILL help.

it sounds like you may have some increase in your spastic tone in certain ways? just what you described sounds alot like what i have too FROM my spinal level impact. the leg and other muscles just 'feel" very overly tightened and also in my case have a highly 'reactive" component that is called hyperreflexia(read what hyperreflexia is and what creates it so you just 'know' what that is)? just DO keep me posted hon. take care, marcia
Re: Spinal stenosis
Mar 21, 2011
i am soo happy you may finally be getting somewhere marie. the unfortunate thing with many specialists IS the flippin WAIT just to even get IN to see them. just keep on journaling things tho since that really WILL show him or her the 'reality of you and your ongoing symptoms". every single system function and ways our bodies react comes from somewhere AND more importantly CAN be tracked back to where it generated from. so the more real "event" info(with any real important details too) you can simply provide by that time WILL help in telling this NS exactly where at least the best places to check more deeply into actually are. simply journaling things really DOES matter.

i am wondering if your primary doc can possibly order a full spinal/with contrast for you while you wait? the thing is, your NS WILL want this done at some point and it WILL also allow you to go into the very first appt WITH a good level of crucial info right in hand too. just having a full spinal MRI run CAN very easily be done/ordered by almost any doc. there is just such a huge wait time there ya know? so you might as well get SOMETHING done. all you can do is ask/try and see what happens. my own primary has ordered almost all my many MRIs just to see "if' there is a true need to see a different type of specialist or the one we were planning on? like a plain old neuologhist Vs the need for the higher level of expertise of an actual NS instead. and i DID really NEED that NS after the first initial MRI i ever had that revealed my vascular glob inside of my spinal cord, suprise. and "oh crap".

hopefully things will not get too out of hand there til you can see the NS. but if anything simply DOES get a bit too over the top as far as how you just start to actually 'feel' or anything really prominent changes or you have a sudden onset type of change, do NOT hesitate to go to your local ER where they may want to do some in depth testing on you despite you having that appt set up down the road? some specific types of symptoms just are much more indicative of more major involvement than others. so if things get worse, DO go to the ER for help hon.

hopefully the wait wont 'feel' as long if you just try and keep busy. waiting for any appt just sucks. been there done THAT one to death myself. but DO keep me posted as to how you are doing marie, K? take care hon, marcia
Re: Spinal stenosis
Mar 21, 2011
Thanks for your reply Marcia, actually its quite a short time to wait for an appointment considering the cutbacks in England at the moment so i;m pretty happy although things for me are worsening slightly and i;m wondering if i;ll end up in a and e before that. If not the time should pass quickly as i;ve an appointment with the heart clinc in between times. I don;t think i;ll get an mri through my gp as when i went to him he said he wasn;t sure wether i;d be called to see the ns or for a scan first,but i don;t mind too much now as i know things are moving forward. I can;t stess enough what a great help you;ve been Marcia and i will keep in touch, i am keeping up with my journal and keep it nearby all the time to jot anything down, I;m a bit worried for the outcome but always better to know whats going on. Your a good friend Marcia and i;ll keep in touch........Marie
Re: Spinal stenosis
May 18, 2011
Hi, Marcia, went to my appt yesterday,took everything with me all i had written down etc. but i didn;t get to see the consultant it was one of his minions who gave me hardly any chance to speak, dismissed all i had written down, and as soon as i said i smoked he didn;t want to know. He talked down to me said smoking causes pain. I;m to have an MRI within the next six to eight weeks and i was given a prescription for gabapentin, the scan will not take in my neck just the lower back. I got home and cried i felt humiliated and dis believed and felt like just giving up and getting on with it, but i can;t.I;ll have the scan even if only to prove them wrong i;m still upset today but feeling a bit better sorry for crying on your shoulder all the time........Marie
Re: Spinal stenosis
Jun 17, 2011
honestly marie, i am sooo sorry that i have not responded to the other posts. but i am supposed to be getting mails from this thread everytime you or anyone else posts here and none have come til this last one, and i do NOT know why or i most certainly would have responded back asap(mostly since what this idiot is planning considering everything IS soo plain stupid). i just do not understand why i was not actually notified then as i was with THIS last post hon.? but yestedrday, i must have spent like an hour on another post to you and when my sons lab results came in, i immediately clicked on the notification we get, and when i read them(these were his post tx labs we are now getting every two weeks instead of every two months since some labs were just insane about a month and a half ago?), and simply wanted to close THAT out and get back to finishing THIS top you, BUT becasue i had this only in the 'window mode' and not the fulll page, THAT post too got deleted. i could have kicked in the stupid screen i was soo pissed, esp since i was almost done. so PLEASE do not take my non response personally hon, i just honestly did not know you responded here with updates and then i just did something really incredibly stupid on MY end as well, geeez. again, so sorry.

esp since you DO need some support and most definitely some guidance here with this place and your GP as well after THAT stpid visit and no MRI ordered in an area with CONFIRMED damage per a previous MRI too?? yikes, what IS that idiot thinking here? common sense ya know? marie, remember that post when i told you that sometimes you just NEED to get angry at these people who are NOT meeting YOUR real true needs on 2/21? reread THAT post hon, cuz NOW IS that time to simply NOT internalize this crap and feel badly about this idiot who did your consult(tho after a good cry, a little pity party, you DO feel better and get some of that crap out. so THAT is okay) but right now, i am soo angry FOR you at the ONGOING way you have been simply treated(or not treated) i could just spti!. you simply DO NEED to have that c spine re evaled and asap too, not ONLY just a simple low back MRI??? what IS this guy thinking here anyway? did you TELL him just how badly damaged your c spine was per that other MRI and he STILL decided for some sick reason that you did NOT actually even NEED to eval that, esp after four years of god only knows what levels of real progression may have taken place in THERE that just also 'could' truely explain what is going on now with your ongoing AND very progressive types of symptoms?

the FIRST thing that i do NOT understand here is the man who is supposed to be advocating FOR YOU as your GP, has soo dropped that ball on you by not even bothering to do a basic follow up on that four year old c spine MRI, and is NOT at all been really meeting "your" full level of needs either when advocating FOR their patients and helping you to simply obtain the best care, including pushing the specialists in making certain that THEY too meet you real needs has also not been done. i really do think if you cannot get your GP to simply back you/help you up here or use basic common sense as well as that idiot you saw who IS supposed to have a higher level of expertise here too, at the very LEAST, you DO need a new GP marie,seriously.

when any given patient is suffering at ANY true level, they are 'supposed to' try and figure out why by doing basic testing LIKE re assessing the most 'likely' generators(rule in or rule out) of YOUR overall body wide symptoms from the most 'likely' place in YOUR particular case. your c spine injuries that just DO tend to progress over time, esp four flippin years? anything that simply IS above in any way shape or form within that c spine that becomes damaged CAN very easily, if that damage is just there and impacting cwertain areas, CAN DO what it is your feeling hon,and FROM your head pain on down theru your legs. cervicogenic headpain can get pretty dang ugly in some people depending upon exactly what just IS impacting that area. its that basic and common sense and what i DO NOT understand has not been pulled into/fully looked into WITH at least a freakin MRI again into whole equation here either, like duh?? its THAT basic marie, seriously.

i do have some suggestions here tho. number one, i would try and bring another person who simply KNOWS the level of suffering you have been in and IN right now, who has seen the overall decline of 'you' and your mobility too over time with you to any and all appts. it really truely DOES help in backing up what you have been saying and they can also help advocate FOR you as well. we do not usually feel AS intimidated when we simply also have that 'someone' with us either. been there done THAT one to freaking death too in all my consults with mostly surgeons for my six surgeries(i drag hubby AND my mom). they too can ask questions as to why no one is bothering to look back into an area of what has been CONFIRMED damage in you with 'crushed discs and real nerve damage?? i mean come on, what IS your GP thinking, and now this new idiot who cannot seem to even connect the overall 'spinal connection dots" here either??

honestly marie, my legs are in pain, highly spastic(that IS a key to cord involvement right there if they are, you would simply show higher tone and a level of spasticity or hyper reflexia when your reflexes are evoked, tapped?) and suffering real ongoing damage strictly FROM MY C SPINE damage alone, not 'lumbar yet(tho i do have L 4-5 issues, i know this IS spinal and c spine UP from the legs) just based on how the L spine nerves run and what i had post op with that sp cord suregy too? it is all in what shows up on that hands on eval that this consultant(or whoever DID your eval) just simply should have done on you upon all extremities to simply feel and see YOUR overall responses to alot of what is checking ROMS, strength in them and a very much more in depth eval on your 'evoked responses' to certain stimuli to even know or tell if this could be spinal related as in spinal cord up in that c spine or something lower at all?

you NEED to get angry at the people who have continually let you down the most right now and that just IS your primary/gp at this point. at ANY time he could have simply ordered another look into that c spine even before sending you off to the other people who do not seem to understand how critical it just has been to re eval that c spine WITH 'known' damage already there BEFORE anything else here. just the high BPs you have combined with ongoing headpain should have prompted not 'only' the c spine re eval, but also an MRI done on BOTH areas at this point looking into that c spine to see impacted areas, or if ANY levels of 'fragmenting" have started/been there which IS highly common in crush injuries. 'any framented" type of spinal injuries just very much CAN also allow tiny fragmented pieces to lodge themselves just about anywhere inside there including causing pieces to migrate UNDER that whats called ligmentum flavum that is the ligament that covers your spinal cord too, before the 'cord layers" start after the dura and even possibly lodge into the cord itself. and if you could also have formed anything within your brain after these many years too FROM both your high BPs combined with pain spikes that just DO also impact how that blood flows within our brains. my aneurysm was more than likely generated mostly BY my pain spikes since despite the fact that i DO ahve a kidney disease, my particular BPs have still and pretty much alwas been 'hypo tensive" and not up at all except when my pain gets insane, then it will temporarily go up and once my body accomodates the pain attack, it goes back down. bit it IS that 'sudden' increase in bloodflow to the brain at all and the slamming of the higher velocity against those arterial walls repeatedly that DOES tend to generate vascular malformations within our brains like aneurysm. i am not at all trying to freak you out here marie, just telling you what IS possible that ups that absolute NEED to simply obtain a very badly and critical need for the c spine(to see if these could be cervicogeneic headaches) and a brain MRI both using contrast just see things more clearly,esp the critical vascular structures. there just has to be a real reason for your headpain that ALSO needs ruling something in or out as well. i personally had no head pain at all when my annie was Dxed in 05(no two peoples 'presentations' of just about anything will 'always' present the very same way, too many factors involved). i just had heat flushes down from the top of my head that dissipated into my c spine like very regularly. i simply(back then, and thank god) had a really highly experienced head of NS at the U of MN here as my NS who had a 'hunch' about the off and on again spaced out feeling i was getting inside my head along with those insane heat flushes who sent me for my MRA that did find my annie when it was still on the smaller side.

this 'new' facility and consultant you have been sent to simply HAS TO evaluate ALL of your symptoms, look at what has ALREADY been confirmed as real impacted damage in your c spine, and also rule out anything and everything that just could be a headpain generator too. they need to look AT your body as a whole and check into 'problem areas' 'just" to EVEN try and fully explain allll of your ongoing symptoms. and it does NOT sound at all like they are even doing this one thing for their 'brand new patient' who they do NOT yet even know at all from the inside.

if this were me marie, and i HAVE soo many times been forced into this very same type of situation and AM kinda in it agin her with my latest found spinal structural crap, i would bring that 'person" with me,and make an appt with your so called gp here just to 'discuss' your overall situation and see if he cannot actually 'do' his real job fopr you. you DO NEED that c spine re evaluated and considering symptoms and high BP history too, he can very easily order the brain to be looked at too with one single contrasted MRI. no problem(they simply scan both areas while you are in that tube). all he has to to is order the freaking tests. and if he will not accomodate you, i seriously feel you HAVE TO for your own life/heatlh sake, move onto another GP who simply cares enough to actually 'do' what IS actually 'indicated' for your level of symptoms, which IS actually what they are supposed to do for us as ptients anyways.

somehow some way marie, these people have to listen to you. and the very BEST way to even not be intimidated by either your GP or these new folks here is TO simply get mad/really frustrated while there so they CAN SEE IT, that no one is taking you seriously in ALL of your symptomology, and also to bring that 'back up person' with you as well. most docs really do NOT like to say crappy things to ANY patient and are more likely to simply be much more accomodating to YOUR real needs when there just IS another person in that room with you too. trust me, this does help TONS in giving you the ability to simply speak up and tell them how totally and completely frustated beyond belief you are right now that no one is bothering to check an area of previous damage and blowing off your symptoms here too. symptoms that our bodies show simply ARE in almost every case, our bodies way of telling us and our DOCS that something simply is very wrong inside our bodies. to ,esp your sick primary, to keep blowing this stuff off, and not EVEN done a follow up c spine MRI on that c spine, esp four years out from injury, and check for 'real reasons' for anyones ongoing headpain(there just ARE standard protocals for people who present with either sudden severe headpain and ongoing headpain that need to be followed so the really life threatening things simply DO get ruled out BEFORE something occurs that would be 'their' responsibily and liability too) that he HAS NOT followed or done on you. and that seriously is sick and neglectful when he KNOWS your history AND ongoing symptoms too.

i really wish i could be there to help advocate for you marie, but unfortuently you are going to HAVE TO advocate for YOU, and like i mentioned already, the very best way to do that is to get angry that no one is even listening to YOU or what your symptoms are simply also indicating. and it does not hurt to 'show' them how insanely frustrated you just are here either and tell them EXACTLY how you feel about everyone seming to not even be listening or caring about everything you have had occur in that c spine, and what IS simply showing itself now. and telling them exactly what you cannot even 'do' anymore, as in what this whole bunch of crap has done to YOU and your family and what its taken from you just cannot hurt either right now. when you simply do 'humanize' yourself to certain docs, THEN and only then do they see you as a real suffering human being and not 'just' another patient to have to deal with. tell them i soo NEED you to listen to me and help me try and get my life back. i have been there done that one to death before marie and will again if need be.

i DO hope you can make SOME better progress here hon. you just soo DO deserve so much better than you ahve been getting here so far.

and also simply DO whatever it takes to get a hold of your test results AND the hard copies of the films which now usually come in a CD format to actually just SHOW these new docs what was found four years ago(just go to that facility that did your MRI and see about getting a copy of that MRI CD and also the full report too). 'telling someone' about things vs them seeing things either on paper or right in front of their face in films seriously can make a huge huge difference. it makes a much bigger impact,trust me.

you just DO very much have a right to YOUR own medical info, it does not matter where you live marie, you just need to find out from the governing body(like your local health dept, or any governing entity of docs? like here in the USA its the AMA) what you need to do to go that route. and do not worry about the hassle hon, this just IS very much NEEDED info you have to have to 'prove' to idiots what you are saying, just looking at this sick situation you are in. it just should NOT be this insae to get "appropriate' testing done per your known damage and ongoing symptoms. seriously hon.

i hope at lease some of this has helped you marie. and again, i really am sosorry i just did not realize you even HAD responded or i certainly would have been here by now for you. i hope i did not make you feel like i had abandond you when you really needed someone to help and vent to. take care marie and do whatever the heck you just have to right now to get people to listen and just do what HAS BEEN an absolute NEED for you too. and DO consider changing your gp if this idiot will not help you out as he IS supposed to do for any given patient. its just soo not right. but see him first WITH someone there for you too and see if he behaves any differently. good luck hon andplease DO keep me posted, and i WILL respond back as soon as i see any mails or double check back here to see too. i just do not know if the mails did not come, or somehow i missed them. but sorry either way. marcia
Re: Spinal stenosis
Jun 18, 2011
Oh, Hi, Marcia, I;m sooooooo relieved your ok i thought you were maybe taken badly and i was really worried,this won;t be much of a reply as its late and i;m off to bed in a min, but i;ll write properly tomorrow i;ve had the scan but i;ll tell all tomorrow I;m just so happy your ok i;ll sleep easier....Till tomorrow Marcia.......hugs xxx :)
Re: Spinal stenosis
Jun 20, 2011
Hi, Marcia I;m sorry i couldn;t reply yesterday as all the kids turned up for Fathers day so it was busy lol.Well things are looking a bit better, my gp was really annoyed that the scan didn;t take in my neck he was also angry that the consultant hadn;t looked at what i;d written down. When i went to see him i explained what had happened and he;s taken my writings and is writing again to the consultant asking why the man i seen had ignored things and asking that theyre-assess the neck so i;m waiting again now but i do have a definite appt in August and hope i see the top man then. I;m sorry Marcia i can;t type for long as the arthritis in my hands is bad. i;m also in more pain with my legs neck and back and maybe i;ll end up in a and e soon anyway....thanks Marcia......Marie....:)
Re: Spinal stenosis
Jun 20, 2011
don't worry about the typing thing, believe me, so CAN relate. well at least yopu have a good fire lit under your primary which is SOOO needed right now in order you to simply get those very 'critical;' needs met with that neck/c spine level. what an ass of a 'specialist" to NOT even take that type of what IS a pretty impactful injury into acct and need to scan to tule your symptoms in or out, period. i am so hoping that this can be done ASAP and also help explain a few different things as well. wecan only hope, huh? just even getting HIM somewhat angery is always going to work so much better in the long run for his patients. i HAVE seen my own primary get soo angray at what was a huge lack of my NS even recognizing what he(primary) and i already knew after my c spine fusion was done. we BOTH knew and could very plainly and loudly even hear how much bone grinding/movement was going on inside my c spine after 7 months(alot of pretty loud movement/grinding of bone against bone inside my neck and then numbness set into my fingers, intermittantly vs a constant). it was very clear based upon my neck then down my arm to hand symptoms that were ten times worse than what i had originally stepped thru my NSs door for a fusion, that at least 'part' of it had not yet fused? and we were right in the end after 'just only lil me' calling and calling my NSs stupid nurse who honest to god, kept refusing to even allow me to actually even SEE my own NS who DID that surgery, telling me that it was a 'waste of HIS time"(i had had an 'inconclusive for fusion MRI done, then a stupid CT that actually stated i WAS, and at BOTH endplates despite my telling him alll my many non fusion symptoms too)?? THAT is when my own primary got HER on the phone and demanded i be re evaled by my NS. after just a simple(and soo way cheaper than the other two scans) flexion and extension type of x ray was finally done, it showed sooo flippin clearly that i had only fused one endplate and not both it was just too insane. it all comes down to just how those boney prominences simply 'fan out' at the very back of the c spine that shows it very clearly by 'how' they look mostly when your neck is bent forward? fused will stick together, non fused will continue to fan apart. pretty simple, huh? this IS by the way, the very best and cheapest way of telling if fusion took place with the standard ACDF(fusion) done? that flex and ext x ray.

and THAT is when i went in for the hardware placement(at 9 months post op). but my primary stood by ME and advocated for me when he simply KNEW i was right, but more importantly, he believed me despite what a CT stated as being actually fused at BOTH endplates. and that IS a wonderful primary to have. and also part of what IS their job we hire them for as well, to BE our advocates as well as the other obligations?

that whole visit you had with the other doc in my eyes was kind of a real waste of your time as far as really 'getting ANYWHERE"???(have you gotten the low back results back yet?) its just the very basic fact that everything and anything below that c spine levels of injury/impact could very easily be rsponsible for what you have been dealing with as symptoms and reduced to having to even BE in a flippin wheelchair. not to even mention your ongoing level of suffering. i am hoping they can and do find that underlying cause with a good contrasted MRI done where it 'should be'. just keep on pushin your GP to do this ONE needed scan for you. he knows, if he is actually angry, he knows how crucial and stupid it was for them to NOT bother to do it OR look at your lil 'journal of ongoing events' as well? MOST NSs LOVE this type of info and WANT it since it does help to try and track back symptoms to more specific areas at all. like duh?

hopefully the actual 'consultant' is way much better and aware of how critical even the more subtle type of neuro symptoms can be(and you CAN actually see him next time). try and hang in there marie, at least it sounds like your GP has and is finally doing what he should have been all along, just be your advocate in getting your real needs met. that IS something anyways. and i am very happy to hear that, and i am sure you were too huh, lol?

just try and obtain that c spine MRI and with contrast BEFORE you even see that facility again. your GP has the same authority to order that as any other doc too and can get it done MUCH much faster for you too(and more importantly HE KNOWS it is a needed thing considering). you simply DO deserve some answers here and it ain't gonna come from your low back with what your overall symptoms just are/have been along with what is simply already 'known' re that c spine damage too. good luck and DO keep me posted marie. i AM here hon, tho not always 'on the ball'? take care, marcia
Re: Spinal stenosis
Jun 20, 2011
Hi, Marcia, Thanks for reply,I;m really angry my neck wasn;t included in the scan i;m getting really bad pain there now and sometimes when i;m at my computer or reding i get a drilling sensation which is more irritating than painful but worrying. Yes at last my gp has begun to be there for me as he;s seen the deterioration in my condition.I won;t get the results of the scan until my appt in August (quite a wait ) and the results don;t go to my gp either which is stupid, but theres something going through government here now where hospitals and gp,s will share everything sooner the better.That doctor i saw was a little shit(pardon the french ) and i hope to see the man himself next time my condition has deteriorated now and i;m doing a lot less than i was and i;m in more pain, but the new painkillers are helping although i;m very tired all the time which means while i sleep so much i;m missing out on life even more.Anyway Marcia enough about me, how are you glad your computers sorted mine went off for a couple of days recently and i was tearing my hair out as its my life line haha.I;ll have to sign off here as hands are stiffening up hope to hear from you soon i;ll keep you informed....Marie>>>>>>>>>:)
Re: Spinal stenosis
Aug 20, 2011
well at least it appears you have one of the 'good' NSs anyway, aND THAT is HUGE FOR YOU IN ALOT OF DIFFERENT WAYS. (sorry hit the stupid caps lock again!!). soo exactly what type of 'heart issues' do you have that required a stay in an actual heart hosp?

when it comes to any swelling in our feet, the path of least resistance. gravity CAN at times kind of "pull down" any real fluid buildup from someplace else that just 'ends up there" kinda thing too? there just 'could be' many other different real reasons for that feet swelling than ONLY a heart realted issue too. even having this being a 'vascular problem' without any actual heart related involvement, but solely related to actual 'vessels" that can tend to kind of 'leach out' fluid from THEM too(usually from some form of compression within tissues) can be a reason just not an actual connection to the heart itself, ya know what i mean? so kind of try and keep your mind open to other possibles there too that are NOT related 'directly' to the heart too.

it really comes down to more of just exactly what IS truely 'wrong' or damaged within your spinal too, that could be dictating THAT particular symptom as well. at least THIS particular NS WANTS to know the underlying 'whys' in this just like you do, and that IS a huge thing in just having any doc actually want to find the source of any given insane symptoms we can just get once our inner cords suffer damage.

when you mentioned he is arranging to have a 'further scan on your neck?"? just exactly what is it he wants to do, another MRI, and hopefully ifso, along with a good contrasting agent? a contrasted MRI realistically IS the veruy BEST way to SEE possible cord compression, unless he wants to go even deeper using what is called a "3 T' or "3 tesla scan' which simply uses three times the overall magnetism of a standard MRI. it obtains much more in depth and clearer pics of the areas scanned. i have had one before but done on my brain to help define what they were perttey certain WAS an actual aneurysm, and it was of couse what it was. but that tesla seriously showed soo much more(including what the standard MRI did not as the actual annie in there). so DO ask your NS about trying that tesla scan on your spinal to see what IT could actually help bring to light. and as i said, with adding that contrasting agent with THIS type too just would help even more. just one other option that would show your cord much more clearly and deeply than mere 'standard MRI would or could.

the only other thing he really should be doing here is running some good labwork to simply see if there is another 'outside the cord damage or heart" reason for the feet swelling which could just have to do with certain organ functions or systemic ones too. getting your metabolics checked, along with(just so it can be ruled in or out) your overall kindey and liver functions done as well would really be the best and most well rounded way to fully eval that swelling in you right now. test and rule out everything just even possible that could generate any given 'presenting symptom" is pretty much how any doc arricves at ANY true dx in a patient. its just someting that given THIS particular symptom really needs to be done hon.

has this NS happened to mention ANY real possibles for that particular symptom to you yet? if not, he really needs to be telling you all the possibles that could simply even create THAT symptom. some i have just mentioned to you, but i would most definitely be asking HIM when you see him again. you just DO DESERVE some answers that i know he has all the 'possibles' in his head right now. let me know what type of actual scan he is planning(and when if you know) and DO definitely ask about the 3 tesla scan marie. it WILL show much more than any basic MRI possibly can. good luck hon,marcia
Re: Spinal stenosis
Aug 20, 2011
Hi marcia, thanks for your rreply i;m waiting on the appt for the mri, everything takes ages as the nhs is clunky at the moment. It;ll probably be just another normal closed mri same as last time, Yes this time I had a really good doc, but that doesn;t guarantee i;ll see him next time although i hope so. The reason i was in the heart ward was because i;d gone for a routine bp check with the gp and my bp was sky high he sent me straight to hospital and they kept me there so i take a high dose of meds for that and its been stable for months.The ns i saw said he;s doing this mri in case there;s compression on my spine from my neck. On the lower back mri he said theres layers round my spine (fat) i think, but i;m not grossly overwieght and havee only put wieght on since all the meds and immobility.He said if my neck isn;t worse than it was they;ll test for other things, but i;m worried i mightn;t see him next time, He mentioned polymyalgia or fybro my symptoms are a bit like fybro but not poly. I can;t wait for this scan now its all really getting me down. Sorry for being a moaner Marcia......i;ll let you know how i get on..........your friend...Marie..:)
Hi Marcia, hope i didn;t mislead you when i said a lots going on, i meant in day to day life at home,i just wanted to keep in touch. I;m still waiting for the mri on my neck, but have to wait till November as yet again there was a cock up with my appts, but i;m getting used to waiting around now. I think i told you in my last message that they think it might be fybromyalgia as there was no stenosis in my lower spine, but the pain when i;m mobile has definitely gotten worse. I;m suffering a hell of a lot with my feet and legs now as well there constantly sore and swollen and the skins very dry,the recent heatwave we just had hasn;t helped either. OMG i;m such a moaner, how are things with you, I hope your not suffering too much. Well i;ll let you get on now but i;ll keep in touch and let you know of any developements..........keep well and take care.......Marie.......:)

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