It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....

Spinal Cord Disorders Message Board

Spinal Cord Disorders Board Index

honest to GOD PB, i just typed out a rather in depth post to you aned it got lost when i inadvertnatly hit the wrong dam button. and i AM furious at myself. my fingers do NOT always hit the right keys here. sorry for that.

but the HUGE thing i need to know just considering that thru all of your 'facts' you have stated up there, there is NO mention of just exactly what level of your spinal cord that stim was at? was it even 'possibly" at your area where you now have the atrophy AND esp the myelomalacia? the one thing about myelo kicking in and i will explain the process when i simply have much more time here, it will only kick in when there has been very direct loss/damage to the spinal cord itself ususally by 'something' that has been pushed up against it for way too long? it litterally 'kills off' the spinal cord cells at that impacted level(the cell loss can also create certain levels of atrophy to occur too, but not the only casue). but myelo will ONLY usually show itself for a very short length of time AFTER the 'impact has been done or 'removed'. so knowing the area they even did that stim/trode removal is crucial before i can even try and give you much more solid info.

you just do NOT at all appear to have ANY real significant areas that are even 'close' to impacting that area to even 'cause real in depth damage like what it would NEED in almost any case before myelo usually gets 'prompted" to start its 'process of softening/granualizing then removal by macrophages, ya know what i mean? so 'something' from more 'outside' of your spinal cord area just would have to have somehow 'impacted" it in some way. OR, this could be a totally different "type' of neuro issue.

but i will get back to you allen. but DO let me know just the exact location of that stim hon. i DO know we HAVE unfortuently had to chat before re; i "think" i recall it was actually your bro in law and his coma/passing up in the brain boards?? again, so very sorry for your loss after everything you all went thru. i will be back as soon as i can tho allen, hopefully tomorrow morning? hang in there, marcia
okay, i have been doing alot searching here. in many various ways for the possible casues of the myelo and the atrophy? the one thing i DID find out that in most cases, when you jusyt even HAVE a good level of myelo going on, atrophy pretty much WILL also follow since there IS a 'breakdown/lessening of the actual cord itself(cells/upper motor neurons). so that would not be real unusual to simply see the one finding along WITH the other. but in like MY particular case with my myelo showing two months post op with NO real cord atrophy ever even eventually showing itself, is what would be more of a temporary/situational clearance and episode. while YOURS does appear to be stemming from 'something' that is causing like more ongoing contact of the more 'something within' that spinal impacting it over and over again to even GET to the atrophy stage? do you see the difference i am referring too here allen?

as far as real possible underlying casues go, the one thing i am wondering about considering there just IS NO real solid findings AT the level of impact there, is this 'may' be possibly attached to the hardware and/or positional movements in certain ways, that you just 'do' during any given day? like moving your neck into some specific posistions? does this EVER bring on ANY of your actual symptoms AT ALL? they call this a more 'indirect mechanical impact" to your sp cord. the indirect would ONLY present itself when something is simply 'there' too close to your actual cord that would also potentailly shift on into the spinal cord level(right side) when you just flex or extend or even move the neck laterally(to the sides) as well. just considering this is NOT the entire level being impacted but 'only' the right side in your spinal, this would 'seem' a more likely scenerio.

there ARE some better more specific types of testing you can have done even using contrast with having loss of kidney function too. all you do is use an amazingly wonderful med that encapsulates ALL of the contrast dye when its run thru your system so it will NOT at all actually begin to "filter thru the kidney" you have left. it simply passes thru unfiltered out the 'usual' means of output when you pee. i have had to use mucomyst MANY MANY times just having my kidney disease and also liver disease too when i developed an aneurysm that just HAD to require alot more heavier contrast than ANY real other radiologic test i have ever had. and this was five seperate times, with NO impact upon my kidneys at all. i did NOT EVEN have a clue about this drug til that absolute need was there and i was told by my interventional neuradiologist that i actually 'could' have contrast with no impact. go figure. but with the five seperate, heavily contrasted angios i have had, honestly allen, ABSOLUTELY nothing changed with my kindey functions or any labs either.

i am only mentioning this since from what i have been able to gather here, you simply NEED a much more clearly defined pic/deeper investigation of that very specific affected area possibly using whats called a contrasted CT myelography? this would simply take a really good look AT the area of the spinal cord with the problems, using a contrast agent which would soo better highlight potental problems at your cord level.

but the one other thing that i would really suggest very highly FIRST, just to see if your neck posistions, mostly upon flexion and extension actually ARE moving AT ALL more 'into' that cord space would be a very simple flex and extension type of x ray, which also could include lateral movements to both sides as well, just to see what 'may' actually shift, esp that hardware that could be rubbing into the outter part of your actual spinal cord.

i just simply cannt find any other possible explanations here unless, like i mentioned before, you just could aslo have some level of more indepth type of a neurological disease' condition that is kind of 'attacking' your spinal cord "componenets" too? the one other potenial much much deeper type of spinal cord scan you could also have done is called a '3 T' or "3 tesla" scan? this IS a much more magnified type of MRI that simply uses three times the actual magnetism of a plain old MRI, even with a contrast added. they also used this in determining my annie too since back then, before i was sent to my INR for my inital consult, i was STILL going by my nephs recommendations to ALWAYS decline any contrast offered. so they had to do that tesla scan along with a non contrasted MRA that even despite my annie being very small and much harder to detect becasue if it kind of being hidden more into the bend of an artery? that 3 T popped it right out there for them to see, and so did that plain old MRA too which only looks at areteries upon scan? but this would also be a much more definitive deeper look into that myelo/atrohy area as well. in fact, probably a much better idea actually. it just truely DOES get much deeper and also clearer spinal pics. both with or without contrast,but contrast IS usually just the better way to go in most situations except with kidney problems. but that mucomyst allen just really DOES take away any potential for MORE kidney impact mostly upon of course the GFR and creatinine. i am sooo thankful for the muco or my kidneys would have been trashed during my many angios and also with the annie coiling i also had to have.

unfortuently too, the one thing that simply DOES occur wayy too often is people who just DO seriously have even really significant findings going on inside the spinal, but they will just NOT always show themselves upon any MRI. its just the nature of any given 'scan" and what is NOT a real true honest actual 'picture' of an area? i cannot even BEGIN to count, just in this particular forum over many years i have been here, how may people whos MRI reports showed like a herniated disc "only" or other more 'minor issues, only to have the surgical done and find out ONLY when that surgeon actuall "visualized with his own eyes, certain and much more impactful findings, were they even discoved AT ALL. a scan IS ONLY that, a scan. but the deeper into the spinal with a scan like the 3 T you can go that much more just gets 'seen' down into the cord itself.

have you actually even consulted with a really good knowledgable neurosurgeon regarding the symptoms there? if so, what did he or she have to say about possible causes? i would really sit down with your NS and just ask about better defining that area of myelo for the real underlying casue. ESP if you also have what appears to be a perfectly norla looking level of ebb and flow of the CSF fluid that surrounds that cord too? if that CSF is not actually being impacted/congested in any way at all, the chances of what is occuring may be much higher for potentail neurological conditions. so everything needs MORE deeper testing to simply rule in or out some very specific indicators of what could just create what you actually even have there allen.

you simply DO deserve some good solid answers here allen as to what is going on and ONLY your NS can even realistically begin that process of deeper testing and ruling things in or out for you. i do hope this at least helped yopu some. good luck, and DO get the NSs butt moving here towards Dx of your symptoms. please do keep us posted, marcia
First of all before the MRI of the spine I went thru an MRI of abdomen/kidney since there was a cyst lesion on the kidney and since I have kidney issues they wanted to rule out renal cancer. The test came back normal. But I mentioned that i was scheduled for an MRI of the spine and with all the implants they referred me to one of their other offices which had a more powerful MRI machine and larger magnet to try to get everything. I think it was called an E[see machine [?}
Dont fprget wotj lodmeu issues I can NOT use contrast gadplinium ? and cant do a myelogram, due to the contrast. IT would kill the one kidney I do have.

But I looked back at copies of prior studies before the implant was done and myelogram was done.Here are the results:

REPORT OF 12/20002





hERE is the questiion even though these reports are several years old do you see any effect on the cervical spine. I tend to think that the findings in the thoracic or lumbar spine simply went away. I assume there probably is still problems from one degree to another. So appears there are issues at all levels of the spine.

Any additional comments on the new information supplied from the prior reports?
thanks for any input.

sooo sorry it has taken me like forever here to just get back to you hon. up til last week?, my own medical crap was/still is hitting the preverbial fan. and my best friend in the whole world was recently dxed with a very longtime there type of stomach cancer too that her so called primary 'should' have checked out well over a year ago. so i have been just a tryin to just get thru ya know? i finally got back here like last week, more to simply get my mind onto other things other than what i was and had been dealing with. but i DID let you down allen and in the middle of YOUR crap, and i am very sorry for that. i do not usually leave people looking for answers or help simply hangin like this.

ya know, for a couple weeks there i spent what had to be a ton of hours simply trying to find good and solid info on what could even create the atrophy part IN someones cord, but unfortuenly kept hitting every imaginable site for people suffering atrophy FROM a spinal cord injury that was showing like in extremities or other body systems instead. stupid and aggrevating to say the least. so i did the myelo with cord atrophy over and over and still could not obtain a clearer pic of the 'whys' in the atrophy part alone either. but it does appear to kind of go hand in hand only because myelo IS deadened neural tissue of the spinal cord and NO blood supply either, also it would kinda follow that atrophy may also just 'be' a part of this whole process as welll? except i KNOW without a freaking doubt that when my myelo showed ityself, i still had NO atrophy ever listed as being "IN" my actual cord where the myelo had been or anyplace else for that matter, despite having very impactful and deep damage to my spinal cord about one third of the way in?

sooo, this can be casued by two possible things allen,or what this would track back to eventually so to speak not matter HOW you looked at it. this has to be either a very "outside and indirect mechanical force" at work, like i mentioned above(hardware rubbing,disc, osteopjyte impact while indirect direct movemnt occurs)? OR this IS just something along the lines of a 'dystrophic condition" like in the many differnt 'types of dytrophy like muscular dystophy is in that same level of catagory. just simply looking at EVERYTHING that you have provided with absolutely NOTHING at all actually even impacting that specific area where this is going on, realistically just would make the most real sense.

lack of any really good bloodflow can also do som,ething like this as well. i am really seriously wondering here just EXVCATLYwhat all the different specialists who you have seen over many years, esp the doc who ordered this last MRI has had to tell about what his overall 'impressions' simply have been regarding what in gods name could even just DO this to a persons actual cord, without ANY real direct impact simply being there too???? just what DID he have to say re this recent MRI cuz i am curious as all get out.

i am also wonderting about that one surgery where they stated that they had to 'thrust that c spine forward"? to i believe place those rods? how much 'thrust' was there and how different did your next MRI just 'look' after THAT surgical follow up MRI? do you have the actual results from your own EMG/NCV that was done on you(youy mentioned there was some sort of actual damage done to you then or am i mistaken?)? while of course diabetic PN would show up initially in the extremities first, i am seriously wondering what was documanted in that EMG report as flow velocitys and also could have had alot more to really do with the spinal than diabetes just given the areas that those hands and feet track back to are the C spine where you did also have surgery and various 'adjustments before rod placement was also done". and of course the feet/legs would go up to that lumbar and actually to anything above them too if this just involved more of a cord issue than lumbar issue, ya know what i mean(a c-T spine level cord impact injury CAN very much show itself wayyy down to a persons feet. mine does)? just some other 'possibles that you DO NEED to discuss with your neurosurgeon soon.

it wouldn't hurt to also obtain ALL of every single surgeons clinic visit notes along with any and all surgical notes that would simply 'be contained in" what is your 'central medical file' at the hosps where you had these surgerys too(it helps tons if you also have the actual dates of the surgeries too). i get ALL my stuff from any doc or surgeon, ALL test results that were ordered and you can bet, every single document in my central files from any hospital in have been in. and down to what are referred to as the 'op notes' that every single surgeon, by law has to make following every single surgical procedure they simply 'do' on anyone too, no mattter how small that procedure just was as well. it HAS TO be well documented anbd for many different reasons. but it is basically the 'transcript of any given surgery. and everyone should just have this stuff in their possession along with all the other stuff i mentioned too. it is all a bigger part of anyones true medical history.

and just to mention this since you brought this up in your last post allen? anyone who is suffering from even a lower to higher level level of kidney disease process CAN very much safely protect their own kidneys by simply using what i mentioned before with protecting from ANY contrast as 'mucomyst'? allen, i had to undergo, just for my suprise aneurysm, four seperate angiograms(over a couple years) along with the actual annie coiling procedure that actually use wayyy more contrast than any IV type of MRI dye does. four times and a coiling. BUT, prior to the annie showing itself, my neph had told me, only becasue i have a very progressive damaging and incurable type of kidney and liver disease, that i should ALWAYS decline any contrast when offered, which up til then i HAD very much been doing. BUT when you actually have an anureysm, you simply HAVE to also use a contrasing agent to even begin to fully see it in its 3D form and most definitely to being able to coil it. but THAT is when i was finally told about this amazing med called mucomyst(N-acetylcystine). the antidote used to treat any patients that OD on ttylenol too?) this stuff simply DOES well encapsulate ALL of that contrast so it very very safely can pass thru the kidneys themselves without EVER actually being "filtered out' and that filtering process is what does DO the damage to our kidneys and send functions as the GFR way down, and the creatinine way up. after having the four times around angios, then coiling, i swear to god allen, not even ONE sinlge point actually changed in what were my 'normal' labs, despite my severely damaged and destroyed LOOKING kidneys upon US i see every year.

this just IS a possible option should you ever have an absolute NEED for some type of clarity in any scan that needs contrast(and never forget that ANY scan you may have is ONLY JUST that, an actual 'scan' of an area and never an actual 'picture' of an area, so things CAN and do simply get missed on any even the best types of scans too like every day). just have a chat with your neph and see what he has to say about the mucomyst. do not simply take my word for it, talk to the doc who KNOWS you and your kidney best allen. but i AM truely amazed at how truely well this stuff really works and worked for me with that much heavy contrast needed over and over again,and with NO changes at all in my kidney labs.

my absolutet BEST advice that i can give you at this point, and something that is if were in your shoes would also do? is to try and find the best possible actual hosp/teaching facility in your area and go with them(head of either neurology or neurosurgery to start) to see what they can simply find out about possible conditions and or disease processes that could actually even 'do' to a persons spinal cord what is going on within yours right now(something is simply soo 'not right' in how that area just 'is' considering no direct impact, it has to be within). the BEST possible place for what i had inside my cord, and with my sons bizarre liver nightmare WAS, thankfully the U of MN here where we live. they are used to seeing the more rare or off the wall types of conditions at these types of teahing hospitals since these ARE the facilitys that most people will turn to when every other specialist they have seen says 'i don;t know' or i can't help you.

i just DO think you need someone with alot of advanced knowledge in neurology and possible dystrophic conditions. yopu simply will not find out anything going the rout you have been since personally, i DO feel this is just way over most specialists heads. but you DO deserve some answers allen. sorry i could not provide at least some of those for you. just see what you can get found out by going to the 'right' places for what YOUR true needs are. i do wish you soo much luck in finding out what is giving you so much pain and also disability allen. please DO keep us posted. and again, so sorry it took me sooo dang long to just get back here for you. i do have more info for you. marcia
It seems as if you have had quite an extensive surgical spine history. Do you have any plans to see any doctors in the future? What is your next step?

[QUOTE=Pebble Beach;4719148]Its been a while since ive posted. here is a summary of my past

- 1994 lumbar surgery herniated disc
- 1995 cervcica; sirgery for stenosis
- 1997 lumbar surgery for flatback syndrome/harrington rods L2 down to hip
- 2000 cervical surgery for cervical kyphosis/harrinton rods C3 to T3 about
- 2003 diagnosed with diabetes; blood clot left leg surgery and kidney dialysis; 1 kidney; born that way and my right kidney functioning at 30%
- 2005 Spinal cord stimulator implant
- 2007 Surgery for possible pancreatic surgery tail of pancrease removed and spleen
- 2011 spinal cord stimulator removed; not working and needed MRI so implant had to be removed

- severe neck pain; more radiatiating pain to both shoulders
- headaches once in a while
- low back complaints; numbness in left leg from knee down
- feeling of pebbles in the bottom of both feet
- loss of balance. havent fallen yet but unsteady on my feet

- EMG showed severe nerve damage in cervical and lumbar region]
- servere arthritiis in neck and low back
- neuropathy both legs from diabetes

MRI done this week of cervical and lumber area"
- Lumbar didn't show much due to all the hardware in my low back
- cervical:
Paragraph: Therre is focal T2 bright cord signal alteration seen within the right aspect of the cervical cord at the C4-C5 level. There is focal cord atrophy and subtle increased cord signal alteratiion at the C6-C7 level. Findig are likely relatedto cord myelomalacia. The crater cervical junction is normal.

Before i state imprression let me say my pain more on the left shoulder is high. On a scal of 1 to 10 there are days it feels like an 8

- C2/3 no corm impingment and no neural foraminal stenosis;
- C3/4 no cord impingement therere is mild bilateral neural foramina stenosis
- C4/5 mild endplat spurri ng thiere is no cord impingement no neural foraminal stenosis
- C6/7 Milf disc bulge and endplate spurring. no cord impingement no neural foraminal stenosis
- C7/T1 Mild disc bulge and endlplate cord impingementnt no neural stenosis

---- suspect cord myelmalacia at the C4-5 and C6-7 levles with focal cord atrophy C6-7

What bothers me?
- Myelomacia which i know means softening of the spina cord
- therer are sme mild disc bulges
- there is a mentioin of bone spurs
- the initial paragaph says altercation of the signal cord

What does all this mean? How serious is this? The spinal cord is weakening? that bother me. Threre are bulges
mild they be nd bone spurs.
And here I am in pain everyday, loss of balance is getting worse. There is severe nerve damage per EMG.
What do I do? What do I have. I cant think straight. Please help.

Here is what is going on lately. Sorry I havent posted lately. I saw the neurosurgeon in May. He did not like what he saw. But he did note on the film something not on the film. It showed narrowing on central cord at about C4/5 level or so. He was concerned about doing any surgery on me. Partially he didn't want to touch me because of other health risks like the diabetes and the kidney disease. But with all the surgeies ive been thru he said if surgery were done getting to the area would be a problem which may require going thru the sternum to evem decompress the area on the spinal cord. He did note decreased neuro in my arms etc from prior visits. So between the health risks and doing the surgery he felt it would be a surgeons nightmare to do anything on me.
He recommended core strengthening exercises and to continue with the pool exerciesed that I have been doing. Then redo the MRI in 1 year to see if any changes are noted for the better or the worse. This has me worried.

Also I've been on disability for the past 8 years and up for a review by social security. From what Ive read this is my first review that social security when approved me classified me as medical improvement not expected. Dont forget I have diabetes; one kidney and renal disease in the one I have. Functioning at 30% and elevated blood level. While the numbers have been holding steady in time I expect it to progress in further kidney issues. I spoke to several attys and they think I have a lot of issues and a good case for continued disability.

Any suggestions? Look for any feedback Thanks for listening.

Hi Allen...sorry you are doing so poorly but glad you got the stimulator out.

You might want to consider a couple of consults by mail. I know the Cleveland Clinic will look at all your records and tests and give you a second opinion and I know my doc in Boston always has tests and films and anything else sent to him and if he thinks he can help, then he'll contact you about what he thinks he can do. No one sees him without that first.

I wonder if the same surgery I had(laminoplasty) and some here have had recently, would be okay. It goes in from the back and removes the bone over the bad areas and then re-shapes it and puts it back in. No need to go in from the front. Doubles the amount of room in spinal canal. Would relieve the pressure on your cord. Very few docs do it and he's been doing this procedure for several years so he is very experienced. Even Hospital for Special Surgery told me to go to him as they didn't do this procedure(yet..this was 2006). I know you have rods from C3 to T3 but I believe he can still do it despite the rods.

If you are interested, let me know and I can give you his address. Cleveland is on-line.

Just a suggestion. I hate seeing you in so much misery.

gentle hugs..........Jenny(fused C3 to T1)

Couple of things: First my symptoms: I have had numbness in the left leg from the knee down for years. I get some numbness in the right foot in the toe area and at times feels like I am walking on pebbes; symptom of diabetic neuropathy.
I have bilateral shouder pain. the left shouder being the worst. i have weakness in my arms cant sit stand for long periods of time and can't walk long distances. If you look at me most people wont know that I have a problem. Also at times I know that my posture is not right. Sometimes I am standing straight other times I am somewhat stooped over and feel my neck is thrust somewaht forward. Other times I feel like my spine is being crushed

As to 2nd opinions if you can recommend somewhat at the Cleveland Clinkc let me know and I will see if the doctor is on my plan.

As to Hospital for special surgery I have been there years ago for surgery but they are not one of my particpating hospitas on m current plan.

I did try to get a 2nd opinion someone out of philadelphia. The doctor would not see me. The problem I had with this particular doctor is that he did not review the films which showed the cored compression and was not on the report. So for him to say no surgery and just look at the reports I felt he wasn't looking at the full picture.

let know about who at the ceveland cllinic and I will see about contact them.

thanks for the input.

honestly allen, i am in kind of the very same posistion as you are with real cord compression(but not YOUR level of myelo and cord involvement), but with insanely shifted screws from my past hardware placement going UP from horizontal to vertical and into the upper/next disc space(c 5 that also has a now horribly deteriorated disc as well, yippie). and my NS is EXTREMELY not wanting to even touch me to do anymore surgery either. and i am soo dam angry and soo depressed right now, among other things. i am also currently and have been since 04 also on disability and given the very same "outlook' as you. not going to get any better, just worse and i too have kidney and liver disease on top of alll my spinal crap too. ain't life grand. have not had ANY notices of reviews yet tho but keep expecting them to come at SOME point.

i was actually thinking the very same thing jenny was when your surgeon simply described what he would have to do by even going into your front? go to the back and open up the lamina in "some' possible way. the ONLY reason this very very large bulge and osteo complex i have sitting behind and kind of all around my c6 is not AS much of an issue as it would be for me under 'normal' circumstances IS ONLY becasue of when i had my spinal cord surgery done back in 2003, they had to remove the backs of three verts in order to even access my cord for surgery(a full tri level laminectomy). so that HAS made my actual canal space much larger(from c 6 to T 1) than it would have been otherwise. and also made these osteos and bulge that are currently only 'impacting my thecal sac' actually would be otherwise smack into the actual cord and WITH alot of compression IF i still had the backs on that esp c 6 level at all? this simply allows some level of more 'give' for my cord. not having my backs in so many ways has sucked and made my whole spinal much more unstable, but with certain findings that now showed ONLY upon my CT i have, it IS now a really good thing too.

it wouldn't hurt to obtain that second opinion and specifically ask about doing that posterior appraoch too and just see what a good knowledgable NS who does plastys has to say. right now you really have nothing to lose here by finding out all your options, ya know? i am having to do the very same thing right now too and it does SUCK to even think of another spinal surgery, but there just is NO real stability left anymore up there for me.

and trust me here, NO surgeon can even possibly make any really solid good decision about whether or not to actually do ANY real level of surgery on anyone withoput first SEEING the actual films, and not going by what a mere radiologist has to say as how 'they' interpret things based ONLY on a very limited amount of knowledge and NO neurosurgery experience?? for ANY real opinion, you absolutley HAVE TO have those films and 'maybe' that report. but 'seeing something' ON films IS crucial for opinions from surgeons.

while some things just truely are inoperable, or the potential surgical outcome would be much much worse than what any given patient is already dealing with and living with, along with some pretty insane possible surgicall risks as well. there ARE other ways when certain types of needed surgical procedures just even can be done in some cases that when needed, should be also fully explored. in some cases, when ya cannot hit something from the front, you CAN go thru the back. and since you do already have good stability present with the rods, even if they had to do a full ectomy like mine vs a plasty like jens, you personally would still retain THAT level of stability there. while the surgeon may not be able to actually 'do' that best possible thing that he wanted to do from the front, in other cases, a possible "plan B" can be done from the back that will at least 'help" the overall situation. just some thoughts. marcia

Yes the whole thing stinks to say the least. Even before I had the latest EMG and MRI results I was complaining and had seen my doctors about it and the general feeling was that they don't want to touch me because of the overall health risks and the fact that I had been thru so many surgeries already they werent sure what benefit I would get out of it.

With the cord compression in the nek I don't know how much narrowing there is but I saw it on the films and certainly is noticeable. What will life be like if the compression does get worse? What will the end result and quality of life be like.

My surgeon felt that if surgery were done the option may be going in thru the front which would require going in thru the sternum to get to the levels affected. Nothing about a posterior approach came up. Didn't discus a lamioplasty.

It was mentioned about going to the Cleveland clinic but not sure who to use.Do I go Ortho or Neruro. found several doctors from both fields on my health plan But I don't know any of them from Adam and the question is who is most qualified
Doint a paper and film review may give some answers but my feeling is the patient needs to be seen as well to determine what deficits are noted upon examination.
Seems lately a lot of doctors opt for paper review and to me that is not the best medical advise. You need to look at the entire picture to make a determination on treatment.
Not sure what else to say at this point. Can't give up hope yet. Still searching for answers.

One thing I just noted in the MRI report was "focal cord atrophy at C6/7. Doesn't indicate how narrow it is though as to measurements.

Sent a message to Cleveland Clinic to see about getting a 2nd opinion. Will see what they say.

I feel like I'm being pulled in a million directions as to what to do. I feel like I am missing something and need more input.
allen, when you sent info for that second opinion to the CC, did you also send what is just NEEDED most? a copy of your MRI CD too? since this IS the only thing(not shown IN that report as i recall) that shows the canal compression, its vital that anyone who is doing any sencond opinions thru mailing stuff just HAS that CD too? THAT CD is simply a crucial thing for any NS to actually just 'look at' for the BEST overall looksee INTO your areas of the bigger issues.

one thing i am wondering tho, is regarding that level of where he stated he even SAW that canal issue being up at i believe the c 4/5 levels? why he would even have to crack open your sternum to simply even 'get to that" at all? it just IS highly accessable thru the anterior approach, ya know? even the c 6/7 IS still very accessable thru that anterior too as this was MY particular area where my herniation was and my NS had absolutely no problem doing the basic ACDF from my front too. it is only once you get 'beyond' that cervicothorasic/cervicovertebral junction which is where the spinal column attaches to the ribcage that anything would even 'possibly' be needed to access thru the intrathorasic appraoch. un less your hardware is the reason. and that would depend solely upon where this is andif it would be in the way. but i WOULD ask about the 'whys' of what HIS thinking is with that particular approach being needed at all since it IS a huge deal, and you simply also HAVE that right to know too.

the one really critical thing here that still just does NEED some type of real hard fact explanation too is what in the heck is even creating that extent of atrophy along with the myelo too("SOMETHING" IS simply causeing/creating that or it would not even BE there). like i mentioned in a previous post, this could be what IS an direct/indirect/mechanical type of(would have to almost be a constant and reoccuring thing too) "hit" running up against that cord by 'something, but only upon real certain 'movements of your neck/ c spine that would generate at least "some' level of actual breakdown over time and repeated contacts. a simple flexion and extension type of x ray where you DO move your neck forwards, take an x ray, then backwards, and take an x ray, just could possibly show everything seen as findings that are more impactful down to a much clearer picture of where and how that hardare simply moves at all during those posistion changes that just "might' shed some sort of light on THAT? or possibly an actual 'upright' type of MRI that shows just how things "are' when you are just in the normal posisition vs lying down which seriously DOES change the whole bigger picture of how the hardsware and certain findings just 'sit' in THAT particular posistion, which is also the more 'neutral/daily' posistion?

but you actually obtaining a 'good' CT too here, when i just consider what with MY particular case, just seeing what was even finally seeable on MY own CT scan(done a few months ago). that MRI only in no way shape or form actually showed THIS crap upon my last aug MRI because of my hardware simply being in the way with such a horrid level of blurring that naturally IS there when you have hardware at all in any body area that is being scanned by 'only' an MRI, was sooo dramatically different from one particular "type' of scan vs another. the CT just would finally get way down into the more obscured areas that ONLY a good CT even CAN see that would not at all show up on any MRI you may have had or will have, may just show the underlying generator fOR the reason for myelo and atrophy to even just be there at all, ya know?

i just could NOT even believe what was found upon only a CT without any contrast compared to my MRI since my main issues just 'happened to be' right where my hardware was with my titainium plate and screws. and with the flippin upper screws also BEING a bigger part of my problem at that. it also showed the osteo complex i have at c 6 MUCH more impactfully and dramatically than the MRI could too since that as well was simply IN that 'blurr zone" too.

i really DO think simply getting that flex and ext x ray to show what exactly goes on inside your neck/c spine area upon the most common movments we just 'do' all day long(forward and backward)just to 'see' if any part of your hardware or osteos or anything else may be what is contacting your cord enough to even create that myelo and atrophy and along with a good CT may show findings that no one even knows about yet as was my case too? the areas where your hardware simply 'sit' just could NOT have been seen all that clearly just based on the level of blurr in the more closer to the cord/inner column structures not ABLE to show themselves really at all much.

if nothing actually shows ityself with these particular tests, then they seriously NEED to try and start some better neurologic/physiologic types of testing within your body to see if you do have some type of real underlying disease or condition process that is like 'attacking' your cord as in a dystrophic type of thing? honestly allen, when i was looking for any and all 'possibles' for just even having cord atrophy and myelo too, it mostly came down to either a direct contact(usually compression for way too long) situation TO/ON your cord, OR a dystophy of some kind that would and could actually just 'do' to your spinal cord what is going on in there right now. there simply HAS TO be a real reason for this level of ongoing damage to even be there, ya know what i mean?

since most of the more impacful damage/findings appear to be R sided, that should be a clue to the future NS you see to start looking at THAT particular side too. and also how well overall your bloodflow simply IS on that particular side as well. just some thoughts here. they CAN also run a good ultrasound/doppler scan on at least your vertebrals and carotids too just running the wand over the right spots within your neck to check blood flow velocity(also looks for any signs of arterial stenosis or plaque formations too) or if there just is anything that may be impairing your esp vertebral BF since the vertebrals do not enter the spinal section at all til c spine and right AT c 6 level off the subclavian artery, then go up into your brain FROM that entry point and on BOTH sides of the outter(making these a bit more susceptable, esp having any hardware that could possibly impact arteries) spinal structure too? so they would run up to your brain from THAT particular point which would also include your atrophic/myelo area as i recall? while the vertebrals feed the back of our brains or hindbrain, the carotids feed the front/anterior brain with fresh oxygenated blood. i had to have one of these types of scans on my own neck arteries just a few months back along with a ton of other testing since i do have sympathetic nervous system damage caused by my sp coprd injuries which also regulates dilation and constriction of bloodflow. i had been having the feeling like my brain just was NOT getting enough bloodflow, just 'off"? and this type of scanning really really showed the outter/inner walls of the arteries extremely well. thankfully i had no blockages, but DID find out something no other scan had ever mentioned. i have a much smaller R vertebral artery than L vertebral. this is how clearly this scan(very quick too) can show arteries. but we DO also very MUCH have alot of other both arterial and venous bloodflow that is within or surrounding the spinal itself too that can have issues. but that would more than likely take at the very least, a contrasted type of scan to even really see?

while i KNOW we both have kidney issues allen, that mucomyst i told you about seriously DOES work in an amazing way in keeping that contrast all encapsulated so it does NOT ever actually even "filter out thru the kidneys"(just 'passes thru, encapsulated directly to the bladder where its expelled). so there is NO actual impact upon any kidney/renal function. i know its scarey with any level of kidney issues and the thought of using any contrast, i was also told by my neph to always decline contrast too. but when my aneurysm was Dxed, using all NON contrasted types of scans, i seriously had no choice at all in absolutely HAVING to have/use contrast with angiograms and my actual coiling procedure too. and based upon what i HAD been told re contrast, i was scared to death that this one tiny annie was going to simply 'kill' my kidneys too.

but that is when i was finally even told that there just IS an actual med we can take that encapsulates contrast dye and runs it thru with NO kidney filtering. and it worked for me four times allen. and with a ton more contrast than gets used during any given basic type scan even. no changes, not even a flippin point, in any of my labs after THAT many times having to have contrast removed using mucomyst. just DO discuss this med with your neph or the neuroradiologist if they need to actually just do a type of scan to check for solid bloodflow hon. this med IS absolutely amazing in what it can do for us who are suffering from kidney disease and NEED to have a contrasting agent used, esp for vascular malformations/treatment of.mucomyst(N-acetylcystine) is just simply a good solid 'tool' if needed for people suffering any renal impairment that you just also DO need to be aware of if at all ever needed. i did NOT know about this either til i HAD to have contrast used.

hope at least some of this helps. just make CERTAIN that anyone you may send stuff too for an eval or opinion HAS the actual films/CD sent, not 'only' a mere rad report allen. good luck in finding one the best here for what your real needs just are allen. and DO keep us posted on all things YOU, lol. K? marcia
Thanks for the input. My head has been spinning lately can't concentrate. Need to clear my mind to understand everything.
As to the Kidney issues; I agree there is a way to protect the kidney with medication and still do testing with contrast. The neurosurgeon that I have been seeing refuses to go that route with me.
I did ask my nephrologist about testing with contrast. This was a while ago and all I remember is that in the event contrast is used he needed to be involved in the decision making process. I think using contrast will show more of what is going on that can't be seen in the MRI or CT scans.
As to the cause of the problems I have to re-read everything you said. But is it possible that with all the surgery done on my neck and with the Harrington Rods going from C3 to about T3 level can that have an effect on my spine over time. It was a drastic surgery for kyphosis. It was done over 2 days. The Harringtom Rods alone, that part of the surgery was 8 hours long. The second part was done from the anterior position which was the fusion at 3 levels if I am correct and that was another 4 hour surgery.
More later. Getting tired.

All times are GMT -7. The time now is 08:31 PM.

© 2021 MH Sub I, LLC dba Internet Brands. All rights reserved.
Do not copy or redistribute in any form!