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Spinal Cord Disorders Message Board

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hi mahoney, sorry i had not gotten back to you sooner, but was off the radar there for a bit and could not respond. so toe numbess now too on top of everything else? are you making certain to journal alll of the many different symptoms you have felt and are now feeling along the way too? it IS rather critical for the new doc you will be seeing to know about every single feeling, loss or possible "perceptions' of things that may at times kind of feel like 'something' is actually "happening TO" your body at any given area? these are just VERY bizarre to 'feel". i had and still have this type of crap pop in from time to time. but when i was pre op cord surgery i kept getting this "feeling/perception(it felt VERY real like it was happening TO me?) happening to right under my shoulder blade with a very very profound type of "prying/torqueing' sensation? it felt exactly like someone was trying to actually pry off my shoulderblade under my R? very sick and constant too til my cavernoma was removed from my cord.

once the actual cord itself becomes as impacted as yours just is, alot of really insane things can happen anywhere below the level of injury or impact. this DOES seriously sound like your level of compression is really becomming much more impactful(either deeper or more to one side, but still 'against" the cord) and progressing/shifting/changing in some way shape or form. this can also be caused by reoccuring inflammation, thats just alot more 'there' vs before? are you back onto the neurontin again? if not, it would probably be a good idea to get back onto it.

we have within our cords what are called 'spinal tracts? there are 20 something of them that run like many long cables inside a bigger cable(the cord). these are what actually govern body responses or carry the signals(from nerves to cord to brain and back? or the opposite from the brain.) to very specific areas on up and back from the brain that make things IN our bodies simply 'work' the way they should. each and every tract also runs to a very specific area of the high function areas of our brains. anytime the impact to the cord becomes very impactful, it can also very much, depending strictly upon where and what part/tract is being overly impinged or compressed, also can create very deranged or "scewed" signals or stop the signals completely too, but that 'complete' is pretty rare. but this is kind of part of why you are feeling what you are more downward in your toes now? there is also sensory and motor nerves that DO run thru the cord itself as well as the actual nerves that come out of the cord at every level(spinal nerves).

when my surgery took place i lost the nerve that went to my feet as in the motor, but FROM the INSIDE of the cord and not the actual spinal nerve? it gets pretty innervated from different sources in many ways inside that cord itself(tracts,nerves, upper motor neuroms lower motor neurons, gray matter/white matter). but as for the tracts? my whats called the spinothalamic tract that of course runs to the thalamus(governs mostly pain and temp) was heavily damaged along with my spinocerebeller tract that runs to my cerebellum. the cerebellar is what governs our gait, balance proprioperception(this is the ability to simply still know where any of your extremities are when your eyes are shut, or as they say, 'in relation to space')along with certain aspects to the eyes as well as a few other things. i lost proprio to my legs only when i close my eys, esp in bed when trying to go to sleep. once my eyes shut, i seriously do not know how my legs are as in the posistion, until i move them and touch like the sheets or something? very crazy. but they are fine when i am up and walking around. but it did affect all of what i mentioned above here too with 'just' that cerebellar tract having suffered real damage. and that spinothlamic is where your pain pathway runs thru so my pain signals in certain areas now are very 'deranged". that was the word my NS used to describe how my pain was now going to be interpretted there post op 'deranged pain and pain signals' and boy was he right.

these are just examples of what the tracts do so you can understand more about what potential tracts given the area of impact are in your cord. depending upon your actual symptoms that you are keeping track of will help alot once the surgeon sees you and tests certain areas for your responses along with what you tell him? he will know just how better impacted certain areas of your cord may be if there are specific things in areas that are feeling different in you or are impacted, esp when the actual spinal cord is THAT involved like yours is. i did not have a clue really just how the cord actually just 'worked' at all pre op, but i sure as heck had to find out post op when all kinds of insane things just started occuring, or were lost as well. but my situation was caused by a vascular glob i was born with IN my spinal cord that had to come out becasue it was bleeding and that scalpel, thankfully your 'impact" is stemming from the outside in.

if you have not yet done so, make sure to write down any and all good questions you also need or want answers to too for that appt. trying to actually remember everything you WANTED to ask when you are there and being told things, it can cause you to not recall the really wanted and need stuff to be asked. been there done THAT one. and also make certain to have the CD or hardfilms with you too, that IS critical for him to see tomake HIS impression/interpretation of how HE sees things. a mere radiologists report,in many cases alot of surg3eons will not even bother to look at since the surgeons just already 'know' where and what to look for sooo much more than any rad could do. then you will get HIS much more informed/experienced opinion too.

i wish you lots of luck on the appt friday. hopefully he will be able to tell you much more esp about that c 6-7 area and how impacted he feels it is. and tell him EVERYTHING that has happened or changed for you, even the "smaller stuff" can mean something much more than one would think. and of course that is what that journaling is for, so you also recall the small stuff that you felt at all? please DO keep ua posted hon. marcia
Thanks for responding Marcia!

There is so much I don't know about what's going on inside. Yes - I have been keeping track of everything, and even created a little calendar of the doctor's I've seen, meds prescribed, ESIs, etc.... hopefully that timeline will help too. I did restart my neurontin, several days ago now.... late last week maybe? 1 tab 3 times a day. The pins and needles and pain in my arm continue, so I upped it to 2 late yesterday. Will the neurontin help the numbness/tingling? or only the pain?

The pain in my neck is really bothering me too. I've read that ACDF might not help the neck pain? Is this true? It seems like it should though... since that bad disc will be removed... I'll keep you all posted as to what the surgeon says. Thanks!
just another lil FYI when it comes to the neurontin? i don't know if you did this before you upped it, but you ALWAYS need to have this done BY the Rxing docs orders. its just a slower taper is better, and with this type of med too, the doc really does need to be the one to decide to up it. it "usually" is NOT a huge issue to do, but just always make sure to call that doc and ask before upping any doses actually on any meds unless it states otherwise on the bottles instructions. i would "think" he would agree with what you did, but DO make certain he knows about it, esp since this med, once you have been on it for awhile and going up on doses/mgs, you do NOT want to suddenly find yourself without ANY doses left when you DO at that point, need to be taking it very regularly since the brain does get used to it. thats the reason for the tapers up and off of it i mentioned before. just ALWAYS check before.

it may or may not 'always' help with pain. it kind of depends more upon the real underlying generator OF the specific type of pain. what neurontin actually does for nerves by calming them down is why this was originally created for epilepsy patients too. it calms down the "over firing/misfiring" of the nerve synapses within the brain that causes siezure activity. thats why they i guess thought originally it might also help with pain that is also generated by some inflammatory nerve signals as well, and it does for some. tho it is considered as an 'off label use', if it works, it works ya know?

i was on it too back early on when i had my herniated c 6-7 too. i got up to around 3200 mgs at one point and still never ever really felt like it worked for MY radiculopathic pain. but different meds work differently on certain people and how the nerves are actually even involved at particular points too. but since you DID actually have a good response originally, it is more than likely probably helping somewhat? you just may need a good raise in the dosage when you see that doc tomorrow. i had like three different docs all raising up this med on me(over like three years) anytime my pain got worse. it was stupid really, but thats what they do even tho it was NOT actually doing anything for me. there ARE also other anti S type meds other than neurontin too that can potentially help as well if this does decide to stop working on you anymore. but i would try and stay with this since as i said, it actually 'connected' with your pain at all?

whether or not an actual surgery of any type will actually help with pain really DOES involve so many different factors. in the c spine case with ACDF, it can either totally take away your pain, or 'some' of it, but in your particular case, if they do all that really IS needed up there esp cleaing ANY areas where your nerves are being impacted or impinged, it should relieve the pain. and of course just getting that real compression OFF that cord before a condition called myelomalacia can set in over time and pressure on neural tissue. it can sort of 'kill off" certain areas of very direct(usually the smaller the area pressing into the cord is more impactful than a larger more spread out type of compression would be)impact within or on the cord levels if the pressure is just THAT hard or very directly INTO an area.

but back to nerves, its usually the longer you wait to unimpinge ANY nerve pretty much anywhere within the body, the pain CAN 'imprint itself' upon that particular nerve(neuropathic pain vs what you have now as radiculopathic), or losses of sensory that one had pre op may not come back either. it all depends upon how compressed or even closed off any given nerve is and how it may heal as well. as an example, my hubby had a herniated c 5-6 and a severely stenosed c 6 nerve that was making the entire forefinger numb and horrid radiculo pain? after he had his ACDF done, the horrid pain ALL went away(thank god), but he still has a never regained sensory finger TIP only left behind that has not come back in the 15 years or so he had it done? but at least that pain went, god it was awful to watch him suffer like that. but work made him wait way too long. but what you have going on in your lower c spine esp NEEDS to be relieved since your symptoms just ARE appearing to progress into more 'bodywide" than just the like upper torso level now?

once you see that surgeon tomorrow, he will be able to at least give you his overall opinion on what HE feels really needs to be done with that c spine as a whole, since you DO have another area of cord impact too as i recall? soo, now you just see what he thinks and go from there for now. but i can tell you, if my cord were that distorted to what you are now feeling from it, i would go ahead and get that pressure relieved esp that c 6-7 as soon as possible. living with spinal cord damage is NOT fun at all. what he will decide as to what needs to be done really is based more upon what IS really truely being impacted and how much. if any real tracts are being impacted, along with just the overall level of the herniation there too, and IT'S impact alone(nerve and cord), i am sure he would want to go in and do the ACDF. this IS of course only my lil opinion here.

the one really important question i would ask him tho, if this IS going to be done? ask him if he will be using whats called "intraoperative monitoring" on you during the surgery. this just IS the very best and safest way to actually do a surgery when the cord is being decompressed or just even 'involved' at all during a surgery. they just place little electrodes on very key places(arms legs mostly) on your body before the surgery that will monitor your overall possible motor and sensory responses during the surgery so the surgeon simply knows, before they 'do' anything that may actually cause further damage, the monitor screen that the trodes are connected to will tell him that whatever approach he is using, he needs to change BEFORE any real damage gets done to YOUR cord or nerves. this is usually done by a 'neurophysiatrist'(these types of docs DO KNOW about nerve and muscle and what is or is not 'normal with them too) whos ONLY job is to keep an eye on that screen and you during the surgery. this is kind of like an early warning system for the surgeon. and as i said, i can really prevent damage before it could happen. if the surgeon tests an area before they actually go to do anything,and that screen shows anything abnormal, they just try and do things from a different angle, they also DO do a baseline check of ALL of your sensory and motor responses BEFORE that surgery begins so they WILL know if anything as far as your overall nerve flows have been relieved and gotten better or something else may have changed at all. just DO ask him if the surgery is going to take place hon, it really is a good thing to have goin on while you are in the OR with what they would be doing.

good luck with the appt mahoney. hopefully this can be taken care of soon and with no damage done or left behind. but DO ask questions and make certain to write them down in a notebook and also to write down answers too, lol (i forgot sometimes). it may not hurt to try and bring someone else with you for that consult/eval too if possible. sometimes when we are just discussing really critical things with surgeons, we can tend to get hung up on certain things and not always really 'hear' everything they are telling us when we are by ourselves? i ALWAYS bring at least my hubby or my mom, or both when i had to have my cord surgery consults. let us know how things go hon. take care, marcia
well at least you did have permission to "play" with the doses. but he really should have told you about the ways to go on and off this stuff ya know(just always read thru the Rxing lit, or ask the pharm when going onto any med you have never been on before esp)? it could possibly be you had some changes up there and things that were being compressed are now not AS bad(could actually feel MORE pain since you are 'feeling more in that type of instance) or got worse, as to why the neurontin is not seeming to work as well. but you were also, as i recall also on like medrol or some other type of heavy duty steriod based med before too the last time you were starting the neurontin, back when you HAD felt some relief?

once that steroid wears off, kind of like with the ESIs too, you can feel kind of a rebounding of pain since it simply is not being kept from inflamming anymore. some people can have days or weeks or months of relief from using the steriods in the various forms, then others may not get ANY real relief, or very short term depending on how it 'worked' on them specifically.

neurontin for me was one med i never got relief from, but also never had one single side effect from either. it felt like i was taking a vitamin or something over the two and a half years i was even being tapered up on it. i kept wondering, just becasue i did not 'feel' like anything good OR bad from that med, that it was some type of "non med' formulation they just give to people so they 'think" they are getting 'something" for their pain, seriously. i just expected to feel some side effects from it. but other anti S meds i have taken like gabitril, which is a more 'purer form of GABA that is in neurontin as well? that one totally made me want to just sleep, always. it never went away no matter how low we went with like my morning dose even, or a pretty long time on it either. just made me soo flippin tired. so what you are feeling as fatigue, can totally be from the raise you just did. sometimes it just takes like a week or so for the brain to get used to the raise, then it goes away. ya just gotta kind of keep in mind exactly what these types of anti S meds even 'do' for people with siezures too by calming down over firing nerves, so fatigue just could be possible depending mostly upon overall mgs you are on.

i was kind of assuming that this particular appt WAS a consult eval? i am sure he will let you know what his overall opinion actually is while there. i just hope things either go okay or went okay since i do not know what time of day your appt is/was. no one ever WANTS to have to be on any of these meds and go thru all that is just a real need to try and live a normal life either. but if they CAN 'do" something to help our pain or make us more 'able' and feeling usefull, well, it is that lil trade off we have to live with. hopefully in your case, once they can get in there and just do whats needed, you wont have to be on anything after your poat op period of healing is done. i hope it went well. and DO let us know how things went with the doc. is this a neurosurgeon or what exactly? i guess i never asked you that. marcia
So, I went for my appointment today. In a nutshell, he looked at my MRI, did an exam and the first thing he told me is why I'm in this predicament at 39, and with no obvious injury. I have a problem where my connective tissue is unusually flexible, therefore it's not providing the support my bones need.

We talked about what I have tried to date for my cervical spine, and he suggested I give at home traction a try for two solid weeks. Looking at my MRI he said if i end up going the surgery route - C6-C7 would be the disc to fix. The one above immediately above it isn't great, but it doesn't warrant surgery, and the one above that is bulging the tiniest bit. He said if I want to address my neck and arm issues he would do an ACDF. If my arm pain/weakness is my only issue, a posterior foraminotomy. He cautioned me that the ACDF could put pressure on the levels above and there is a chance that we could be fixing C5-C6 down the line. I appreciated his honesty.

I'm hoping this traction gives me relief. I did it tonight.

Oh, and I asked him if I could ever run again. Before this whole thing started, I definied myself as a "runner", albeit a slow one. He said that given this issue with my connective tissue; if he were me, he would never run again. So, I guess it's good to know that whatever I decide, running is probably out of the question. Until today, I had been thinking that running again might be an option after a surgery. At least I am clear on something at this point.
well, at leasat it appears he knows what he is doing and VERY forthcoming as well. is this an actual neurosurgeon mahoney, or what exactly? it is ALWAYS, with ACDF going to place the level above and the level below the area of fusion in a bit more jeopardy for problems when its simply even done. it does displace weight within your c spine and a few other "alignment" issues can, not always, pop in as well(you simply have an area that will be 'stuck together" vs moveable at all anymore that can weaken above and below). but overall, in some cases. it still IS your best bet for releiving heavier compression againt the cord like yours is. that simply CAN progress, ya know?

but as far as real flexability goes after a ACDF at C 6-7 goes, which just happens to be the very same area i also had fused too, i really did not lose much there. i could still go forwards and back with my neck totally, but lost some of the more side to side flexability as in like trying to hold a phone between my shoulder and my head/ear, but still am able to move it sideways. just not 'as much' as before.

what did he base your connective tissue problem on exactly(how did he Dx that in you?)? i am just wondering about the fact you have what was referred to as a 'subligmentous(sp?) type of herniation that would actually have, the disc itself having gone "under" whats called the ligament of flavum that lies between the level of where the the structual part of the spinal is and over the actual cord itself? with 'sub' just being there which means "under something", it would appear that your hernation goes UNDER that ligament in some way, somehow it 'breached" the ligament(either around it or actually thru it in some way) and then into the cord itself in a much more direct way. this can happen for a few different reasons, but it IS much more directly impactful to your cord vs one that is simply 'pushing' that ligament and the dura level(where that CSF lies within that surrounding membrane) INTO the cord would be.

ya know, its very interesting to me that you too have a connective tissue type of problem. i have this too but from having a bizarre type of inherited kidney disease that also happens to come with a connective tissue problem(missing some level of whatever gives esp blood vessels esp the flexability they should have, thus at much higher risk for vascular problems which boy, have i ever had). there just could be an actual real reason for that part of what he told you that should be also checked into too. but my connective crap appears to be the opposite of what you actually have. strange really. but it DOES really explain the 'hows' in what created such really incredible levels of problems with NO real history of actual trauma(and just how that disc was even able to get under/around that ligament of flavum too). you just really DO have so much going on up in your c spine mahoney, its really insane that the overall of what you have is just THAT impactful to your cord, or just even 'there' at all. but running IS a jolt to the spine(among other areas, esp the knees), but usually moreso to the lower levels and not so much the c spine like you are dealing with? but having a real hard solid reason for it, well at least you know what created that c spine mess.

i too am wondering exactly why they would have to go posterior to simply clear that foramen vs doing it anterior when they do the ACDF? did he specify the 'whys' in that? you just DO really want to avoid if possible any procedures from the back if possible depending upon what they may simply have to remove to do it? if they have to remove ANY of that stability which is any real boney areas at all back there, that alone can present problems that i am dealing with right now from losing the boney prominences after they had to go into my cord that way(but MY area was a tri level lami, and not what you would have). but this also cuts thru alot of your very thick heavy muscle too(can set you up for some bigger myofascial/muscle crap down the road post op in some cases, depending), vs avoiding any and all muscle by going anterior. i am simply wondering the "why' in his thinking, going the posterior approach there at all? did he explain that to you?

traction personally kind of gives me the 'willies'. while it really CAN help to try and pull up and pull in certain types of spinal issues, you just have such a very pronounced and 'assumably" under that flavum type of cord impact/herniation. that would kind of worry me, just myself here. while it CAN work for more minimal to moderate types of herniations that are pushing, along with everything else that ligament 'into, to more 'out". if this is indeed under the ligament, the whole herniation would have to "pull out" from UNDER the ligament to get it back into place again, or just relieve 'some" real compression? its just a very 'blind' type of therepy that you cannot really 'see' what is actually going on up there during this and after once that traction comes off and everything drops/settles back down again? ya know what i mean? traction is under the same type of 'catagory' as chiro adjustments("blind adjustments") where things are being 'moved' and 'adjusted' but there is no way to actually 'see" what just IS moving in there or 'how'(what way, as in forward, backwards or even sideways since most issues/herniations during traction will tend to take the path of least resistance in trying to get "back' to their proper place) either, so you have to really be careful with it.

while i DO so hope that it can help, just make dam sure mahoney that if you should actually 'feel' ANYTHING new, or odd or something even MORE profound in your upper or lower torso, just STOP the traction and call that surgeon immediately. keep a journal of JUST that traction therepy too and anything that occurs during and after you do it hon, K? hopefully it will help, just be vigilant here and not go beyond what YOU can endure or if something suddenly changes in a more profound way(esp if something NEW should pop in). you have to remember you NOW also are having losses/changes in that lower extremity too that you did NOT initially present with as well. hopefully it WILL help alot with your other areas much more so those wont be having to be dealt with at all and the surgeon can concentrate on that worst area at c 6-7.

thanks for the update hon. when do you see this guy again? take things easy and be careful with the traction too. and keep us posted, marcia

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