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Spinal Cord Disorders Message Board


Spinal Cord Disorders Board Index


mj, i thought of something yesterday that was kind of a "duh' moment that i don't know why i did not think of this before kinda thing? find out just EXACTLY what real level of training the second NS actually has, and more importantly whether or not she even HAS the actual training needed to even go into that spinal canal at all? this WOULD most definitely influence what she has been telling you this whole time if she did not even go thru that 'extra" training to even GO into that canal at all? like i mentioned before, all NSs are NOT at all created equal in their experience and level of training either? the training just to even go into that canal is YEARS of much more in depth and ongoing training and really understanding the inner tracts and cells that run thru that actual cord along witn ITS basic anatomy and physiology too? than the 'basic" cannot go into that canal training would be so many do not even go there?

this is one huge thing that NEEDS to be found out by YOU. you should be able to look up some info on her or even ask her outright if she even DOES have THAT more experienced 'inner working' knowledge of now the inner part of the spinal simply CAN show damage at all? i had my second NS who also did my actual c spine surgery(decomp fusion from the front) and hardware placement after i did not actually fuse keep telling me that this insane off the wall 24/7 ALWAYS there "perception' of what honest to god felt like was actively "going on' under my R shoulder blade(very intense 'noxious prying and pressure). tell me over and over that what i was feeling was in NO WAY related to my cavernoma located on the L side of my cord right AT the c 8 nerve level. and this WAS also someone who told me right at my initial consult that if that cav needed to be removed, that he was actually 'trained" to do that for me, but never actually told me what would really indicate that 'need' at all or that my cav had ALREADY bled at least once even before my initial MRI was actually done either?

now move ahead to after this idiot placed my plate and four seperate pedicle screws in the very front of my column right at c 6 7(two screws went into the c 6 vert and two into c 7 vert) and somehow managed to actually very solidly impinge my c 7 nerve root with the freaking pedicle screw which is what actually prompted me in the very first place to even seek out that help from the U of MN where i found 'amazing NS #3" at?? believe it or not, one of the very FIRST things he confirmed for me was that oh yes, that cavernoma was definitely responsible for the insanity going on under my blade. i was just stunned,and sooo freakin confused at this point since the other 'supposedly 'trained to go there' NS repeatedly told me there was simply 'no way' it could be innervated? by the by here, this third opinion NS actually 'taught' my second NS but obvioulsy that idiot was like missing the day number 3 was going over BASIC anatomy and innervation of what the cord does and how it actually even innervates the vertebral levels from even HAVING something like the lesion i did just even "there' inside my cord at all? i was just totally stunned and dumbfounded that this number two told me he WAS fully 'trained" and yet could NOT connect the little 'dots of innervation" thru the cord to the vertebral levels at all which is sooo flippin basic? my NS three actually whipped out a piece of paper and DREW me how this was even possible? god what a flippin relief to actually have someone confirm i was not crazy? the thing is, it comes down to tract cells(you have 'ascending and descending tract cells within the cord itself) and the way they innervate two levels above and two levels below at the actual outter VERTEBRAL levels? this did place it right at T2 exactly where MY lil nightmare of noxious hell was to a flippin T.

i still cannot believe that someone who has that training to even CUT into someones cord actually does NOT know how the inner cord simply can innervate those vertebral levels at all??? sick actually. but like i said before experience and ongoing training learning from patient experience? you simply cannot beat that for learning and gaining knowledge from each patient. but this man still scares me to death thinking he is doing this stuff to peoples cords and probably telling them that certain things they are feeling post op or even pre op are simply 'impossible'? while the patient goes insane from "something' and the man is simply clueless to what 'their" actual issues are and how the basic inner cord anatomy and innervation simply actually ARE too? and this WAS an assumingly to me anyways, a very knowledgable seemingly caring and very personable type of NS who i actually trusted but HATED his freaking nurse from hell.

but it was only that impingemnt which WAS locking up my right neck and my right arm/fingers had an almost "constant' form of horrid radiculopathic symptoms that would NOT or could not at all seemingly be explained by my NS or his witch of a nurse who never EVER told me that in my own MRI report it DID state a i had a very impinged c 7 nerve root that i ONLY knew becasue I had gotten my own copy of that report and had it sitting in front of me when the witch called me and actually TOLD me that everything looked 'fine' and their were NO findings to explain my horrid symptoms, when the whole time she KNEW but was witholding THAT critical info from me over the phone since her 'boss' actually did this during my surgery. i was just sick when she went on and on how everything was just seemingly 'ducky'; while she knew the whole time and more critical here, i had been suffering sooo badly from HIS huge F up. you could have heard a flippin pin drop when i asked her about that finding at the bottom of page one where it STATED i DID have an impinged c 7 nerve root?? god that was fantastic to hear her on the other end doing what had to be a total freakout knowing i KNEW she had just lied to me over the pnone?? that DID feel soo good aftwer what she herself put me thru there. but it just was that impingment occuring tho that IS what actually prompted my going to the U of MN where i now KNOW without a freaking doubt i was 'ment' to end up just considering the man i did happen to see there who actually knew everything the other two NSs did not? that knowledge and expeirence from just seeing sooo many patients over time IS so freaking crucial mj, it just IS.

but i lived with this insane 'unexplained" perception from hell that honestly 'felt' like someone was simply standing behind me with a freaking pry bar and trying to pry off my shoulder blade. this prying/torqueing sensation and huge amount of underlying and outward pressure from absolute hell just would NOT actually stop unless i ground that blade into a nice solid wall and held it hard against it. and still, NS two kept insisting that this just was NOT innervated from my cav at all, so i totally believed him andf lived with it. and he also really really minimized what could have very easily paralyzed me with one more bleed which i am assuming mr clueless also did not actually realize either? it makes me shudder when i think of what would have happened had that idiot not have actually impinged that nerve root?

the one big thing here mj,it we DO tend to take our cues from our docs or NSs in this case? whatever "their impressions" just are and what they tell you IS very much what we think only becasue qwe do NOT actually ahve what we simply assume 'they have" as understang of our situations and that overall good inner working knowledge when in many cases, they just do NOT ahve a fliuppin clue only becasue THEY do not know about something either? that IS the bigger thing that i had to learn the heard way with my nightmare.

but DO find out for your own sake here mj just exactly how many years these two have been actually practicing and what real levels of training they have had as well? trust me mj, this DOES sooo matter. ALOT more than you may think it does. i can almost guarentee you here with what you just have esp with that cord compression there, that if NS # 2 does NOT ahve that extra trainig and inner working knowledge or simply has not even 'done' enough surgeries into someones cord/canal area, you are NOT actually even getting the very best possible opinion from HER at all. thats unfortunetly how this all really goes.

just what state do you live in? that would possibly help in giving you some better options. unfortunetly even getting INTO that mayo clinic, and i know it is like this here in Mn with the main mayo right down south of me in rochester with what 'they' require from you to even allow you to 'see them' there? usually you just do have to have "something' more rare or unique that simply NEEDS the level of expertise from "their NSs before they will even "let you' see them kinda thing? i know that is how it is here in the main mayo, but it could be different at the other 'branches' they now have kind of scattered around thru out the US now. but it does take more than something that can be usually handled by any good experienced NS to get in there(not to mention the overall 'wait' to even GET the appt itself for consult/eval). just letting you know that there hon. this is just what i have heard from people i know personally who either DID get into the mayo, or 'their case" was not 'right' for their facility? they just DO get alot of people every year wanting to get in there to even get the 'best overall opinions". but depending upon just what you have wrong, in many cases, if you can get help from a good experienced and knowledgeable NS right where you live? your chances usually are pretty slim at even being 'allowed' to even GET that appt. but like i said, this IS the main mayo here in MN and not the other branches out there which could be different?

if anything? i would do what i did and look for any really good university teaching hospital that may be close to where you live? this was MY place where i found MY amazing opinion and the man i NEEDED to be seeing for what I had.

but overall mj is the reality of what you just DO have there at all with that cord compression and other findings that simply cannot be 'fixed' without some type of surgical intervention. i just do NOT understand at all the second opinion you recieved from that other NS. the mere reality of YOUR ongoing symptoms combined with what just ahve been very consistant real findings upon your MRIs here hon, you just REALLY do need to look at the true reality of what it is you have there and what would just more logically be needed to make it better? any surgery takes a huge leap of faith in trusting that you simply 'are' indeed doing the "right thing' for yourself. sometimes you have to simply really look at what the reality just is,and go with what needs to be done? believe me, i KNOW what this is like hon and so does jenny. but there comes a time where you just have to really accept that surgery fact that is simply really needed for the better overall 'you" here too? what is it exactly that you are hoping to hear from another NS? besides you do not need surgery,lol. we already KNOW that one.

just look at what real overall training and experience the two NSs you have already seen actually have before attempting to go find another opinion hon. you could already be, at least with that initial NS, in some very good hands and not even know that yet? it HAS happened to me with my surgeons at times with as many as i have had to have that i found out after that i was operated on or my aneurysm was coiled by the tops in their field and i did NOT ahve a freaking clue til after? stranger things have happened hon.

you just are never going to ever 'feel' that 100% comfort level with this type of potential surgery you need, ever. but as long as you KNOW you have a good and experienced knowledgable surgeon who IS doing the best possible things for YOUR level of damage/injuries, and answers ALL of your needed questions, that IS a about as truely cloes as you are going to realistically get here unfortunetly. i am not trying to bring you down mj, or burst your bubble of hope here either, but only trying to get you to really see the true reality of just what you have there with the findings and what truely needs to be done for the best shot at good stabilization and for you to be able to simply get on with your life again.

i have asked this question before, but other than what you stated as 'changes in reflexes' you never clearly answered this one and it IS really crucial? do you actually have the yhypower rflexes when the area below the knees are simply tapped with that hammer? if you DO, then that cord IS most defintiely being impacted to the point the compression NEEDS relieving before myelomalacia sets in which just does occuer over time when the cord is being compressed and the tissue under the hardest hit area(s) of true compression has no blood supply or CSF to keep it bathed and healthy. i wish i could tell you that you don;t need any surgery here mj, but the damage you have just IS that really impactful right now and will stay that way til it simply is well decompressed and relieved. if you seriously would feel much better in getting one more opinion, then do it. that IS your right to really be the best informed patient and to really know that this just IS your only real true option to get you back up and running again. hopefully that wait if you go this route wont be a long one. but i would let your NS number one actually know that you are right now at least, canceling that surgery so he can place someone else in your spot. he just does need to know what your overall plans are too here hon. you just do NOT want to piss off any surgeon that you may just really need to go back to depending on how things simply go here with opinion three, ya know?

i and i know jen too just really want everything about you and this damage to turn out for you in all the very brst ways hon. but sometimes you just DO have to take that leap of faith here when it comes to any surgery and feel that you just ARE really doing the best possible thing you can for yourself and after asking all the questions and really seeing what your films and the best NS opinions based upon true knowledge and experience and YOUR ongoing symptoms just tell you too? but we ARE here for ya mj, always,K? Marcia


good luck with the MRI jen, i DO hope things are not as bad as you think or feel. marcia
well welcome back hon, we have been wondering how things have been going all this time. i am wondering a couple of things tho? your ulnar nerve is actually way down at what is also called the c 8 nerve pretty far down from where you had your surgery at? unless you have ALOT of swelling there, you may just have to wait and see how things play out over the next like four weeks or so to really know for certain if there is anything that is actually "wrong' with that nerve up at the c spine level or the areas where it simply can be impacted from in the neck area and the route it takes down thru the full arm, including the very outter edge of that elbow area too(the ulnar crease?) and then down into the last two fingers of your hand where you are having that tingling? anywhere between that c spine and the wrist area could have some impact on that one nerve, so you will just have to kinda wait and see how this goes? but after a certain period of time paseses, they CAN do an EMG/NCV study up that whole arm(if needed) to check for possible areas of impingment or affectation too? so they will be able to tell you if this keeps up, just exactly what area from the spinal on down that nerve is being impacted.

even having that posterior approach at all(i had two surgeries on my c spine from front and my cord surgery where they went thru the back?)REALLY pisses off the muscles back there in some cases very severely. i have had muscle problems in my upper back and neck area from where they sewed me up with what was a very large incision. but i personally feel at this poihnt that my main problems stemmed from WHO stitched me up after they had closed the cord layers? it just DOES take a while for all that level of muscle and tissue to calm down? do they have you on ANY actual muscle relaxers here like valium? for what you went thru, and how the vert at c 6 simply is, if this is ONLY being pulled on from muscle, then the relaxers with some light massage at a certain point should allow things to calm down as the wads of tissue called trigger points that just come along for the ride with having the surgery that angers the nerves that shoot out signals to muscle/fascia and of course the mucles simply being cut too, should relax up for you there.

the only other thing i can think of here off hand as to why that one vert is not where it is supposed to be sitting and was not pre op? the NS could have possibly used a bone graft that was simply too small, or not large "enough" when he placed it to keep it nice and snug as it should be? or when he placed the hardware, it could have 'looked' nice and snug, but when tightening that hardware up, it could have also pulled a bit too much on that c 6 which would have pulled it up a and kind of out of its norm posistion to some degree too? alot would really depend upon just HOW the plates and screws actually were placed and into certain vertbrae? but the fact that this, from the way you are describing this, the verts are sitting slightly pulled up at one side than the other, making the disc kind of angled?? is that how this actrually looks? just having hardware on only one side if that graft was too small, that kind of "is' what could occur just thinking of basic mechanics? kind of a 'wedge type effect? i am only assuming here that he just did a basic x ray like in his office vs an MRI to see what you were told? an MRI may help in seeing certain things a bit more clearly, but the downside of having ANY actual hardware in the c spine and doing MRI is that any metal within that spinal will kind of naturally blurr upon MRI, but on x ray and CT, it does show everything VERY clearly?

but i would definitely ask your surgeon if it was possible that he simply used a bone graft that was not large enough to begin with here? that would be what I would think could be the more common or obvious problem here? it just makes the most sense considering how things just 'look' in there and the way they are sitting now too? but DO make certain that he is giving you some good solid muscle relaxers to try and get this to let go a bit and stay relaxed? was there ANY findings on your pre op MRI that mentioned that c 8 nerve at all?

unfortunetly time is the bigger thing here in just seeing how things go for now? sorry i cannot give you any definitives right now hon. but time is really what is going to tell just what may or may not be an undrlying problem or not here? some things, esp within the spinal just take time. but i do NOT think this has anything to do with anything that you yourself would have done to create that abnormality up there? more surgically related possibly if anything. just keep hangin in there and see how things go from here MJ. hopefully this will settle back in and kind of 'fix itself"? just keep us posted. marcia





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