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Spinal Cord Disorders Message Board


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I definetly understood a whole lot better after finally finding some info on the different and totally bizarre symptoms that i am experiencing.i have different areas of totally different pain caused by damage to different ares inside of my spinal cord.

before my last surgery, all i was dealing with mostly was r sided radiculopathy,some numbness and tingling in my fingers on both hands and by far the worst was this hidious non stop gnawing pain under my R shoulderblade,that felt like someone was trying to pry off my shoulder blade with a crow bar or something.it was really intense and usually ran at between a seven to ten,when really flaring.The only relief I got from the pain and icky(yes this is a technical term,lol)pressure/gnawing feeling is when I would stand up with my back facing the wall and just grind my shoulderblade into the wall.i mean really grind it in there.That seemed to really equalize that pressure somewhat.

i have so many areas that are damaged and each area has its own weirdness with regard to pain and symptoms.i had what is called a cavernous hemangioma that was discoverd lurking inside of my spinal cord.I didn't know it was there until i had my first MRI to try and determine just what disc was herniated up in the C-spine.once this little bugger was found,I had to endure all kinds of testing to determine just what the heck it was.it was basically a big(4x6x8mms)glob of venous blood vessels that formed inside the cord and was probably with me since birth.i finally ended up at the U of M and seeing the head of neurosurgery and he determined that the hidious gnawing pain that i was having was coming from the hemangioma,and it had already bled at least once.he also told me that the risks of it bleeding again in the very near future were quite high.if it did, i would most likely be suddenly and permanently paralyzed from the chest down.i had to make a very difficult decision .Do I leave it in and wait for the day when this little sucker would just decide to let go and try and live with all that would come?Or do i go in and try and have it removed under more controlled and monitored conditions,but still end up with certain damage to either the fine motor in my hands or damage to my legs.as he told me that the hemangioma was not in a favorable spot for surgery.It was very close to the wall on the posterior side of the cord.but the nerves to the fine motor and to my legs also just happened to run right between the hemangioma and the cord wall.so i knew for a fact that I would end up with some damage, he just could not tell me just where or how bad.

The most damage ended up in my L hand,but there were also other things that were hit or effected by the removal.I ended up with what is called horners syndrome which comes only from some sort of damage to the sympathetic nervous system.i looked in the mirror one night as i was getting ready to brush my teeth,and much to my surprise, my R pupil in my eye was huge but the pupil in the L was pinpoint(mostly due to the narcotics I was on).This was about day 12 after my surgery, while I was in acute rehab.I was told by my physiatrist that the wierd pupil was being caused by SNS damage.This syndrome also does not allow sweating on the same side of the face as the affected pupil,and also causes a very significant drooping of the upper eyelid.but because this syndrome appeared, it proved beyond doubt that the surgery had damaged my SNS.

also, because of just where this hemangioma sat in the cord, i also ended up with what is called partial Brown-Sequard syndrome.the lesion was sitting smack dab in the middle of what is called the spinothalamic tract.It governs your sensations of hot/cold,and your ability to feel surface pain.from just below my r breast and on down (exactly half of my body,if you drew a line from the genital area and passed halfway through the belly button and on up to the breast.that whole right half is the affected area)to the bottom of my foot, i cannot feel it say when i get into a hot bathtub?my r side will feel extremely cold but the L feels the normal hot.The same thing happens with regard to feeling cold.If I went outside without a jacket on(I live in MN)when we had like ten degrees out there, my whole body except for that right side would just feel like it was freezing but that r side actually felt like it was generating heat.now this is the wierdest thing,with regard to not being able to feel the surface pain?while my sensitivity to touch,even light touch is still there, you could take a needle, and jab it into anyplace on that R side, even that really sensitive stomach area?and I would feel absolutely no pain whatsoever.I feel the sensation of the needle touching me, but no pain.Now, is that not the most bizarre thing you have ever heard of?it is so hard to try and explain this to other people.also because of the thalamic tract damage, i ended up with yet another syndrome called central pain.this is not even what i would consider pain,it is a nonstop form of torture.the skin feels this constant burn/sting sensation with this lovely demention of feeling like your skin is being ripped off of your body.It is just plain hidious,and it does not respond well to most meds I have tried.Even a slight breeze blowing over the area will cause the pain to go from like an eight to a ten plus in a matter of seconds.it just happens all the time and i don't even have to be actually doing anything to trigger it.it comes and goes whenever it feels like.

i also have some very significant spasticity in both of my legs and am right now trying to deal with a totally messed up and exremely painful R knee.because of that constant pulling of the spasticity I developed what is called a bakers cyst deep inside the knee.when this popped in one day, it was then that i knew the not being able to feel pain thing was strictly suface and not deep as the knee is constantly screaming with a horrid deep non stop bone ache,and also has some symptoms of the central pain.

it was not until i started researching the neuroanatomy that i discovered that the SNS does not even run anywhere inside of the spinal cord and am wondering just how my NS happened to cause damage to it.I am right now contmplating a malpractice suit against my doc.i was never told about alot of things here and i am currently trying to get disability as i will never be able to go back to work with all of this crap going on inside of my body.the one thing that really is motivating the possible lawsuit is the fact that,nowhere in the op notes from my sugery,does it say anything about them having to stop my surgery bacause they hit and lost a nerve on the monitor and had to stop with 10 percent of the hemangioma left inside.i am also not getting any help from my nSs office with regard to the brown sequard Dx or the central pain syndrome.There is absolutely nothing in my med file or the hosp main medical files that state any of what i need to prove my claim with disability,therefore, in disabilitys eyes, it never happened.I know that this is why my initial app was denied.I am currently doing a reconsideration and had to call and hire a dang lawyer to help me as i was getting nowhere doing this myself.The only thing i have going for me at this point was that I managed to find out the name of the neurophysiatrist who did the monitoring of my nerves during the surgery.I talked with a very wonderful and kind person at his office who offered to go down in their records room and find the report and send it out to me.I should be getting that in the mail today.I am hoping and praying that it has the documentation that i need.what is even more strange is that this report was supposed to also be in my medical file but was not and no one seemed to even acknowledge the existance of this dr!i am seeing a conspiracy here.

I am sorry for rambling but i wanted to point out that you just don't know what is related to what nerve or area unless you take the time to really research this and make connections yourself.

unforunetly, if your SNS is damaged, I seriously doubt that there is anything that can be done to repair it,god I wish that wasn't true.If you are trying to determine whether or not the SNS is affected in you, i would start looking at the sympathetic chain for info.I got alot of hits when I put in these two words.Good luck and keep me posted okay?Marcia





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