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    Old 03-17-2007, 08:47 AM   #16
    bdancer
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    Re: New to board! C5 C6 Cord Compression

    Hi erica


    I live upstate about an hour and I went to *** Dr Camissa head of spinal surgery.. great place to get surgery done voted #2 hospital in the nation by US news ..good luck

     
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    Old 03-17-2007, 01:24 PM   #17
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    Re: New to board! C5 C6 Cord Compression

    Quote:
    Originally Posted by erica1976 View Post
    hi avglenn, i asked my neurologist's PA about that and she said that it was an option I could look into....epidurals kinda freak me out though..would probably feel more comfortable having the surgery!
    Ya Im in the same boat. I need to pick from a 7 panel list of Dr.s for a consult for cervical c5/c6 epidural of Dr.s who I dont even know. I am just going to call each one and ask questions like success rate and frequency rate of cervical epidurals. Im not looking forward to it, but Im fed up with the pain. My thing is, I dont think any Dr. is going to guarranty a pain free long term fix with epidural. And it could make things worse.

     
    Old 03-18-2007, 07:18 AM   #18
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    Re: New to board! C5 C6 Cord Compression

    Just an FYI you need to remember about actual spinal cord compression or even mild affectation is that you are now beyond just dealing with the motor and sensory nerves at this point and are dealing with actual spinal tracts which carry all of the body system function info to the brain.this can become a huge problem and possibly a devistating one if that compression is left with no intervention for too long.just like with a compressed nerve ,the cord can also start to necrose or die off,or even granualize(myelomalacia) without the proper blood flow and other chemicals it needs to sustain itself.

    i had to have a glob of blood vessels removed from the inside of my cord up at the c 7 t 1 levels back in 03.this damaged three spinal tracts two spinal nerves and severly damaged my sympathetic nervous system.the amount of actual damage to certain body systems and wierd freaky stuff i now have going on inside all different parts of my body are honestly,at times,indescribable.

    the thing is,the longer you wait to have this relieved the much higher risks you have of having some permanent types of damage to your cord,trust me,you don't want to go there.from what you have described as far as symptoms,i really do think that you are at the point where you really DO need some sort of surgical intervention.you most definitely also have a much higher risk of possible paralyzation from even a minor accident but even more likely,damage to certain spinal tracts and nerve fibers that also run thru your cord.all it would take is enough force or kinetic energy that would force that end of whatever is already compressing your cord to push it ahead a bit further.that cord is small but it just carries sooo incredibly much info and important nerve signals to your brain that even losing a small amount of tract or nerve fibers inside of it can have some really big effects on certain areas of your body.quite frankly being an "incomplete" spinal cord injury patient can have many many more possible complications and nasty pain syndromes than someone who is an actual "complete' SCI patient.paralyzation is NOT the worst thing in the world,believe me.

    i am not trying to scare you here just trying to get you to see the very real things that can come along for the ride if you should wait too long to have this intervened upon.going in from the front of your neck and having this fixed would probably be the best way to go actually.if you do not have to cut thru all that really thick hard muscle in the upper back and c spine areas thats really a big bonus.this was a big long recovery for me when i had that spinal cord surgery.they had to do a tri level lami and go into my cord from the back side.the difference in the pain from when they went in from the front to do my ACDF and the very weak muscle there as opposed to the large amount of muscle in the back was huge pain wise.i actually had to have two anterior approach surgeries done,the original surgery and then a hardware placment when my c spine didn't fuse.its a much easier approach to heal from and the pain was much much less.

    i just really do think,based on your symptoms and the overall length of time this has been this way with your spinal cord,you really DO need to start to consider the surgery before something else can happen to make things much worse than they already are,but that choice is up to you.its time to weigh the pros and cons.there are many benefits from having this done as well as the usual risks involved.putting all of this on paper may help to really take a good look at what either option will or wont do for you and the risks of leaving things this way Vs moving onto the surgical options.at least they will not actually have to cut into your cord.removing a compression is risky but much much less than what i was forced to make a decision on.now that one really sucked.it was the lessor of two evils type thing where either way,i was going to suffer permanent damage.the thing is,every surgery no matter how minor or major all carry some level of risk,but when you compare that to not having a particular surgery,well sometimes you just have to dive in and get it done to save yourself from something even worse down the road,ya know?despite all the crap i now have to deal with because of my damage,i would probably make the same decision if i had it to do all over again,just because to leave that sucker in my cord would have definitely caused another bleed on top of the two i already had and left me in a wheel chair with other possible types of damage as well.i still think i did what i really needed to do at the time,and given the risks of leaving it in and the inherent risks with that,vs just taking it out.not fun but needed at the time.heck,this little SOB could have even bled on me while i was driving or doing some other hazerdous type of task,that kind of made me shiver a bit.

    i know this is a big old scarey decision,but i really do think given your symptoms,its probably time to just deal with this and be able to breathe a bit easier knowing that risk to you is gone.just weigh all options and get at least a few different opinions on any particular procedure that is presented to you.i sought out three seperate opinions before consenting to my surgery for the cavernoma removal.i needed to know i was making the best possible informed decision before consenting to anything surgical.

    just a little helpful suggestion for you here,but when i was in this process i kept thinking of really good questions to ask but would forget them when the time came with the NSs?so i started keeping a notebook with a pen on my kitchen counter and whenever i thought of a good question i immediately went to the notebook and wrote them down.if i waited,even a few minutes to do this,i would tend to forget what the dang question even was.so i learned to do this as soon as they popped into my head,even when i was lying down to go to sleep at night.this always seemed to be when i did my best thinking.but you have every right to ask as many questions of any NS who may be doing this surgery.i actually ended up with three very long pages of questions,and my wonderul NS actually answered them all for me,even making little bits of time for me between surgeries.he knew i was rather terrified at the thought of someone actually cutting into my cord and he was really empathetic.luckily i had the head of neurosurgery at the university of MN do my surgery,but now he went and retired on me so that really sucks.but i was very lucky to have his level of experience and overall knowledge.he practiced for some thirty odd years.experience is the key here tho,you need to have a good knowledgeable experienced NS doing your surgery.you can ask them how experienced they are in your particular surgery.you DO have that right to know before consenting to anything.

    i do wish you lots of luck with this and hope everything goes well for you whatever you decide.i just wouldn't keep this on hold for too long tho,K? take care and let me know how things are going for you.Marcia


    Oh,by the way,just what IS an 'LI' surgeon?i have never heard that one before.
    __________________
    3-22-01,herniated C-6-7
    11-20-01,placement of hardware for failed fusion
    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

    Last edited by feelbad; 03-18-2007 at 07:24 AM. Reason: big burning question???????????

     
    Old 03-20-2007, 05:31 PM   #19
    erica1976
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    Re: New to board! C5 C6 Cord Compression

    Quote:
    Originally Posted by bdancer View Post
    Hi erica


    I live upstate about an hour and I went to *** Dr Camissa head of spinal surgery.. great place to get surgery done voted #2 hospital in the nation by US news ..good luck
    HI Bdancer, what did you think of Dr. Camissa? I had an appt with him but never made it to the appt...am thinking about rescheduling b/c I hear he is a great surgeon....what was your impression of him?

     
    Old 03-20-2007, 05:52 PM   #20
    erica1976
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    Re: New to board! C5 C6 Cord Compression

    Quote:
    Originally Posted by feelbad View Post
    Just an FYI you need to remember about actual spinal cord compression or even mild affectation is that you are now beyond just dealing with the motor and sensory nerves at this point and are dealing with actual spinal tracts which carry all of the body system function info to the brain.this can become a huge problem and possibly a devistating one if that compression is left with no intervention for too long.just like with a compressed nerve ,the cord can also start to necrose or die off,or even granualize(myelomalacia) without the proper blood flow and other chemicals it needs to sustain itself.

    i had to have a glob of blood vessels removed from the inside of my cord up at the c 7 t 1 levels back in 03.this damaged three spinal tracts two spinal nerves and severly damaged my sympathetic nervous system.the amount of actual damage to certain body systems and weird freaky stuff i now have going on inside all different parts of my body are honestly,at times,indescribable.

    the thing is,the longer you wait to have this relieved the much higher risks you have of having some permanent types of damage to your cord,trust me,you don't want to go there.from what you have described as far as symptoms,i really do think that you are at the point where you really DO need some sort of surgical intervention.you most definitely also have a much higher risk of possible paralyzation from even a minor accident but even more likely,damage to certain spinal tracts and nerve fibers that also run thru your cord.all it would take is enough force or kinetic energy that would force that end of whatever is already compressing your cord to push it ahead a bit further.that cord is small but it just carries sooo incredibly much info and important nerve signals to your brain that even losing a small amount of tract or nerve fibers inside of it can have some really big effects on certain areas of your body.quite frankly being an "incomplete" spinal cord injury patient can have many many more possible complications and nasty pain syndromes than someone who is an actual "complete' SCI patient.paralyzation is NOT the worst thing in the world,believe me.

    i am not trying to scare you here just trying to get you to see the very real things that can come along for the ride if you should wait too long to have this intervened upon.going in from the front of your neck and having this fixed would probably be the best way to go actually.if you do not have to cut thru all that really thick hard muscle in the upper back and c spine areas thats really a big bonus.this was a big long recovery for me when i had that spinal cord surgery.they had to do a tri level lami and go into my cord from the back side.the difference in the pain from when they went in from the front to do my ACDF and the very weak muscle there as opposed to the large amount of muscle in the back was huge pain wise.i actually had to have two anterior approach surgeries done,the original surgery and then a hardware placment when my c spine didn't fuse.its a much easier approach to heal from and the pain was much much less.

    i just really do think,based on your symptoms and the overall length of time this has been this way with your spinal cord,you really DO need to start to consider the surgery before something else can happen to make things much worse than they already are,but that choice is up to you.its time to weigh the pros and cons.there are many benefits from having this done as well as the usual risks involved.putting all of this on paper may help to really take a good look at what either option will or wont do for you and the risks of leaving things this way Vs moving onto the surgical options.at least they will not actually have to cut into your cord.removing a compression is risky but much much less than what i was forced to make a decision on.now that one really sucked.it was the lessor of two evils type thing where either way,i was going to suffer permanent damage.the thing is,every surgery no matter how minor or major all carry some level of risk,but when you compare that to not having a particular surgery,well sometimes you just have to dive in and get it done to save yourself from something even worse down the road,ya know?despite all the crap i now have to deal with because of my damage,i would probably make the same decision if i had it to do all over again,just because to leave that sucker in my cord would have definitely caused another bleed on top of the two i already had and left me in a wheel chair with other possible types of damage as well.i still think i did what i really needed to do at the time,and given the risks of leaving it in and the inherent risks with that,vs just taking it out.not fun but needed at the time.heck,this little SOB could have even bled on me while i was driving or doing some other hazerdous type of task,that kind of made me shiver a bit.

    i know this is a big old scarey decision,but i really do think given your symptoms,its probably time to just deal with this and be able to breathe a bit easier knowing that risk to you is gone.just weigh all options and get at least a few different opinions on any particular procedure that is presented to you.i sought out three seperate opinions before consenting to my surgery for the cavernoma removal.i needed to know i was making the best possible informed decision before consenting to anything surgical.

    just a little helpful suggestion for you here,but when i was in this process i kept thinking of really good questions to ask but would forget them when the time came with the NSs?so i started keeping a notebook with a pen on my kitchen counter and whenever i thought of a good question i immediately went to the notebook and wrote them down.if i waited,even a few minutes to do this,i would tend to forget what the dang question even was.so i learned to do this as soon as they popped into my head,even when i was lying down to go to sleep at night.this always seemed to be when i did my best thinking.but you have every right to ask as many questions of any NS who may be doing this surgery.i actually ended up with three very long pages of questions,and my wonderul NS actually answered them all for me,even making little bits of time for me between surgeries.he knew i was rather terrified at the thought of someone actually cutting into my cord and he was really empathetic.luckily i had the head of neurosurgery at the university of MN do my surgery,but now he went and retired on me so that really sucks.but i was very lucky to have his level of experience and overall knowledge.he practiced for some thirty odd years.experience is the key here tho,you need to have a good knowledgeable experienced NS doing your surgery.you can ask them how experienced they are in your particular surgery.you DO have that right to know before consenting to anything.

    i do wish you lots of luck with this and hope everything goes well for you whatever you decide.i just wouldn't keep this on hold for too long tho,K? take care and let me know how things are going for you.Marcia


    Oh,by the way,just what IS an 'LI' surgeon?i have never heard that one before.
    Marcia, thank you so much for your thoughtful and helpful reply...really sobering i have to admit but i know i have to hear it...I was all ready to do the surgery and they my neurologist was saying i should not rush into it...then i got confused about doing the surgery. Sometimes i feel like there is a lump in my throat when i swallow (since the injury) and i occasionally feel like my breathing is labored. The surgeons say it is unrelated but the symptoms began directly after the injury so i disagree...since ACDF can cause swallowing difficulty, i worry about that....BTW, LI stands for Long Island, NY...

    I am so sorry to hear everything you have been through!!! How did your injury begin? Was there trauma involved?

     
    Old 03-22-2007, 03:14 PM   #21
    djl
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    Re: New to board! C5 C6 Cord Compression

    Hi all

    My advice, any compression should be taken seriuously.

    I just has Nuerosurgery on 11-29-07 C-5 to C-7 Fussion. I had loss of fluid, spinal compression, loss of reflexes severe pain numbness in left hand. ect.

    I had my disks replaced with plastic ones filled with my bone, fussion and a titanium plate with screws. My pain, and numbness is gone in my arm. I could do things that I couldnt before.

    I am still weak, but just got the ok last week for theropy so hopefuly that will help.

    Unfortunately, this past monday I fell on black ice right on my but. It automaticaly cased a headache, and severe back spasms and my neck started to feel worse.

    I immediately went to my GP since my surgen is 1 hour away and he sent me for full x-rays of my spine and put me on anti-inflamitories and Valume.
    The results were sent to my surgeon and no breaks or fractures..THANK GOD
    They did say that my tissue and muscles around my neck area were swollen, I said that is probably still from surgery. Unfortunately not. It was caused by the fall. I guess i aggrivated it all so I am on restriction again.

    My surgeon I feel is great. i was very happy with him.

    His name is Dr. Roger Hartl and he is in Manhattan. He is out of New York Prebitirian Weil Cornell. Excellent hospital.

    I live in Rockland County New York and the Hospital is about 45 min to 1 hour away. It was deffinately worth the trip. I still see him for follow ups and x-rays.

    Any questions please ask
    GOOD LUCK WITH ALL

     
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