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Old 11-21-2009, 05:41 PM   #1
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Cool Incomplete paraplegia

I am wondering if there is anyone out there who has this same diagnosis. I have movement of my legs but cannot walk unless assisted. The cause of this problem is thoracic and lumbar myelopathy. I have had 10 spinal procedures, I still have spinal stenosis at L3-4 and an anteerolisthesis of 11 cm. on the right at L3-4. Basically I am starting to get disheartened. I go to PT 2 times a week and do my own at home the rest of the time but I feel as though I am going nowhere. I'm probably just feeling a bit depressed as I have always been independent. I am 62 yr. young and have never had to ask for help with regards to my own personal dealings. Oh well, it could always be worse but I feel better even just jotting this down. Thanks for listening The invertebrate..

 
Old 11-22-2009, 09:58 AM   #2
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Re: Incomplete paraplegia

ya know, the actual myelopathy is caused by spinal cord injury and not the other way around? what you are having the problems from is the actual cord injury which leaves behind/creates myelopathy as kind of a secondary result OF that cord just being impacted at all. when/how exactly did your cord become injured? was there something that was just pushing up against it or what? surgery, depending upon just where the problems are located themselves when the surgery is done can itself at times cause the spinal cord injury. its just the ONLY way a person can actually end up with myelopathy IS from some level of real damage to the spinal cord itself, no spinal structural surgery(like a fusion done?) should have actually caused this unless they either had to go into your cord for some reason, or they possibly inadvertently touched/damaged it or hit it pretty hard during one of your many surgerys, ya know what i mean?

why have you had to have such a huge number of spinal surgerys done? some type of condition or just alot of different types of spinal issues going on? the one thing i learned about how well any rehab program really works when something has been 'knocked out' of commission by cord injury is the sooner you start a good acute rehab program the better the outcome? i lost my left hand and left leg completely after my cord was cut into and they had to remove what was basically a huge glob of blood vessels that had been there my whole life smack in the middle left of my cord. i just did not know this glob even existeed til i had to have my very first ever MRI done on my c spine to find just what disc i actually herniated. that glob was found then. did not have a clue as to what this even was. its called a cavernous hemangioma.

i completely lost that left leg but was also immediately,from the surgical hosp sent to a really great rehab hospital,i did not even get to go home first,just transported directly from hosp to hosp by ambulance to start my very intensive acute rehab there asap. this was only about two weeks post op. i was actually able to rehab that leg enough over time that i actually have pretty much full usage again and no walking aids either. i really was kind of shocked considering the very first time i actually was allowed to get up out of bed the very first time, that leg had nothing there at all to even begin to hold me up? that leg just crumbled from underneath me totally. i would have hit the dang floor if two nurses were not there to hold me up.

so depending upon what is actually even able to be rehabbed, how soon therepy is started and the right therepies for your level of injury, really determines outcome. but i too have myelopathy and whats called clonus in that leg and always will. are your reflexes now all hyper in the legs? do you have ANY real symptoms of sympathetic nervous system damage(or autonomic dysfunction?)? this just can occur with just about any level of spinal surgery only because that sympathetic chain actually runs OUTSIDE(very vulnerable to just getting hit) along both sides of that spinal comumn(it pops out at around c 8 then "chains" down from there), not actually just 'IN" it?

when it comes to any rehab at all? as long as you are making even tiny increments of getting more ROM or more stability and usage from the legs, it IS actually doing something for you. if you really are going nowhere with this, i would at least consult a good physiatrist(a very very knowledgable type of physcial medicine doc?) about how your rehab is set and is it the best possible type for YOUR individual needs right now. all my therepy was set and monitored by an amazing physiatrist. but i was also inpatient for a few weeks too.

if you can actually find out or if you actually know just exactly what surgery casued the spinal cord injury, and espescially just how long ago, it would kind of give a better indication of how much really is possible to regain again. its just getting into that rehab after sp cord injury is really crucial. have they ever actually done an EMG/NCV on your legs to really find out the true level of nerve flow in all the important nerves going down there and TO the actual muscles involved? if not, it really would help to know this since that nerve flow to the muscles is going to kind of tell just what is or is not even possible TO regain? my physiatrist is the one who has done all my EMGs over the years since 2003 when my cord was damaged.

if you could tell me about the extent of the surgeries that mayhave been very close to your cord it would help. one other thing? has any of your follow up MRIs EVER showed as a finding, something referred to as "myelomalacia" going on in the cord level? if so, that previous to that MRI surgery you had done is more than likely the very one that actually caused the cord injury to you. its just a normal process that kicks in when the cord has actually been damaged in some way very impactfully. it does not stay for too long as once its done granualizing tissue, it actually goes away. so it has to be caught pretty early post op while it is still doing its job kind of thing?

if you do not actually have ALL of your MRIs and all the hospital records from each surgery in your possession, i would very highly recommend that you just obtain all of it for YOUR own personal medical records now. there are certain things that are pretty revealing that you just find amongst all that stuff that can really show when certain things actually occured with you too. i have all my own copies of all and any MRIs(17 have been done since 2001) and of course all the hosp records including the very important "op notes" there too? they are kind of a transcript of every surgery that every surgeon just has to by law, do post op after every single surgery they perfom. these can also be very helpful too.

just some stuff i thought you should be aware of. Marcia
__________________
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.

 
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Old 11-23-2009, 12:06 PM   #3
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Re: Incomplete paraplegia

Hi there, thank you for the very informative response to my post. I did indeed have several spinal problems that facilitated my numerous back surgeries. I think the cauase of my problems now were caused by a spinal cord stimulator which was suppose to alleviate the excruciating right leg pain I had . The temporary stimulator worked very well. I went in to have the permanent one placed and when I woke up from that procedure I went to get up and my right leg crumpled on me. This did not happen before this procedure. The surgeon knew that I ahad spinnal stenosis and stated that it was rare to have stenosis in the thoracic spine. He didn't understand what had happened and said it wasn't because of this procedure. I finally demanded that he do something to see what was wrong and finally ordered a CT myelogram with contrast and right there at the level of T10-11 was the area where he placed the paddles and the area of severe stenosis. My spinal cord was being compresed. I demanded that it be taken out. He offered no therapy at that time and I finally got another physician to order it but there was already damage done. I started PT as an out patient

 
Old 11-23-2009, 12:16 PM   #4
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Re: Incomplete paraplegia

[QUOTE=invertebrate;4130142]Hi there, thank you for the very informative response to my post. I did indeed have several spinal problems that facilitated my numerous back surgeries. I think the cauase of my problems now were caused by a spinal cord stimulator which was suppose to alleviate the excruciating right leg pain I had . The temporary stimulator worked very well. I went in to have the permanent one placed and when I woke up from that procedure I went to get up and my right leg crumpled on me. This did not happen before this procedure. The surgeon knew that I ahad spinnal stenosis and stated that it was rare to have stenosis in the thoracic spine. He didn't understand what had happened and said it wasn't because of this procedure. I finally demanded that he do something to see what was wrong and finally ordered a CT myelogram with contrast and right there at the level of T10-11 was the area where he placed the paddles and the area of severe stenosis. My spinal cord was being compresed. I demanded that it be taken out. He offered no therapy at that time and I finally got another physician to order it but there was already damage done. I started PT as an out patient
I had a thoracic foraminectomy done on 8-18-09 and have no reflexes from the knees down and nno sensation on the inside of my right leg from the pubic bone down to my foot and diminished sensation on the outside of my right leg. On the left there is no sensation on the inside of my l leg and diminiished senation on theoutisde . I, like yourself, started PT immendiately after surgery as an in patient for a 6 week course. I am now at home and going to out patient PT. I am making progress however in small incriments but at least they are improvements. I realize that I can't go as fast as I want to but however I will make the best of what I can use.

I do have all the copies of MRI's and OP reports as well as a filing cabinet full of my medical records. Just a little light reading!

Thanks again for your post. I appreciated it imensely. Jane,the invertebrate!

 
Old 11-24-2009, 09:11 AM   #5
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Re: Incomplete paraplegia

just let me ask this one very important question. was your ins co one called kaiser by chance? just wondering since i know of another woman who had a similar type of experience during HER scs implantation, but they actually ended up inflicting a really hidious condition called RSD on her(this just happened within the last few months). it was a really really negligent and sick thing to actually inflict upon someone for life. i also have RSD too and it is hellish at times.

have you ever actually considered legal action against what had to be a really incredibly stupid doc for actually causing compression of your cord and lasting damage to you?

i am glad you are STILL making increments in the right direction hon. like i mentioned before, as long as you actually ARE seeing even small changes or better stability,that IS progress. it usually takes the spinal cord about one full year to actually heal and recover from ANY type of actual injury or trauma. when did the scs nightmare actually occur? just how long ago?

i too did out patient therepy after my discharge from the rehab hospital for about another six weeks. my ins co decided for me that i was at the best i was going to get. they did not seem to care that it sooo helped with severe muscle damage that was just there from where they had to go into my cord from the back and also do a tri level lami? that muscle hell i have been dealing with almost constantly ever since that surgery was done in 03. they had to make a rather large incision up from just below the base of my skull down into the between the blades area? so its pretty extensive.

you still may or may not actually regain better nerve flow over time to that leg. i lost alot in my left hand, like eight fine motor muscles along with gaining a wonderful horrid pain syndrome too. but when i had my two month post op EMG, it showed areas that were like dead and i also had solid numbness in those places too, but over time and just espescially typeing everyday since, my EMG and my feeling has actually gotten better. that really freaked me out let me tell ya. so you just keep doing the required therepys and see how it will go with some time and also the natural recovery of the cord trauma too.

have they ever actually even done that pretty crucial EMG/NCV on your legs just to really see how much flow you really have right now? doing one at the beginning or even now so you have that 'baseline' set of EMG results really does show when you have any follow ups if something that actually even had no flow or very little then has improved. if you have ANY good changes between the two being done, it means you still have room to progress. if they have not ever bothered to do this for you during this time things just hit the fan, they really just need that baseline EMG to compare to later down the road. the EMG/NCV is really the ONLY type of test that shows just the overall nerve flow velocity and how the flow just is to all of the muscles too. thats all this particular type of test shows, nerve flow velocity. just something you really do need. i really am so sorry about how this sick crap even occured in you. that really does sound like at the very least, negligence on the docs part since they are supposed to use flouro and should have also done an MRI so they would have ALREADY known just how that canal was. it would have or should have shown itself upon MRI, the size? Marcia
__________________
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.

 
Old 12-02-2009, 09:19 AM   #6
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Re: Incomplete paraplegia

I did not have the SCS implanted at Kaiser. This was done at OHSU, Portland. After my disaster apparently the docs have had others who had the same problem and they knew right away what was wrong.Apparently Now they are are radiographed before this procedure.

I don't know what RSD is. Sure hope the person who had the implant screwup is doing better. I did try to find an attorney who would reppresent me because the doc certainly hurt me. Noone would take the case because this doc was the "expert witness" for all of the firms in the tri county area. Oh well.

I have had what seems like an inordinate number of EMG's starting back in 1984 and the last one was done prior to my last sugery in August. I had my monthly eval in physical therapy yesterday and I have gotten stronger and have more stability than before-not a whole lot but at least some and that makes me even more determined to get back even more stability and mobility. My therapist told me that after she read my last MRI and had not met me that she thought I wo uld neve rbe able to walk, therefore the "invertebrate". Thanks for the reply.

 
Old 12-02-2009, 10:02 AM   #7
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Re: Incomplete paraplegia

no problem 'in'. like i mentioned before hon, as long as you are actually making ANY and i mean any real progress at all what so ever, you are getting better and are also moving forward. it unfortunetly just takes time, lots of time. but what you actually get out of PT when you are making that progress is what you will get out of it, ya know what i mean? every single tiny increment you are gaining IS making a huge difference tho you may not always feel it? just stay the course.

i really am so sorry this was even inflicted on you and the situation just is what it is. someone should be paying for this hell ya know? and it should definitely NOT be you. please keep me posted,K? i am thrilled that you are making progress, that really DOES mean alot in your type of situation, trust me. marcia
__________________
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.

 
Old 12-03-2009, 11:06 PM   #8
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Maybe you can help answer my questions....

Hello Feelgood, I have seen many of your post, and this one sure did sound like my problems. I will try to make this short and to the point. These are the symptoms I have right now. Left leg heavy, numb from the knee down. Sometimes my big toe and the next toe curl up or I should say under. That last for a few minutes then they go back to normal. I can't feel my toes most of the time, but when I lay down on the bed, and stretch real hard, then I can feel something. I am soooo stiff getting up in the morning, and if I bend from the waist I stiffen worse. I have had a lumbar laminectomy in 2003. No hardware. Still the problem continued. Then in 2007 I had my first cervical operation. They went in from the front. I have a cage, plate and screws. They removed one whole vertebra all together. Then in 2009 April I had the second neck surgery, they went in from the back. There they found a calcified ligament pressing on my spinal cord. When the doctor removed it, the spinal cord "puffed back up" . I was told this was a very good sign. Doc feels it will take at least 2 years for me to get better then I am now. But, because of the spinal damage (fell out of my tub in 1990) and twisted 3 ways, I might not get back to 100%.. Last visit to the doc was in May, had my neck x ray-ed all was good there. But this walking is really getting me down. I just can't do anything like I did before. It makes me sit and cry at times, untill I say enough, it could be worse. I use a cane, and a walker, and I am only 54 years old.. I keep walking on my own, as much as I can do, but I have to lay down alot to rest my back and legs. My legs are just not working, and I'm getting really scared...Well thanks for listening. Any info would be helpful. Thank you again. Janatee

 
Old 12-20-2009, 10:54 AM   #9
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Re: Incomplete paraplegia

Hello Janatee, I wasn't sure if you were looking for some info from me with regards to your legs or about the cervical spine. In regards to your leg symptoms I would suggest you see your PCP and perhaps he can refer you to a neurologist. I can empathize with you. I have had numerous surgeries on my lumbar spine and one in the thoracic spine and have alot of neuropathy which is the cause of my incomplete paraplegia and my leg problems.

I empathize and understand how you feel. Hopefully your PCP or NS can order an MRI or do some nerve conduction studies to find the answers to your leg symptoms. Sometimes it if very hard to be upbeat when you feel like your life has run off of the track but just keep on keepin' on. Hopefully you can get some neurological testing done and find out the source of you symptoms.
Hang in there. Best regards and have a Merry Christmas and a Happy New Year.

Last edited by invertebrate; 12-20-2009 at 10:57 AM. Reason: additional info

 
Old 12-26-2009, 10:43 AM   #10
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Re: Incomplete paraplegia

sooo, just trying to get a better feel for what occured and what the continued lower torso symptoms actually are? when you actually had that lumbar surgery NOTHING actually changed as far as what you are describing now with the toes not being felt and them curling on you too??? have they EVER actually done just a basic EMG/NCV study ON that particular leg just to really check out true nerve flow to all the right places down TO those toes? this type of test is only really good for one thing, and it does show this very well compared to ANY other test you could possibly have, and that IS just actual nerve flow velocity. the nerves innnervate the sensory AND also the motor functions within the legs down to the toes as well. so any real impairment WOULD show just how well things are being innervated both in a sensory and more importantly for Dxing what is affecting the foot on down from that knee thru the toes,the innervation of the muscles too. it wouldn't hurt to also have a new lumbar MRI too just to give a much better overall picture of everything when combined along with the EMG results.

just what was stated in your pre op lumbar MRI as the more significant findings back then? this would really matter now,espescially if nothing actually changed there for you post op?

the bigger thing to keep in mind here espescially since there was simply NO real change after your lumbar surgery, is that whenever anything is just happening below the level of the base of skull/neck, just about ANYTHING that has been impacting your actual cord, espescially if it has been over a longer period of time, that c spine issue can always also be responsible for certain problems that are wayyy down to your toes too. it all depends upon how much real true impact was at that cord level in your c spine area. but i would definitely be asking your doc to refer you for that EMG, but i would also have them actually do this not just in that leg area, but actually starting AT the c spine level where you just did have compromise. having someones cord actually 'puff up' after compression is removed, well, there just CAN be other reasons for that depending upon just how that actually was and how knowledgable your surgeon who did this actually was too? it all comes down to the overall knowledge and experience of ANY real surgeon and how they would 'percieve' things down to reactions within the cord during any given surgery?

was there ANY actual what is called 'intra operative monitoring" occuring during that particular compression relieving surgery done at the c spine level? you would have had little electrode patches placed from the upper down thru the foot area pre op if you did. if you have not yet already done so, please do this one thing for yourself? obtain any and all medical records from that hosp where that c spine and the lumbar as long as you are doing this anyways, with special emphasis on what are called the 'op notes" that are just kind of the overall trtanscription of what any suirgeon has to make following ANY actual surgery they do on any patient? and also ask for any intra operative monitoring op notes too since the neurophysiatrist who does this HAS TO also make HIS own op notes too? my actual spinal cord damage, which i already knew i was going to have pre op, never showed up at all in only my actual neurosurgeons op notes. everything that had to do with any changes on the monitor which indictaed my damage was being done in my cord was ALL actually in those monitoring op notes ONLY.

just ask for everything in your actual central file at the hosp where you had this done, but DO also specify all op notes doen by anyone who made them. i gotta fly right now since i am due somewhere but wanted to at least answer this now since i just have not had the time to really get into this for you hon. i will be back, Marcia
__________________
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.

 
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