2MnyHats
03-31-2003, 05:59 PM
I'm wondering if anyone can offer me any personal experiences with persistent cervical myelopathy following an Anterior Cervical discectomy/fusion. I made a quick climb to walking with a walker a week after surgery but now, almost 3 months out, I still require my wheelchair at least half the time.
My symptoms are weakness in the lower extremeties, some spasticity, some muscle rigidness in my ankles which makes walking difficult. I have some symptoms in my upper extremities as well (finger drift, clumsiness, shaking) but these I can handle. I'm just wondering if this is the best it gets!
My symptoms are weakness in the lower extremeties, some spasticity, some muscle rigidness in my ankles which makes walking difficult. I have some symptoms in my upper extremities as well (finger drift, clumsiness, shaking) but these I can handle. I'm just wondering if this is the best it gets!
Sponsor
joprud
03-31-2003, 06:31 PM
Hi 2MnyHats,
I'm so sorry for what you're going through. I'm afraid I can't offer any help but please be assured the experts will be along soon. They are truly a wonderful group of people and are always very helpful and knowledgeable. (not to mention very funny. http://www.healthboards.com/ubb/jester.gif )
I did want to Welcome you aboard and wish you all the best in finding some relief from your symptoms.
Take Care, :wave:
Joanne
------------------
Sept‘63,fall on back on stairs,compression fractures of T6 and T8
1993 X-ray Diagnosed DDD
Nov,2002 MRI C4-C5 posterior osteophytic bar effacing ventral thecal sac, stenosis of neural foramina.C5-C6 posterior disc protrusion effacing VTS. Stenosis of neural foramina.C6-C7 posterior disc herniation effacing VTS.stenosis of neural foramina.C7-T1perineural cysts in both neural foramina.left convex scoliosis mid thoracic spine.wedging of T7. wedging of T5.degen.end plate changes at T8-T9. L4-L5 diffuse disc bulge effacing VTS.hypertrophy of facet joints,central spinal stenosis.L5-S1 posterior disc protrusion with associated tear of annulus fibrosis. hypertrophy of facet joints.S1-S2 Perineural cysts involving S1-S2 nerve roots.
So far have tried: meds,physio,accupuncture all to no avail.
I'm so sorry for what you're going through. I'm afraid I can't offer any help but please be assured the experts will be along soon. They are truly a wonderful group of people and are always very helpful and knowledgeable. (not to mention very funny. http://www.healthboards.com/ubb/jester.gif )
I did want to Welcome you aboard and wish you all the best in finding some relief from your symptoms.
Take Care, :wave:
Joanne
------------------
Sept‘63,fall on back on stairs,compression fractures of T6 and T8
1993 X-ray Diagnosed DDD
Nov,2002 MRI C4-C5 posterior osteophytic bar effacing ventral thecal sac, stenosis of neural foramina.C5-C6 posterior disc protrusion effacing VTS. Stenosis of neural foramina.C6-C7 posterior disc herniation effacing VTS.stenosis of neural foramina.C7-T1perineural cysts in both neural foramina.left convex scoliosis mid thoracic spine.wedging of T7. wedging of T5.degen.end plate changes at T8-T9. L4-L5 diffuse disc bulge effacing VTS.hypertrophy of facet joints,central spinal stenosis.L5-S1 posterior disc protrusion with associated tear of annulus fibrosis. hypertrophy of facet joints.S1-S2 Perineural cysts involving S1-S2 nerve roots.
So far have tried: meds,physio,accupuncture all to no avail.
Debbie2
04-01-2003, 11:22 AM
Hi too many hats... I have a old (she's not old) from the board who no longer can post. But I do remember her saying so much about this, because it was exactly what she had.
I know she said myelopathy takes 6 months to a year to recover from. Not everyone recovers... Physical therapy will help, and you have to try HARD at it. Also, there are tricks to re-learning balance that will help, and PT will help that as well. Please, do NOT to give up hope. She has so many complication and is so strong willed, I know it will produce positive results for her.
Know that it is a long hard recovery... much worse than the regular acdf. Myelopathy is a serious thing. Also..... after 5 months, she still has problems that are directly related to the amount of activity she does. Too much, and you will definitely suffer for it, so EASY does it!! Heat helps... long hot baths, heating pads and massage. That was what she always said... and she knew so much :)
Debbie :D
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
I know she said myelopathy takes 6 months to a year to recover from. Not everyone recovers... Physical therapy will help, and you have to try HARD at it. Also, there are tricks to re-learning balance that will help, and PT will help that as well. Please, do NOT to give up hope. She has so many complication and is so strong willed, I know it will produce positive results for her.
Know that it is a long hard recovery... much worse than the regular acdf. Myelopathy is a serious thing. Also..... after 5 months, she still has problems that are directly related to the amount of activity she does. Too much, and you will definitely suffer for it, so EASY does it!! Heat helps... long hot baths, heating pads and massage. That was what she always said... and she knew so much :)
Debbie :D
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
winged phantom
04-01-2003, 11:30 AM
2MnyHats,
Just wanted to stop in and say "Hi" :wave:. Debbie seems to have a pretty good answer- much better than any I can offer. I hope you have good therapists who can help you with these problems. Have a good day.
wr
Just wanted to stop in and say "Hi" :wave:. Debbie seems to have a pretty good answer- much better than any I can offer. I hope you have good therapists who can help you with these problems. Have a good day.
wr
2MnyHats
04-01-2003, 11:43 AM
Thanks Debbie and to all for the encouragement. I have resigned myself to this being a long process. I doing an exercise routine 2X a day but I like your friend, find that my too much activity results in setbacks. I like long hot baths so needless to say our water/gas bill is also screaming! Debbie- do you know if your friend is still using a wheelchair or is she able to walk ok?
Thanks again :)
Thanks again :)
melanie dawn
04-01-2003, 12:45 PM
HI 2ManyHats,
Great name, I love it. Well , about the myelopathy. I too have it. I have not had my surgery yet. There are so many variables. One of the most important is , how long were you symptomatic before your surgery?
and how advanced were your symptoms? I know in my case I have been symptomatic for over 2 years. The surgeon would not even give me an estimate of return of function because of the length of time. I read somewhere that surgery in the first 6 mo. can bring on up to 80-90% return, but after two years no-one knows how much return, for me he said the goal was to stop the progression. Unfortunately Debbie was right, the recovery can be long and difficult. Especially if you had high grade myelopathy with advanced symptoms. What were your symptoms pre surgery? And what surgery did you have?
Debbie already told you many of the things that help, be strong and patient, much can be done to rebuild endurance and strength, but it takes time and commitment without overdoing it.
I am awaiting my surgery, and have many of the issues you are dealing with. The stiff ankles really do make it tough to walk. It's like the tendon in the back of the ankle is spactic anad tight , has no flexability left. Keep your chin up, our bodies are complicated and individual, we all recover and react a little differently.
Pop in and keep us posted, don't forget to vent, whine, crack jokes and generally share with us, you have found a great group of supportive and wonderful people. Welcome!!!
Take care of yourself, Mel
Great name, I love it. Well , about the myelopathy. I too have it. I have not had my surgery yet. There are so many variables. One of the most important is , how long were you symptomatic before your surgery?
and how advanced were your symptoms? I know in my case I have been symptomatic for over 2 years. The surgeon would not even give me an estimate of return of function because of the length of time. I read somewhere that surgery in the first 6 mo. can bring on up to 80-90% return, but after two years no-one knows how much return, for me he said the goal was to stop the progression. Unfortunately Debbie was right, the recovery can be long and difficult. Especially if you had high grade myelopathy with advanced symptoms. What were your symptoms pre surgery? And what surgery did you have?
Debbie already told you many of the things that help, be strong and patient, much can be done to rebuild endurance and strength, but it takes time and commitment without overdoing it.
I am awaiting my surgery, and have many of the issues you are dealing with. The stiff ankles really do make it tough to walk. It's like the tendon in the back of the ankle is spactic anad tight , has no flexability left. Keep your chin up, our bodies are complicated and individual, we all recover and react a little differently.
Pop in and keep us posted, don't forget to vent, whine, crack jokes and generally share with us, you have found a great group of supportive and wonderful people. Welcome!!!
Take care of yourself, Mel
2MnyHats
04-01-2003, 01:42 PM
Thanks Mel for the info and encouragement! My symptoms began about 2 years ago with very mild pain in the back right below my shoulder blade and intermittent spells of weakness in my legs. I guess looking back I also noticed some decrease in my fine motor skills and also balance while standing. My primary physician (he's very good) sent me to a neurologist who after doing a 1 minute exam (basically none) he determined this was stress and offered to send me to counseling. I have never had a stress problem before. My primary doctor and I both knew this was a cop out. I continued with this pattern of intermittent weakness until late December of this year when the pain under my shoulder blade became knifelike. I went to the ER...guess what...no radiologic studies were done. The back pain relented by itself within 2 weeks only to be followed by profound weakness. I could only walk if my husband "dragged" me. This was followed by severe spasticity and clonus. I went to the ER again and the neurologist they consulted took notice and ordered the MRI. My surgury was January 10, 2003. It was and Anterior Cervical Discectomy and Fusion of C5/6. I have spastic toes that seem to want to curl under and a spastic rt quad but only the outside muscle. My rehab doctor says the stiff ankles that "lock" up are atypical for spasticity. But...they weren't there before all this happened! I tend to be atypical anyway!
What is causing your myelopathy? What kind of surgery are you awaiting. My surgery was actually a piece of cake...it's the aftermath that's a bother!
I'm very sorry that you are going through something so similar but I must say it is nice to chat with someone who understands. :)
Feel free to email anytime.
What is causing your myelopathy? What kind of surgery are you awaiting. My surgery was actually a piece of cake...it's the aftermath that's a bother!
I'm very sorry that you are going through something so similar but I must say it is nice to chat with someone who understands. :)
Feel free to email anytime.
Debbie2
04-01-2003, 02:54 PM
Hey 2mnyhats,
She now only uses a cane for long distances and on uneven ground... to keep her balance . After a lot of activity, she use it for support too! It does however, really tear up her arm and shoulders! She should use the walker, but is too stubborn. She is one of the strongest willed people I know, very determined. On occassion she will use a wheelchair but that is RARE (again her being stubborn) at like a shopping mall or perhaps when she needs to go to the airport, and stuff like that.
She was just recently reassured by one of her Drs. that it is a very LONG process and he easily expected her to take the 5 months to get to where she is. He said her progress was fantastic!
She wants more progress that is for sure, but she is really where she should be... so are you too most likely, so just be reassured of that :)
Glad to help, but it's her, all her that is the angel of a friend in my life. Not to mention, an inspiration.
Debbie
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
She now only uses a cane for long distances and on uneven ground... to keep her balance . After a lot of activity, she use it for support too! It does however, really tear up her arm and shoulders! She should use the walker, but is too stubborn. She is one of the strongest willed people I know, very determined. On occassion she will use a wheelchair but that is RARE (again her being stubborn) at like a shopping mall or perhaps when she needs to go to the airport, and stuff like that.
She was just recently reassured by one of her Drs. that it is a very LONG process and he easily expected her to take the 5 months to get to where she is. He said her progress was fantastic!
She wants more progress that is for sure, but she is really where she should be... so are you too most likely, so just be reassured of that :)
Glad to help, but it's her, all her that is the angel of a friend in my life. Not to mention, an inspiration.
Debbie
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
2MnyHats
04-01-2003, 03:06 PM
Thanks Debbie. It sounds like your friend really is making progress! Please wish her my best and let her know that she is not alone! :)
melanie dawn
04-01-2003, 04:39 PM
HI 2mnyhats,
I am awaiting a 3 level ACDF from C4-7 with plating etc. At first they were going to do 5 level psterior and remove the bone and implant rods and a cage etc. I am having the lesser done now, but with the knowledge that at some point I will need more surgery.Mine all started with a car accident, herniated the discs, which are now pressing on spinal cord. I am glad you found this board, everyone is so supportive, it is agreat place to vent and get and information.
Mel
I am awaiting a 3 level ACDF from C4-7 with plating etc. At first they were going to do 5 level psterior and remove the bone and implant rods and a cage etc. I am having the lesser done now, but with the knowledge that at some point I will need more surgery.Mine all started with a car accident, herniated the discs, which are now pressing on spinal cord. I am glad you found this board, everyone is so supportive, it is agreat place to vent and get and information.
Mel
2MnyHats
04-01-2003, 05:29 PM
Hi Mel-
Wow it sounds like your ordeal is quite complicated. I'm glad they have you scheduled for surgery though, since we both know it won't go away by itself! :(
The anterior approach scared me when they first mentioned it but afterward I had no incisional pain and very little discomfort (some slight neck/shoulder pain and some trouble swallowing). These were both temporary and lasted only a week or so.
My rehab doctor said that activity should help spasticity but I find that the more I do, the more my muscles spasm. He says I have an atypical movement disorder of unknown etiology. Duh...I didn't have this before the disk rupture!!! Needless to say I'm relying mostly on my primary doctor and the PT people who are very good medical professionals. I'm a Respiratory Therapist and sometimes wonder if I didn't know the right questions to ask...where would I be then! I am really glad to have found this message board! It is a great source of support!
Wow it sounds like your ordeal is quite complicated. I'm glad they have you scheduled for surgery though, since we both know it won't go away by itself! :(
The anterior approach scared me when they first mentioned it but afterward I had no incisional pain and very little discomfort (some slight neck/shoulder pain and some trouble swallowing). These were both temporary and lasted only a week or so.
My rehab doctor said that activity should help spasticity but I find that the more I do, the more my muscles spasm. He says I have an atypical movement disorder of unknown etiology. Duh...I didn't have this before the disk rupture!!! Needless to say I'm relying mostly on my primary doctor and the PT people who are very good medical professionals. I'm a Respiratory Therapist and sometimes wonder if I didn't know the right questions to ask...where would I be then! I am really glad to have found this message board! It is a great source of support!
Niki47
04-02-2003, 12:56 AM
Hi guys... trying to post again. It has been awhile, and may not go thru. Boo Hiss. If so tho, know that I am out here and will help as I can.
Latest MRI shows Post Traumatic damage and/or syrinx at c-7, so I am back to the nuerosurgeon Thursday. Man... it just doesn't seem to stop!!
Mel, glad you are here to give a hand to the myelopathy folks!! You have "come a long way Baby"..lol You guys listen to her! She is getting to be an old pro!! Smile
Niki47
Latest MRI shows Post Traumatic damage and/or syrinx at c-7, so I am back to the nuerosurgeon Thursday. Man... it just doesn't seem to stop!!
Mel, glad you are here to give a hand to the myelopathy folks!! You have "come a long way Baby"..lol You guys listen to her! She is getting to be an old pro!! Smile
Niki47
Debbie2
04-02-2003, 08:05 AM
Niki, I'm so excited that you're here.... yippee!
Debbie
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
Debbie
------------------
Debbie2
ACDF fusion (c5c6) with titanium plate and screws using donor bone -
September 4, 2002.
melanie dawn
04-02-2003, 09:32 PM
Niki, so happy to see you here. Welcome back, we've really missed. I am soooo happy that you are here!!!!
Mel
Mel
bdb
04-02-2003, 09:47 PM
I'm another one with myelopathy. I had my ACDF C5-6 a year ago and I'm still having problems so I am off to the surgeon next week to find out what is what. My problems stem from a herniated disk from a car accident 2 and 1/2 years ago.
bdb
[This message has been edited by bdb (edited 04-02-2003).]
bdb
[This message has been edited by bdb (edited 04-02-2003).]
2MnyHats
04-02-2003, 10:14 PM
Hi Bdb...thanks for responding :) How long did you have your myelopathy before the ACDF? I also have a mild compression of the cord at T11-12 and compression of the thecal sac at T7-8. The neurosurgeon said the thoracic is not responsible for the continued myelopathy so he will not do any surgery for it at this time. Only time will tell. What symptoms does your myelopathy cause you?
Vicky
Vicky
bdb
04-03-2003, 12:21 AM
I have had symptoms since shortly after my accident 2 and 1/2 years ago. I had my surgery 1 year ago. I was having problems walking. I pretty much had to get in the gym myself and walk on a treadmill and teach myself how to walk as my doctor did not believe me about my pain and injuries. I still walk funny. If I try to walk fast I end up walking without bending my knees or ankles and I sort of swing my legs from the hips at times. I have problems with my hands a lot. They aren't numb all the time like they were before my surgery but they do hurt a lot. As do my wrists and my elbow. If I have my head down, at times, I go pins and needles from the shoulders down or the waist down. There are times I just get a buzzing in my legs when I put my head down. Before my surgery I stopped breathing 3 times. Once I moved my head I started breathing again though. Since my surgery I have had episodes where after I was doing something for too long with my head down I sort of stop breathing or moving. I feel like my heart is not beating as if I am in a void but if I tell myself to move my head and I do it, I come out of it. I do get a lot more muscle spasms then I ever have and I am becoming much weaker then I was. Before my surgery I did have some bladder problems that cleared up after my surgery. It is all pretty scary. my hands don't work as well when I am doing things like moving my keys around in them to get my house key. I have a hard time peeling potatoes and cutting cheese but that has gotten a bit better since my surgery. I could not open jars before my surgery but got much better with that after surgery but I notice that I am starting to have a hard time with that again. I do wear a splint at night on my thumb because if I don't it curls over. I have a lesion at C5-6 that was myelomalacia but the last MRI scan is saying it could be a small syrinx. This is much more pronounced since the MRI from before my surgery. I also have what they think is another myelomalacia lesion at C2 now. I see the surgeon next week and hopefully I will see then what is what. I never was in a wheelchair but thought I should have been a couple of times. I do not use a walker or cane either. I am very lucky that can still get around by myself.
Now I am not sure what is radiculopathy and what is myelopathy. I do have the discs above and below my fusion bulging and slightly to moderately compressing the cord. I should mention that I have horrible pain under across the right back lower ribs. This goes around to my side. I did have 3 broken right back ribs after the accident
bdb
[This message has been edited by bdb (edited 04-02-2003).]
Now I am not sure what is radiculopathy and what is myelopathy. I do have the discs above and below my fusion bulging and slightly to moderately compressing the cord. I should mention that I have horrible pain under across the right back lower ribs. This goes around to my side. I did have 3 broken right back ribs after the accident
bdb
[This message has been edited by bdb (edited 04-02-2003).]
BWL
04-03-2003, 12:31 AM
Hi 2Mny,
I have nothing to add to the thread not being familiar with the ins and out of myelopathy, but I wanted to say hello and welcome to the board. As you can already see the advice is priced to sell and free flowing.
Take care,
Bruce :)
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ACDF with plating and donor bone C6-7 (1/29/03)
[This message has been edited by BWL (edited 04-02-2003).]
I have nothing to add to the thread not being familiar with the ins and out of myelopathy, but I wanted to say hello and welcome to the board. As you can already see the advice is priced to sell and free flowing.
Take care,
Bruce :)
------------------
ACDF with plating and donor bone C6-7 (1/29/03)
[This message has been edited by BWL (edited 04-02-2003).]
2MnyHats
04-03-2003, 08:20 AM
Thanks bwl for the nice welcome!
brb - Thanks for sharing with me. It sounds like you have really been through the wringer! I have no idea how my C5-6 ruptured. Wish I did --- then whatever it was I would not do again! I joke with my husband that he nudged me a little to hard to get me to stop snoring :D
Have you had an MRI of your thoracic spine? The area of pain that you speak of going around to the side sounds like it could come from a thoracic level. Of course, cervical myelopathy can cause problems at the cervical level as well as any of the lower tracts that run through it.
Are you working right now? I really count my blessing because my physician has kept me off since surgery in Jan 2003. It's likely that I can not go back to my job as a Respiratory Therapist now or maybe ever. This I have some sad feelings about! I do homeschool our four children so at least I'm still in shape to do this.
Are you driving? My doc won't let me because of the spasticity in my right leg. I really miss that too. Sorry for all the whining...I'm not usually like that. It does feel good to vent though.
Vicky
brb - Thanks for sharing with me. It sounds like you have really been through the wringer! I have no idea how my C5-6 ruptured. Wish I did --- then whatever it was I would not do again! I joke with my husband that he nudged me a little to hard to get me to stop snoring :D
Have you had an MRI of your thoracic spine? The area of pain that you speak of going around to the side sounds like it could come from a thoracic level. Of course, cervical myelopathy can cause problems at the cervical level as well as any of the lower tracts that run through it.
Are you working right now? I really count my blessing because my physician has kept me off since surgery in Jan 2003. It's likely that I can not go back to my job as a Respiratory Therapist now or maybe ever. This I have some sad feelings about! I do homeschool our four children so at least I'm still in shape to do this.
Are you driving? My doc won't let me because of the spasticity in my right leg. I really miss that too. Sorry for all the whining...I'm not usually like that. It does feel good to vent though.
Vicky
winged phantom
04-03-2003, 10:36 AM
Vicky, don't ever worry about whining too much here. The good thing about this group is that there is no "whine quota in the contract" (to steal a great phrase). We all have things to whine about, because we miss being "normal" and we HURT. So we have all this, and more, in common. These are things that we cannot always expect our family and friends to understand. Gee, if pain wasn't so invisible!
Well, now I've lost my train of thought... Don't ya just hate it when that happens? But you get the gist of it. Anyway, welcome to the board.
wr :wave:
Well, now I've lost my train of thought... Don't ya just hate it when that happens? But you get the gist of it. Anyway, welcome to the board.
wr :wave:
bdb
04-04-2003, 12:19 PM
Vicky, No I am not working. Yes I am driving. Yes I have had a thoracic MRI scan done that the report said was negative. I am going to get the surgeons to check the films though.
bdb
bdb
winged phantom
04-04-2003, 01:51 PM
bdb,
Your story sent shivers up and down my spine. I feel so sorry for all you have been through and are still dealing with. Have a good day. http://www.healthboards.com/ubb/heart.gif
wr :wave:
Your story sent shivers up and down my spine. I feel so sorry for all you have been through and are still dealing with. Have a good day. http://www.healthboards.com/ubb/heart.gif
wr :wave:
BWL
04-04-2003, 02:33 PM
bdb,
Sorry about your residual accident woes. To only have your fears compounded by an aloof doc can be so demoralizing.
I'm curious about this "void" you describe. Is it anything like the experience you sometimes have when driving when you all of a sudden realize that you weren't paying attention or weren't "in the moment" for a little while?
Be well,
Bruce :wave:
------------------
ACDF with plating and donor bone C6-7 (1/29/03)
Sorry about your residual accident woes. To only have your fears compounded by an aloof doc can be so demoralizing.
I'm curious about this "void" you describe. Is it anything like the experience you sometimes have when driving when you all of a sudden realize that you weren't paying attention or weren't "in the moment" for a little while?
Be well,
Bruce :wave:
------------------
ACDF with plating and donor bone C6-7 (1/29/03)
Niki47
04-04-2003, 03:28 PM
Hi Hats,
I have read many accounts of people blowing out a disc in their sleep. So your joke about the husband's "nudge" is close to the truth. We tend to shift in our sleep into many odd positions... and you may have truly just woke up one day and "Wham!", there it was.
Also... on a more serious note... I too suffer from what I call "systems interruptions", like the voids someone mentioned. This can be a fairly serious thing that comes from the "autonomic nervous system", and I believe can happen with high level injury and cord damage.
Well, hope all are doing ok...
Melanie... have you given any thought to the media campaign?? I think you need to have some kind of a rally!! Or maybe Picket!! LOL If you need us, we can have a "think tank" session and all give our ideas!! I am appalled, so I bet alot of other people would be too if they knew.
Love, niki
I have read many accounts of people blowing out a disc in their sleep. So your joke about the husband's "nudge" is close to the truth. We tend to shift in our sleep into many odd positions... and you may have truly just woke up one day and "Wham!", there it was.
Also... on a more serious note... I too suffer from what I call "systems interruptions", like the voids someone mentioned. This can be a fairly serious thing that comes from the "autonomic nervous system", and I believe can happen with high level injury and cord damage.
Well, hope all are doing ok...
Melanie... have you given any thought to the media campaign?? I think you need to have some kind of a rally!! Or maybe Picket!! LOL If you need us, we can have a "think tank" session and all give our ideas!! I am appalled, so I bet alot of other people would be too if they knew.
Love, niki