captnanny
06-06-2007, 09:25 AM
hello, It's me again, I can't wait until I can post an optimistic thread. I feel like i am starting to sound like a four year old whiney kid. I had a 2 level acdf, c456 on april 13. The pain went down for a while and I really felt like the surgery worked. I had post op pain so I was able to do what the said. Now about 2 weeks ago the pain started getting worse. It is now as bad as it was before surgery. I was crying so hard in pain yesterday that it made the pain worse. on May 22 my xray looked good, signs of fusion so they said I was on the mend. Now I think I did something because my whole arm is numb and my neck is completely on fire!!!!! I have called the doc, but not made another appointment, the nurse usually lets me know if i need to see him. I have a question though. my mri showed c2-3 and 6-7 were also bad. They told my mom at the surgery that they looked worse when they were doing the other two but would have to hope that the pt and this surgery worked for the pain.
I feel like the pain is killing me and I can't stop crying cause i feel like a failure.
any suggestions, I don't know where else to vent about this except on this board, my friends are tired of me.:mad: :blob_fire :eek:
I feel like the pain is killing me and I can't stop crying cause i feel like a failure.
any suggestions, I don't know where else to vent about this except on this board, my friends are tired of me.:mad: :blob_fire :eek:
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BobM
06-07-2007, 12:07 AM
Hello capt
It's ok to vent here...
I'll share my experience, maybe there is something in that you can relate to. I had a neck injury 15 years ago, that was not diagnosed until 3 years ago. The initial MRI showed DDD at C4/5/6/7/8. I had developed a number of neurological deficits along with the pain, but the symptoms were associated only with C5/6/7. So, even though the other levels looked 'bad' on the MRI, the surgeon would only operate on the levels that were causing problems. A year after the first ACDF I went back for a second one, for C4/5, because it had started to cause problems. I have the prospect of more surgery if I live long enough.
The surgeon explained that a lot of people in my age group (50+) have discs that look bad on an MRI, but for most people the bad discs are not creating a problem, so they typcially won't operate based on appearance alone - there needs to be evidence of problems. Some surgeons appear reluctant to even operate just for pain (from what I read here), but things like weakness or atrophy, numbness, etc., can make the case for recommending surgery.
For people like me, that approach results in repeat surgery, but it seems to be sound medical practice for 'most' people.
A few weeks after my 2nd ACDF I had a return of the pain and numbness - it turned out to be inflammation of the cervical nerves, probably due to being manipulated during the surgery. I reported it to the surgeon, and was treated successfully with a course of steroids to reduce the swelling. So, be sure and report all post op problems promptly - maybe it is something relatively easy to treat, like in my case.
Hang in there - dealing with our problems can really try our souls, but the key is to avoid getting discouraged - and I know it is sometimes way easier to say than to do!
It's ok to vent here...
I'll share my experience, maybe there is something in that you can relate to. I had a neck injury 15 years ago, that was not diagnosed until 3 years ago. The initial MRI showed DDD at C4/5/6/7/8. I had developed a number of neurological deficits along with the pain, but the symptoms were associated only with C5/6/7. So, even though the other levels looked 'bad' on the MRI, the surgeon would only operate on the levels that were causing problems. A year after the first ACDF I went back for a second one, for C4/5, because it had started to cause problems. I have the prospect of more surgery if I live long enough.
The surgeon explained that a lot of people in my age group (50+) have discs that look bad on an MRI, but for most people the bad discs are not creating a problem, so they typcially won't operate based on appearance alone - there needs to be evidence of problems. Some surgeons appear reluctant to even operate just for pain (from what I read here), but things like weakness or atrophy, numbness, etc., can make the case for recommending surgery.
For people like me, that approach results in repeat surgery, but it seems to be sound medical practice for 'most' people.
A few weeks after my 2nd ACDF I had a return of the pain and numbness - it turned out to be inflammation of the cervical nerves, probably due to being manipulated during the surgery. I reported it to the surgeon, and was treated successfully with a course of steroids to reduce the swelling. So, be sure and report all post op problems promptly - maybe it is something relatively easy to treat, like in my case.
Hang in there - dealing with our problems can really try our souls, but the key is to avoid getting discouraged - and I know it is sometimes way easier to say than to do!
monarog
06-07-2007, 12:00 PM
Hi All,
Bob...I was wondering, how is the swelling of the cervical nerves detected? How do they diagnose that this is for sure what's causing the pain?
I am apprx. 3 months post-op ACDF, C6-7, cord compression. I have seen little to no improvement in neck/arm pain so far. The majority of my terrible neuro symptoms remain as well - which is more bothersome and uncomfortable for me than the pain - though the pain does wear me out. I just saw my NS at 9 wks, x-ray shows I'm 90% fused already - he says everything looks really great. But I don't feel that way at all. I have no other follow-up with him as everything "looks good." I think he doesn't know what else he can do for me so he sent me to PT. I don't mean to be negative, but I struggle being optimistic that this will be helpful - especially with the terrible neuro stuff. Thanks for info. Mona
Bob...I was wondering, how is the swelling of the cervical nerves detected? How do they diagnose that this is for sure what's causing the pain?
I am apprx. 3 months post-op ACDF, C6-7, cord compression. I have seen little to no improvement in neck/arm pain so far. The majority of my terrible neuro symptoms remain as well - which is more bothersome and uncomfortable for me than the pain - though the pain does wear me out. I just saw my NS at 9 wks, x-ray shows I'm 90% fused already - he says everything looks really great. But I don't feel that way at all. I have no other follow-up with him as everything "looks good." I think he doesn't know what else he can do for me so he sent me to PT. I don't mean to be negative, but I struggle being optimistic that this will be helpful - especially with the terrible neuro stuff. Thanks for info. Mona
monarog
06-07-2007, 12:05 PM
Hi Captnanny...
I wish I could give you advice. But I am also struggling post-op like you. Just wanted to say, this board is a great place to vent. I mean, misery loves company, right? :dizzy: Also, hopefully, you'll hear some sound advice from those who have been where you (we) are. Good luck...please keep us posted. I am sorry to hear you're struggling; I hope things get better for you soon.
Mona
I wish I could give you advice. But I am also struggling post-op like you. Just wanted to say, this board is a great place to vent. I mean, misery loves company, right? :dizzy: Also, hopefully, you'll hear some sound advice from those who have been where you (we) are. Good luck...please keep us posted. I am sorry to hear you're struggling; I hope things get better for you soon.
Mona
neckpatient
06-08-2007, 03:22 AM
Yes our problems can be frustrating. Let me ask a few questions.
1. Are you wearing a collar of any kind?
2. How do you sleep - what position? Any special pillows etc. that you are using?
3. How have you increased your activity during that time?
4. Are you doing any driving or riding in cars frequently?
5. What is the heaviest thing you are lifting?
6. Are you doing PT right now? If so what are they doing with you?
7. Did you have burning pain before is this a new kind of pain?
Some people take longer to heal than others. The nerves also go through many rounds of healing, i.e. they feel better, we do more, we feel worse, repeat. Its like a vicious cycle. When you have had significant trauma of the nerves, it can take a long time for healing. This doesn't not just happen overnight. Improvement can take up to one year or longer, with small baby steps.
You can't judge your case on what happened if someone else was magically cured after surgery, everyone is different and our problems that were fixed are of varying degrees.
Sorry you don't feel better, hope you can answer these questions and I might have some advice for you.
1. Are you wearing a collar of any kind?
2. How do you sleep - what position? Any special pillows etc. that you are using?
3. How have you increased your activity during that time?
4. Are you doing any driving or riding in cars frequently?
5. What is the heaviest thing you are lifting?
6. Are you doing PT right now? If so what are they doing with you?
7. Did you have burning pain before is this a new kind of pain?
Some people take longer to heal than others. The nerves also go through many rounds of healing, i.e. they feel better, we do more, we feel worse, repeat. Its like a vicious cycle. When you have had significant trauma of the nerves, it can take a long time for healing. This doesn't not just happen overnight. Improvement can take up to one year or longer, with small baby steps.
You can't judge your case on what happened if someone else was magically cured after surgery, everyone is different and our problems that were fixed are of varying degrees.
Sorry you don't feel better, hope you can answer these questions and I might have some advice for you.
settingsons
06-08-2007, 06:52 AM
Monarog,
I am similar to you except I am 4.5 months post-op ACDF, C5-6 Solis cage with no plate and screws, some cord compression. I have detailed my problems in an earlier post this week.
When I had my six week x-rays I was also told that I was fusing nicely but I still had a lot of arm pain in both arms plus my other symptoms. Because of this the NS said he will MRI me at 3-months but he said say that because I have had the problem for a long time the nerves can take up to six months to settle down.
At 3 months I still had arm pain and I had the MRI and it did show residual foraminal stenosis which may still be causing the pain. I am not saying you have this problem because it is quite unusual as far as I am aware, but if you want to know for sure you could request an MRI.
I have been doing a lot of reading through some old posts in this forum, and I can see that everyone is quite dramatically different especially in terms of recovery time. I am also amazed at how some surgeons want people in a collar, some don't want collars worn at all, some use plate and screws and some don't, some allow anti-inflam. medication such Ibuprofren and some don't because they say it affects fusion.
One very useful post to read is a diary by TheCraw
http://www.healthboards.com/boards/showthread.php?t=221135&highlight=acdf+diary
It is very long post but I would recommend you print it off and read it. When you feel down - read it again! It can be very comforting as it shows how the pain is up and down over many many months.
If you don't read all of the above thread then at least read this bit which talks about what the physio said about the nerves:
http://www.healthboards.com/boards/showthread.php?t=221135&page=10&highlight=rugby+physio
Best of luck and I hope you are feeling better soon.
I am similar to you except I am 4.5 months post-op ACDF, C5-6 Solis cage with no plate and screws, some cord compression. I have detailed my problems in an earlier post this week.
When I had my six week x-rays I was also told that I was fusing nicely but I still had a lot of arm pain in both arms plus my other symptoms. Because of this the NS said he will MRI me at 3-months but he said say that because I have had the problem for a long time the nerves can take up to six months to settle down.
At 3 months I still had arm pain and I had the MRI and it did show residual foraminal stenosis which may still be causing the pain. I am not saying you have this problem because it is quite unusual as far as I am aware, but if you want to know for sure you could request an MRI.
I have been doing a lot of reading through some old posts in this forum, and I can see that everyone is quite dramatically different especially in terms of recovery time. I am also amazed at how some surgeons want people in a collar, some don't want collars worn at all, some use plate and screws and some don't, some allow anti-inflam. medication such Ibuprofren and some don't because they say it affects fusion.
One very useful post to read is a diary by TheCraw
http://www.healthboards.com/boards/showthread.php?t=221135&highlight=acdf+diary
It is very long post but I would recommend you print it off and read it. When you feel down - read it again! It can be very comforting as it shows how the pain is up and down over many many months.
If you don't read all of the above thread then at least read this bit which talks about what the physio said about the nerves:
http://www.healthboards.com/boards/showthread.php?t=221135&page=10&highlight=rugby+physio
Best of luck and I hope you are feeling better soon.
monarog
06-08-2007, 08:09 PM
Dear Settingsons,
Thanks so much for taking the time to post. I definitely will be printing those threads off and reading through them. I am reading this board almost daily and often am just looking for - not only information - but hope and encouragement. It's been such a long, crazy road. I hope you too start seeing improvement and get to feeling better. Thanks again - MUCH appreciated. Mona
Thanks so much for taking the time to post. I definitely will be printing those threads off and reading through them. I am reading this board almost daily and often am just looking for - not only information - but hope and encouragement. It's been such a long, crazy road. I hope you too start seeing improvement and get to feeling better. Thanks again - MUCH appreciated. Mona
captnanny
06-09-2007, 06:25 AM
thank you so much for all the great feedback. Today I am going for an mri and I just hope it's not going to show bad news around the other two discs. I do have foraminal narrowing, or something like that with mild to moderate stenosis. I now have a soft collar, was in hard collar for five weeks, in pt twice a week, which is when the pain really started coming back and am doing more when I feel better. I have lifting restrictions so I don't know what can be going on. The doctor said that the nerves were compressed for so long that it is going to take some time and that some phases will be good and then the nerves will fire up again. It is the worst. NOT TO SAY THAT MY MOM WANTS ME TO HAVE A FULL TIME TEACHING JOB IN THE FALL AND IS ON MY BACK ALL THE TIME. NO HELP FROM HER!!!!!That makes me mad, but i am glad for this board and for all your support I'll check back when i have the mri results or maybe to whine a little more.
monarog
06-09-2007, 10:36 AM
Dear Captnanny,
I am SO SORRY to hear about the pressure from your mom. How crazy is that? Not to be overly dramatic, but I just think unless you've been through it, people just have a hard time relating or understanding.
Yes, please post when you get your MRI results. I will be thinking of you and hoping your other discs are not causing problems, ugh! Take care. Mona
I am SO SORRY to hear about the pressure from your mom. How crazy is that? Not to be overly dramatic, but I just think unless you've been through it, people just have a hard time relating or understanding.
Yes, please post when you get your MRI results. I will be thinking of you and hoping your other discs are not causing problems, ugh! Take care. Mona
settingsons
06-09-2007, 06:14 PM
Hello again everyone,
Best of luck with your MRI captnanny. Please let us know how you get on.
I think I need to air a few more of my worries if that is ok! I am having a really bad flare up the last couple of weeks especially the last couple of days. I live in England so I don't know if you get the same pressures in the states as we do here. Because I have been off from work since September 06, and only had my surgery in late January my company's insurer sent me on a 'functional capacity assessment' two weeks ago. I felt I was making some slow progress before the assessment but the assessment has certainly put me backwards. They got me to look up/down/left/right to the extremities much more that I ever dared before. They got me to push/pull on a bar exerting pressure, and various other tricky movements. I was shattered after two hours but I was worried about not making my best effort because I read that if you do not make your best effort they can detect it (they film it), and there is a chance the insurance will not pay me. The test is called J-tech FCE.
Both my arms are hurting again since the tests, my legs ache and burn like hell (which has been a problem for 6 years), and I have sharp stabbings in the back of the neck today (like I was getting after the surgery for about 6 weeks). I feel that where I should just be concentrating on making a recovery, I am additionally worried about the outcome of the assessment because if they don't pay me I cannot support my wife and two little children.
Do you think they were irresponsible in asking me to perform such tests just 4 months after my C5/C6 ACDF surgery bearing in mind that I told them that my post-op MRI still shows foraminal stenosis?
The physio performing the tests did NOT seem very knowledgable and when I kept saying I am concerned about various movements she said 'oh its fine'. I am also worried that I may have moved the cage in my neck. I keep telling myself maybe I have inflamed the nerves although I am not sure how this could happen if the disk has been removed (unless its the stenosis).
Any thoughts would greatly be appreciated.
Best of luck with your MRI captnanny. Please let us know how you get on.
I think I need to air a few more of my worries if that is ok! I am having a really bad flare up the last couple of weeks especially the last couple of days. I live in England so I don't know if you get the same pressures in the states as we do here. Because I have been off from work since September 06, and only had my surgery in late January my company's insurer sent me on a 'functional capacity assessment' two weeks ago. I felt I was making some slow progress before the assessment but the assessment has certainly put me backwards. They got me to look up/down/left/right to the extremities much more that I ever dared before. They got me to push/pull on a bar exerting pressure, and various other tricky movements. I was shattered after two hours but I was worried about not making my best effort because I read that if you do not make your best effort they can detect it (they film it), and there is a chance the insurance will not pay me. The test is called J-tech FCE.
Both my arms are hurting again since the tests, my legs ache and burn like hell (which has been a problem for 6 years), and I have sharp stabbings in the back of the neck today (like I was getting after the surgery for about 6 weeks). I feel that where I should just be concentrating on making a recovery, I am additionally worried about the outcome of the assessment because if they don't pay me I cannot support my wife and two little children.
Do you think they were irresponsible in asking me to perform such tests just 4 months after my C5/C6 ACDF surgery bearing in mind that I told them that my post-op MRI still shows foraminal stenosis?
The physio performing the tests did NOT seem very knowledgable and when I kept saying I am concerned about various movements she said 'oh its fine'. I am also worried that I may have moved the cage in my neck. I keep telling myself maybe I have inflamed the nerves although I am not sure how this could happen if the disk has been removed (unless its the stenosis).
Any thoughts would greatly be appreciated.
Backinthesaddle
06-10-2007, 11:26 AM
If you have read any of my recent posts you see I am 16 months post acdf c4/5 and still experience hand and arm pain. Of course shoulder and neck pain. I get spasms in my shoulder blades and tricep areas. Sometimes the area between my palm and elbow. I finally got the MRI and it showed the neuroforminal narrowing (moderate) at the C6/7 loc where I had ahd the decompression surgery. I hurt all the time. I take lyrica, baclefon, and ultram to ease the pain. I can still do most things like workout. Nothing is without pain. My doc has put into workers comp that I will need a fusion at C6/7. Now how this sorta relates to everyone else......I do not know what is caused from the moderately severe spinal cord compression I had for 18 months. Doc told me that the pain was just here and would likely not go away.....ever............I cried.....All I can hope for is some relief when I get the next acdf and hopefully WC approves it without a fight. I have been like this now for over 2 years and most likely will never have a day free of pain but may have less and can get off the meds.
captnanny
06-11-2007, 04:49 AM
ok,
i was reading my mri reports before surgery and it did show disk protrusion and mild decompression at c6-7. That is the area where I had the mri yesterday. I have been trying to read it but the mri person said that I was moving so much that the films were blurry. this was involuntary movement, I swear i was not moving. My left arm was numb but I was not moving at all. Could the disk protrusion go away? and the decompression? Those are the questions I need to know. The pain now is almost like I've been bruised all over the neck and arm along with other pain. I have to ask the nurse today for another pain management doc. The one I had refused to answer anyones pages to her for two weeks, my ortho and psychiatrist. I AM SO MAD I won't go into see her tomorrow until she talks to someone.
i was reading my mri reports before surgery and it did show disk protrusion and mild decompression at c6-7. That is the area where I had the mri yesterday. I have been trying to read it but the mri person said that I was moving so much that the films were blurry. this was involuntary movement, I swear i was not moving. My left arm was numb but I was not moving at all. Could the disk protrusion go away? and the decompression? Those are the questions I need to know. The pain now is almost like I've been bruised all over the neck and arm along with other pain. I have to ask the nurse today for another pain management doc. The one I had refused to answer anyones pages to her for two weeks, my ortho and psychiatrist. I AM SO MAD I won't go into see her tomorrow until she talks to someone.