jshu43
03-28-2009, 11:32 AM
I'm wondering if anyone here has had the same problem. I first went to a surgeon who said I needed to have an ACDF for C5-7. Then I went to get a second opinion and the surgeon told me that I had bad discs from C2-8 and that he would want to do at least C4-7. The problem with that he said was that the more discs that you do, the greater the loss of mobility and then you also put stress on the adjoining discs which aren't in great shape and then I will end up having to go back and do more. I have numbness in my arm and hands, but really my big issue is the pain in my neck and upper back and shoulders - it's excruciating and keeps me from even being able to sit for any length of time without being in agony. I'm for all practical purposes disabled because I have to lay back in bed most of the day. I'm only 57 and feel I have a lot of life left in me to live and each year my spine degenerates further.
The surgeon wants me to go for diagnostic injections before he makes his final decision. Now I like this doctor and he makes sense. I don't want to have surgery if I would be worse off. I guess that's the question - I'm pretty bad now - and I don't have a lot of mobility in my neck anyway.
Does anyone have any advise or experience? Thanks!!
The surgeon wants me to go for diagnostic injections before he makes his final decision. Now I like this doctor and he makes sense. I don't want to have surgery if I would be worse off. I guess that's the question - I'm pretty bad now - and I don't have a lot of mobility in my neck anyway.
Does anyone have any advise or experience? Thanks!!
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sammyo1
03-29-2009, 09:05 AM
jsh, I am so sorry that is tough. I think trying the injections first may be wise. It may let you know what areas are causing you the most pain. If surgery is decided on that would be the area to target. I think alot of us know how you feel. It takes all your energy when your in pain like that & makes you feel alot older then you are. Have you set up the injections yet? Do you see a pain management doctor? I would think it you dont you would need to with all those discs involved. Do you have DDD? I have started alot of supplements to try to help myself as much as I can. I am sure people question whether they really work but I figure what do I have to loose.
I also noted that a client of mine went for her bone desity test after being on calcium & a script for med. for bone loss. I noticed the one area that had a small amount of improvement was her lumbar spine. She did not have a problem in the C area, but this showed me that you never know & it cant hurt to try. My surgeon told me to make sure I take calcium everyday.
I feel for you & just wanted you to know your in my thoughts & prayers. Sammy
I also noted that a client of mine went for her bone desity test after being on calcium & a script for med. for bone loss. I noticed the one area that had a small amount of improvement was her lumbar spine. She did not have a problem in the C area, but this showed me that you never know & it cant hurt to try. My surgeon told me to make sure I take calcium everyday.
I feel for you & just wanted you to know your in my thoughts & prayers. Sammy
jshu43
03-29-2009, 11:00 AM
Hi Sammy,
I am thinking of waiting a couple of weeks for the diagnostic test - I had one more surgeon that I had an appt with. He was recommended by my cardiologist who is one of the best in Houston. His office had told me that they don't really recommend steroid injections. So, I will wait until I see him before I go ahead. I think it's probably a good idea to do though. I'll be curious to hear what he says. His office told me that they wouldn't have made an appt with me unless he felt he could help me.
I do have a pain management doctor that I just started seeing. He wants to do the steroid injections. The last doctor wants me to go to his specialist for the testing though. Afterwards I could go to the PM doc if they think that is the way to go.
They said I had DDD and cervical spondylosis and degenerative spondyloisthesis, canal stenosis and spinal cord deformity w/o compression. Also foraminal stenosis. IN my bone scan the doctor said it showed I have bone on bone causing a lot of problems.
I am taking calcium and Vit D every day. I have osteoporosis and recently had a Reclast infusion (which somehow has upped my pain significantly.) I've tried everything else for years but the steroid injections. I've had Botox, chiro, accupuncture, Radiofrequency of the facet joints - nothing seems to work. I hate to live on medication which doesn't even touch the pain anyway. But, you know, I'm seeing some doctors, and I will kind of weigh them all and see who I feel makes the most sense. The first surgeon said that I had 0% chance of getting any relief other than surgery and w/ sugery I had an 80% chance of have significant relief. But I don't fully trust him. I do tend to trust the last doctor more. I will probably end up having the diagnostic tests and then see if they think they can address them w/ surgery and go from there.
One other problem that concerns me is that the numbness in my hands seems to be getting a tiny bit worse. I don't know how long I will be able to afford health insurance. If I don't get surgery soon, I may never be able to get it. That's not a reason to push ahead w/ surgery that I shouldn't have - but it is something that I have to think about.
I am thinking of waiting a couple of weeks for the diagnostic test - I had one more surgeon that I had an appt with. He was recommended by my cardiologist who is one of the best in Houston. His office had told me that they don't really recommend steroid injections. So, I will wait until I see him before I go ahead. I think it's probably a good idea to do though. I'll be curious to hear what he says. His office told me that they wouldn't have made an appt with me unless he felt he could help me.
I do have a pain management doctor that I just started seeing. He wants to do the steroid injections. The last doctor wants me to go to his specialist for the testing though. Afterwards I could go to the PM doc if they think that is the way to go.
They said I had DDD and cervical spondylosis and degenerative spondyloisthesis, canal stenosis and spinal cord deformity w/o compression. Also foraminal stenosis. IN my bone scan the doctor said it showed I have bone on bone causing a lot of problems.
I am taking calcium and Vit D every day. I have osteoporosis and recently had a Reclast infusion (which somehow has upped my pain significantly.) I've tried everything else for years but the steroid injections. I've had Botox, chiro, accupuncture, Radiofrequency of the facet joints - nothing seems to work. I hate to live on medication which doesn't even touch the pain anyway. But, you know, I'm seeing some doctors, and I will kind of weigh them all and see who I feel makes the most sense. The first surgeon said that I had 0% chance of getting any relief other than surgery and w/ sugery I had an 80% chance of have significant relief. But I don't fully trust him. I do tend to trust the last doctor more. I will probably end up having the diagnostic tests and then see if they think they can address them w/ surgery and go from there.
One other problem that concerns me is that the numbness in my hands seems to be getting a tiny bit worse. I don't know how long I will be able to afford health insurance. If I don't get surgery soon, I may never be able to get it. That's not a reason to push ahead w/ surgery that I shouldn't have - but it is something that I have to think about.
jennybyc
03-29-2009, 12:55 PM
I'd get a second opinion! I'm fused from C3 to T1 and it's not that bad at all. Now when they have to include C2 you do lose a lot more movement and I'm facing that now and my surgeon will decided on June 3rd. Appears I have herniated the disk at C2-3. Luckily there is no disk between C1-2. But there are people who have their skulls fused to their spines due to malformations they are born with or through accidents and they function just fine. You learn to turn your whole body instead of your head.
Find a neurosurgeon that uses the Vertex System that is modular and allows for long fusions with far better success. Last time I was at the doc I met a man who was fused from C3 to T8. He felt great! The neuro took out all the little plates and screws that had been used by someone else and used this new system and he felt wonderful. No pain.
So long fusions are not the nightmare he has painted which means he doesn't use this system. Go elsewhere...preferably a university associated practice where the neuro teaches. They are the most up to date on the latest techniques. Your guy sounds like he's still in the 70's.
good luck...........Jenny
Find a neurosurgeon that uses the Vertex System that is modular and allows for long fusions with far better success. Last time I was at the doc I met a man who was fused from C3 to T8. He felt great! The neuro took out all the little plates and screws that had been used by someone else and used this new system and he felt wonderful. No pain.
So long fusions are not the nightmare he has painted which means he doesn't use this system. Go elsewhere...preferably a university associated practice where the neuro teaches. They are the most up to date on the latest techniques. Your guy sounds like he's still in the 70's.
good luck...........Jenny
jshu43
03-29-2009, 01:17 PM
Jenny - Thanks for the feedback. Actually, the surgeon I talked with is a part of a big neurology research department with one of the major medical hospitals in Houston. He is a professor of neurosurgery as well. But I think perhaps spinal surgery is just a small bit of his practice. I see a lot more about brain surgery, trimengial nerve, etc when I look him up. I think also the fact that the numbness is not my worst complaint is another reason he is hesitant to operate. I understand that the severe pain from numbness and nerve damage to the arms and hands can be untenable and one must operate. I just am having a hard time getting through my head why debilitating pain in my neck and shoulder and upper back don't warrant some intervention as well. But hopefully, the diagnostic testing will give me some answers on exactly which area is causing the most pain and I can go from there. I also think that the surgeon appropriately wants to make sure his success rate is as high as possible and I know that multiple discs lower one's success rate.
Good tip on finding someone that uses the Vertex System - I will do that.
Do you think that your C2 might be a result of your fusion? The surgeon told me that with fusions, it puts additional stress on the adjoining discs - which makes sense. But then my discs seem to be degenerating any way - a little bit more each year. How long has it been since you had your surgery? What symptoms did you have?
Thanks so much for the encouragement! When I hear and read success stories like the ones you talk about, it gives me hope that I haven't had for years.
Good tip on finding someone that uses the Vertex System - I will do that.
Do you think that your C2 might be a result of your fusion? The surgeon told me that with fusions, it puts additional stress on the adjoining discs - which makes sense. But then my discs seem to be degenerating any way - a little bit more each year. How long has it been since you had your surgery? What symptoms did you have?
Thanks so much for the encouragement! When I hear and read success stories like the ones you talk about, it gives me hope that I haven't had for years.
jshu43
03-29-2009, 01:26 PM
Sammy - I remember now that I had looked up the Vertex System and it seemed like it was for patients who had levels that were cervical and thoracic. I read something that said the cervical area was flexible and the thoracic levels were rigid and therefore the Vertex was made to work with both levels. I see you had both levels done as well. I think I would not need the thoracic level done. There is mild foraminal narrowing in the C7-T1, but it seems like the surgeons are saying I should go through C6-7. So I'm not sure I would be a candidate for the Vertex.
I have mild hypertrophy in C2-C3, moderate hypertrophy and foraminal narrowing, mild disc protrusion w/ mild narrowing at C3-C4 - but I think they probably would only be thinking of doing C4-C7. Not sure really.
Do you know if the Vertex is used just in the cervical area?
I have mild hypertrophy in C2-C3, moderate hypertrophy and foraminal narrowing, mild disc protrusion w/ mild narrowing at C3-C4 - but I think they probably would only be thinking of doing C4-C7. Not sure really.
Do you know if the Vertex is used just in the cervical area?
neckpatient
03-30-2009, 02:53 AM
I wonder if the Reclast caused a temporary Vitamin D imbalance and that upped your pain. The calcium uses the D to allow it to absorb. ??? just guessing.
My goal is to fuse as few as possible and live with what I can, otherwise I would be fusing level by level as they go bad because I have conglomerate of problems like the rest here with the widespread DDD and central canal stenosis. I only fused C4-7 and left C2-3 and C3-4 undone even though they are bulged and one hernated and the foramins are narrowed, I also did not fuse the junction at C7-T1 left that open.
Even still, it sped up the pressue on the thoracic and I have 3 areas of bulges/herniations there now, and just this last year my lumbar also hernaited bad at L4,L5 and S1.
Can't fuse the whole spine - enough is enough for me!!
My goal is to fuse as few as possible and live with what I can, otherwise I would be fusing level by level as they go bad because I have conglomerate of problems like the rest here with the widespread DDD and central canal stenosis. I only fused C4-7 and left C2-3 and C3-4 undone even though they are bulged and one hernated and the foramins are narrowed, I also did not fuse the junction at C7-T1 left that open.
Even still, it sped up the pressue on the thoracic and I have 3 areas of bulges/herniations there now, and just this last year my lumbar also hernaited bad at L4,L5 and S1.
Can't fuse the whole spine - enough is enough for me!!
jshu43
03-30-2009, 09:43 AM
I don't know about the Vit D imbalance - I've been on mega doses of Vit D and I would be surprised that in less than 24 hours it could cause such an imbalance.
You sound like you have a lot of the same problems that I do. I don't think that I would do all of the levels that need to be fixed either. I think that the C4-7 area is the worst. But that is discouraging to hear you have having such problems. Did you get relief when you had your fusion? If you had it to do over again, would you still have the surgery?
You sound like you have a lot of the same problems that I do. I don't think that I would do all of the levels that need to be fixed either. I think that the C4-7 area is the worst. But that is discouraging to hear you have having such problems. Did you get relief when you had your fusion? If you had it to do over again, would you still have the surgery?
jennybyc
03-30-2009, 12:21 PM
You asked if I thought the long fusion had anything to do with my herniating the disk at C2. Actually, it has a lot more to do with tripping over a hose last summer, stumbling down a hillside then losing my shoe and falling flat on the right side of my face so hard my head bounced off the ground. As black and blue as my face was, my neck hurt more and has gotten worse since. Then I fell when I went out in a snowstorm to clear the snow away from the outside of the storm door before I got drifted in. Took 2 steps and down I went. Never even got fully out the door.
I know the disks on either side of a fusion are at risk but they are more at risk when put into a klutz!
Jenny
I know the disks on either side of a fusion are at risk but they are more at risk when put into a klutz!
Jenny
jshu43
03-30-2009, 12:26 PM
Oh, I hurt just reading your accidents! I had surgery a couple of years ago for a tongue advancement (for sleep apnea). My chin was all bandaged up and in so much pain. I went from the hospital to the hotel and while I was going in somehow I tripped on the curb, fell forward and landed right on my chin! I've never done anything like that in my life! Anyway, my chin is so tender to the touch to this day. Not sure it was the accident - but it definitely didn't help!
neckpatient
03-31-2009, 12:49 AM
You should not be discouraged at all, I would do everything all over again. Maybe choose a different surgery if I knew what was to come in the future, or do it sooner. Some might say "oh you are not healed you are not a success". I am a success. I mean I was originally in off the chart pain, constant 24x7, I cannot describe how horrible it was - medicated to a stupor and could not do anything but go to work (that eventually stopped), cry, come home and go to bed, repeat. From the original problem my spine now has widespread DDD and nothing the surgeries did made all that happen - it was in my fate. Nothing they did caused my congenital stenosis - I was born with it, and my short pedicles they cause problems. So we were just fighting anatomy and autoimmune complications.
My biggest wish is to make sure people are educated about what is about to happen to them, and they ask good questions to the doctors, and they have realistic expectations for their case and understand how to best help themselves.
You will find the right answer for yourself!
My biggest wish is to make sure people are educated about what is about to happen to them, and they ask good questions to the doctors, and they have realistic expectations for their case and understand how to best help themselves.
You will find the right answer for yourself!
hugg724
03-31-2009, 04:18 AM
Three years ago, I had C4 to C7 fused. Last year, my MRI showed C3/C4 was herniated and C7/T1 was bulging. Yes, when you have a fusion, you put more wear and tear on the discs above and below the fusion. They are doing the extra work of the fused discs. This can cause the discs to become damaged over time.
When I finally agree to let them do surgery, it will be a bigger surgery than the first fusion. My neurosurgeon told me they will have to go in and remove the hardware in place. They will fuse the other 2 discs. Then they will build a "cage" from C3 down to T1. Right now I minimal problems with range of motion in my neck. The surgeon told me that my range of motion will be quite a bit less after the next surgery but that I will still be able to turn my head to an extent.
I knew it was a possibility when I had the first fusion done. My thought process was.......I can NOT live with this pain any longer so FIX IT NOW! There is no way to know how long, if ever, before the other discs become worn. If it was a year, 2 or 5 years before that happened, then that was a few good years I had. I am not far off from agreeing to the next surgery because the pain is getting worse.
Would I do it this way again? Absolutely!
Good Luck to you!!
When I finally agree to let them do surgery, it will be a bigger surgery than the first fusion. My neurosurgeon told me they will have to go in and remove the hardware in place. They will fuse the other 2 discs. Then they will build a "cage" from C3 down to T1. Right now I minimal problems with range of motion in my neck. The surgeon told me that my range of motion will be quite a bit less after the next surgery but that I will still be able to turn my head to an extent.
I knew it was a possibility when I had the first fusion done. My thought process was.......I can NOT live with this pain any longer so FIX IT NOW! There is no way to know how long, if ever, before the other discs become worn. If it was a year, 2 or 5 years before that happened, then that was a few good years I had. I am not far off from agreeing to the next surgery because the pain is getting worse.
Would I do it this way again? Absolutely!
Good Luck to you!!
jshu43
03-31-2009, 09:37 AM
NP - Thanks for the encouragement - this board is so great. I appreciate getting everyone's input from their experience - I was almost giving up on having surgery after my last doctor's visit and now I am more prepared to ask questions to my doctor. I think that having the diagnostic test sounds reasonable to me - hopefully it will answer which areas are causing the most pain and then I could make a more informed choice as to which areas to do.
Do you think one should get all the bad discs done the first time or just do the most damaged? The reason I ask is that if the fusion is going to put more stress on the adjoining discs, and they aren't great to start with, then if you take care of them up front you might not have to go back in? Or the other thought is to do the bare minimum and just go in every few years and do more as they go bad?
You said you might have a different surgery if you had to do it over again - what would that be? What symptoms were you having before your surgery?
Do you think one should get all the bad discs done the first time or just do the most damaged? The reason I ask is that if the fusion is going to put more stress on the adjoining discs, and they aren't great to start with, then if you take care of them up front you might not have to go back in? Or the other thought is to do the bare minimum and just go in every few years and do more as they go bad?
You said you might have a different surgery if you had to do it over again - what would that be? What symptoms were you having before your surgery?
jshu43
03-31-2009, 09:58 AM
Hugg, thanks so much for the encouragement. It really means so much. Jenny had said earlier in the thread that I should check into the Vertex System for the flexibility for multiple discs. Have you looked into that? Do you think a cage has any effect on the adjoining discs, or is it the same as a regular fusion?
The thought of getting off of the pain meds and going out and doing things I haven't done in years is so exciting that I won't let myself think about it for just a second. It's hard to get my hopes up. I am single and I have a life to look forward to of disability and dependence on others, in too much pain to do more than go out to a quick lunch with a friend once or twice a week. I was turned down for disability, so my parents have to help me out. My career had to be put on hold, my best friends live in different states, my son is out in California. I have a strong faith which keeps me going and sustains me - but I know life has a lot more in store for me. I have Chronic Epstein Barr/Chronic Fatigue Syndrome as well - but I have always thought that the constant pain in my neck and back has weakened my immune system and it does wear you out - I would love to see how my body would respond to having much of the pain taken away.
The thought of getting off of the pain meds and going out and doing things I haven't done in years is so exciting that I won't let myself think about it for just a second. It's hard to get my hopes up. I am single and I have a life to look forward to of disability and dependence on others, in too much pain to do more than go out to a quick lunch with a friend once or twice a week. I was turned down for disability, so my parents have to help me out. My career had to be put on hold, my best friends live in different states, my son is out in California. I have a strong faith which keeps me going and sustains me - but I know life has a lot more in store for me. I have Chronic Epstein Barr/Chronic Fatigue Syndrome as well - but I have always thought that the constant pain in my neck and back has weakened my immune system and it does wear you out - I would love to see how my body would respond to having much of the pain taken away.
neckpatient
03-31-2009, 05:42 PM
jshu43 - for myself, I am in favor of fusing/fixing the levels that are causing the most pain and potential problems with loss of function of nerves or spinal cord, leaving the other "potential problem generators" alone. The spine was not designed to be fused and stiff - it is supposed to have motion, so if we prevent that I think we alter the dynamics of our health. Surgery has it's place, but I also have learned through my problems that surgery doesn't fix everything.
I went back and read your thread from 02/27 and have some advice for you. You say you have been doing this for 20 years, well for a doctor to tell you that the only thing left is surgery to get you relief is ridiculous to set you up with such a high expectation after so many years in pain. And when I read the details of what you wrote on your MRI it looks like you have a generalized arthritic spine in there - lots of hypertrophy (bone enlargement) and the facet joints also have some. To say you have an 80% chance of relief of pain seems aggressive . I think you are going to have some pain regardless of a fusion or not. There is some rotation and I am actually surprised you don't have worse disc problems - but if you are going to fix some the ones at C5-7 look reasonable from what it says here to what they are telling you. It doesn't read like you are a candidate for a micro type surgery - you have too much going on but there is no way to know unless you get a consult. I would definitely get 3 opinions and from doctors that are not related in the same practice. Choose one to be an orthopedic surgeon.
I couldn't tell if you have had epidural spinal injections - but they can do a diagnostic block at C5-6, C6-7 and if you get some relief from that then you would most likely get same relief from the ACDF. If I were you I think I would definitely ask for the diagnostic block prior to making the surgery decision. What is your average pain levels during the day? What is your hope for after the surgery?
For just as many people who go on to surgically fix their problems, there are probably as many who do not proceed with surgery and learn to live with their condition. That is why it is so important to really understand your problem, what is really wrong and choose the best intervention possible for that condition. For example if you are a person who got one herniated disc in a ski accident, and went in and had it taken care of very soon after, it might be likely you will not have any other problems and be pain free. Contrast that with someone who has an aging spine, with widespread bulging, weakening, herniating discs, and bone spurs growing everywhere and squeezing the spinal cord and nerves and this is at multiple levels and places in the spine - this person is probably not going to get the same kind of outcome. So for person number two they can't fix everything - so you look for the most problematic things and work on those.
For me, I was offered a different surgery (multilevel laminectomy (not micro) with fusion) than the ACDF in the very beginning and I turned it down. It was before I understood about all this stuff, I did some research, talked to a few people on the boards (which was in 2004- quite better now!!!!!), and after getting 3 surgical opinions went with the acdf that the (2) surgeons agreed on. It sounded like a slam dunk, back to work, easy thing. I have a lot of "what ifs" but will never know. What if we had opened up more space in the beginning would everything be different, would I still have had the second surgery, etc. no one will ever know.
I'll be watching for your reply. NP
I went back and read your thread from 02/27 and have some advice for you. You say you have been doing this for 20 years, well for a doctor to tell you that the only thing left is surgery to get you relief is ridiculous to set you up with such a high expectation after so many years in pain. And when I read the details of what you wrote on your MRI it looks like you have a generalized arthritic spine in there - lots of hypertrophy (bone enlargement) and the facet joints also have some. To say you have an 80% chance of relief of pain seems aggressive . I think you are going to have some pain regardless of a fusion or not. There is some rotation and I am actually surprised you don't have worse disc problems - but if you are going to fix some the ones at C5-7 look reasonable from what it says here to what they are telling you. It doesn't read like you are a candidate for a micro type surgery - you have too much going on but there is no way to know unless you get a consult. I would definitely get 3 opinions and from doctors that are not related in the same practice. Choose one to be an orthopedic surgeon.
I couldn't tell if you have had epidural spinal injections - but they can do a diagnostic block at C5-6, C6-7 and if you get some relief from that then you would most likely get same relief from the ACDF. If I were you I think I would definitely ask for the diagnostic block prior to making the surgery decision. What is your average pain levels during the day? What is your hope for after the surgery?
For just as many people who go on to surgically fix their problems, there are probably as many who do not proceed with surgery and learn to live with their condition. That is why it is so important to really understand your problem, what is really wrong and choose the best intervention possible for that condition. For example if you are a person who got one herniated disc in a ski accident, and went in and had it taken care of very soon after, it might be likely you will not have any other problems and be pain free. Contrast that with someone who has an aging spine, with widespread bulging, weakening, herniating discs, and bone spurs growing everywhere and squeezing the spinal cord and nerves and this is at multiple levels and places in the spine - this person is probably not going to get the same kind of outcome. So for person number two they can't fix everything - so you look for the most problematic things and work on those.
For me, I was offered a different surgery (multilevel laminectomy (not micro) with fusion) than the ACDF in the very beginning and I turned it down. It was before I understood about all this stuff, I did some research, talked to a few people on the boards (which was in 2004- quite better now!!!!!), and after getting 3 surgical opinions went with the acdf that the (2) surgeons agreed on. It sounded like a slam dunk, back to work, easy thing. I have a lot of "what ifs" but will never know. What if we had opened up more space in the beginning would everything be different, would I still have had the second surgery, etc. no one will ever know.
I'll be watching for your reply. NP
jshu43
03-31-2009, 08:15 PM
NP - Thanks for the reply - you certainly sound like you know quite a bit - exactly what I really need in making this decision.
I do think that the first surgeon I saw was not one that I would have my surgery done by. He was kind of a strange one anyway - he told me that my problem was that God hated women - well, I gathered he meant women were more susceptible to certain kinds of problems - still a silly statement to make - especially on a first ov.
He did base his statement that I would not get any relief on my history. I have tried everything there is to try - except the steroid injections. So, if I can't get any real relief from the injections, there really isn't anything left to try that I know of.
My pain specialist said that one of the areas of pain that is causing me the most pain comes from C4 and the last surgeon I saw said that C4 was just as big a problem as my other discs. He said they would have to be done if I was going to have a fusion.
I don't know if you saw my CT myelogram report, but I'll include it here in case you have any insight to what it all means:
C3-4 Minimal spondylosis. Moderate degenerative hypertrophic changes in the facet joint on the left and minimal degenerative change on the right. There is minimal formaminal narrowing on the left.
C4-5 Minimal spondylolithesis of C4 in relation to C5. Moderate to marked degenerative hypertrophic changes in the facet joint on the right. Mild foraminal stenosis on the right. There is a small central dorsal disk protrusion w/ mild (9-mm) canal stenosis. There is slight indentation of the ventral surface of the spinal cord and slight spinal cord volume loss on the right although there is no cord compression. There is mild foraminal stenosis on the right.
C5-6 There is minimal spondylolisthesis of C5 in relation to C6. There is mild to moderate spondylosis, greater ventrally. There are moderate to marked degenerative and hypertrophic changes in the facet joint on the right. There is minimal foraminal narrowing on the right. There is no spinal stenosis.
C6-7 There is moderate spondylosis and degenerative change in the disk w/ spondylotic change, greater ventrally. There is minimal dorsal spondylosis w/o canal stenosis. There is a somewhat effaced appearance of the lateral recess of the thecal sac on the left and poor filling of the root sleeve on the left. I cannot exclude the possibility of a foraminal disk herniation on the left.
Impression: Cervical spondylosis and degenerative spondylolisthesis at C4-5 and C5-6. There is mild canal stenosis and spinal cord deformity w/o cord compression. There is foraminal stenosis which is greatest on the right at C4-5.
There was also a report that just said Myelogram Cervical:
Prominent dorsolateral defects, as well as root sleeve deformities on the right at C4-5 and C5-6. There is a small root sleeve deformity on the left at C3-4 and questionable minimal root sleeve deformities on the left at C5-6 and C6-7. There is a moderate-sized ventral defect at C6-7 w/ smaller ventral defects at C5-6 and C6-7. There is a moderate sized ventral defect at C6-7 w/ smaller ventral defects at C5-8, C4-5 and C7-T1. Mild canal stenosis at C4-5 and C5-6, but no definite cord compression demonstrated.
I had a Bone Scan that said:
Impression: Evidence of significant degenerative changes in the cervical vertebrae.
Comments: C4 level there was intense uptake involving the left transverse process and facet w/o significant involvement of the body of the vertebra or the right side. At approx. C5 & C6 levels, there was intense uptake in the right transverse processes and facets w/o sig involvement of the body of the vertebrae or the left sides. At approx the C7 level, there was intense uptake involving the body of the vertebra and the left transverse process and facet w/o sig involvement of the right side.
The last surgeon said that there were areas that were basically bone on bone and that in one area he said it looked like my bones had practically fused by themselves.
I've had pain in my neck for almost 20 years, but in 1992 I had a job with intense keyboarding and I started having shooting pains across my upper back. It was so bad that I took muscle relaxers on the weekend and pain pills during the week to be able to make it. I went to a chiropractor, but finally I could no longer work. I couldn't sit at the computer for any length of time without sharp shooting pains. I quit my job and went back to school to get my masters so I could do something else. I went to chiropractors, but was told basically that I was in the 5% of patients that only got short temporary help from chiropractors, but then my body would quickly go back to the way it was. I was diagnosed with Chronic Epstein Barr/Chronic Fatigue Syndrome and between the pain and the fatigue I had to quit school and move back to the city where my parents lived. I could be wrong, but I always felt the pain from my neck and back perhaps had contributed to my immune system problems.
I had an MRI done and it showed damage in the C5-6 discs. I had Lidocaine injections, wore a cervical collar and had physical therapy. I went to a pain specialist who put me on a Tens Unit. I tried pain patches. I had Botox injections, and took pain medication such as Hydrocodone and Oromorph. After several years on this medication I finally decided to get off of most of it because I still was in such pain - I figured I would rather be in pain off of medication than in pain on medication.
I had about 5 or 6 Radiofrequency of the Facet nerves with some relief but then my nerves re-routed and I was told they would no longer work. I've had accupunture.
I am in constant severe pain from my upper back and neck. There is stiffness, burning, vise like grip feeling. I can not sit for any length of time, I must recline or I am miserable. I can't even go to the movies or such things. I would say that my pain levels would be around 8 most of the time - sometimes in the evening it can be higher.
I have occasional numbness in my left hand, but much more in my right hand. My had also gets ice cold.
I really don't have much expectation as to how I would feel after the surgery. I just don't want to be worse off. Lack of mobility doesn't seem that big of a problem as my neck is so stiff that I have lost probably 20% mobility already. I would like to just see if I might be able to get a bit of my life back.
I am going to have the diagnostic block - the doctor is supposed to be calling me in regards to setting it up. That's good advice on going to see an Orthopedic doctor. I have an appt w/ another Neuro that my cardiologist recommended , but I guess I could see a FOURTH! and make him an Ortho. I hate to be running all over to a million doctors - but I really do need to make the right decision.
I appreciate any input you have! Thanks so much!
Judy
I do think that the first surgeon I saw was not one that I would have my surgery done by. He was kind of a strange one anyway - he told me that my problem was that God hated women - well, I gathered he meant women were more susceptible to certain kinds of problems - still a silly statement to make - especially on a first ov.
He did base his statement that I would not get any relief on my history. I have tried everything there is to try - except the steroid injections. So, if I can't get any real relief from the injections, there really isn't anything left to try that I know of.
My pain specialist said that one of the areas of pain that is causing me the most pain comes from C4 and the last surgeon I saw said that C4 was just as big a problem as my other discs. He said they would have to be done if I was going to have a fusion.
I don't know if you saw my CT myelogram report, but I'll include it here in case you have any insight to what it all means:
C3-4 Minimal spondylosis. Moderate degenerative hypertrophic changes in the facet joint on the left and minimal degenerative change on the right. There is minimal formaminal narrowing on the left.
C4-5 Minimal spondylolithesis of C4 in relation to C5. Moderate to marked degenerative hypertrophic changes in the facet joint on the right. Mild foraminal stenosis on the right. There is a small central dorsal disk protrusion w/ mild (9-mm) canal stenosis. There is slight indentation of the ventral surface of the spinal cord and slight spinal cord volume loss on the right although there is no cord compression. There is mild foraminal stenosis on the right.
C5-6 There is minimal spondylolisthesis of C5 in relation to C6. There is mild to moderate spondylosis, greater ventrally. There are moderate to marked degenerative and hypertrophic changes in the facet joint on the right. There is minimal foraminal narrowing on the right. There is no spinal stenosis.
C6-7 There is moderate spondylosis and degenerative change in the disk w/ spondylotic change, greater ventrally. There is minimal dorsal spondylosis w/o canal stenosis. There is a somewhat effaced appearance of the lateral recess of the thecal sac on the left and poor filling of the root sleeve on the left. I cannot exclude the possibility of a foraminal disk herniation on the left.
Impression: Cervical spondylosis and degenerative spondylolisthesis at C4-5 and C5-6. There is mild canal stenosis and spinal cord deformity w/o cord compression. There is foraminal stenosis which is greatest on the right at C4-5.
There was also a report that just said Myelogram Cervical:
Prominent dorsolateral defects, as well as root sleeve deformities on the right at C4-5 and C5-6. There is a small root sleeve deformity on the left at C3-4 and questionable minimal root sleeve deformities on the left at C5-6 and C6-7. There is a moderate-sized ventral defect at C6-7 w/ smaller ventral defects at C5-6 and C6-7. There is a moderate sized ventral defect at C6-7 w/ smaller ventral defects at C5-8, C4-5 and C7-T1. Mild canal stenosis at C4-5 and C5-6, but no definite cord compression demonstrated.
I had a Bone Scan that said:
Impression: Evidence of significant degenerative changes in the cervical vertebrae.
Comments: C4 level there was intense uptake involving the left transverse process and facet w/o significant involvement of the body of the vertebra or the right side. At approx. C5 & C6 levels, there was intense uptake in the right transverse processes and facets w/o sig involvement of the body of the vertebrae or the left sides. At approx the C7 level, there was intense uptake involving the body of the vertebra and the left transverse process and facet w/o sig involvement of the right side.
The last surgeon said that there were areas that were basically bone on bone and that in one area he said it looked like my bones had practically fused by themselves.
I've had pain in my neck for almost 20 years, but in 1992 I had a job with intense keyboarding and I started having shooting pains across my upper back. It was so bad that I took muscle relaxers on the weekend and pain pills during the week to be able to make it. I went to a chiropractor, but finally I could no longer work. I couldn't sit at the computer for any length of time without sharp shooting pains. I quit my job and went back to school to get my masters so I could do something else. I went to chiropractors, but was told basically that I was in the 5% of patients that only got short temporary help from chiropractors, but then my body would quickly go back to the way it was. I was diagnosed with Chronic Epstein Barr/Chronic Fatigue Syndrome and between the pain and the fatigue I had to quit school and move back to the city where my parents lived. I could be wrong, but I always felt the pain from my neck and back perhaps had contributed to my immune system problems.
I had an MRI done and it showed damage in the C5-6 discs. I had Lidocaine injections, wore a cervical collar and had physical therapy. I went to a pain specialist who put me on a Tens Unit. I tried pain patches. I had Botox injections, and took pain medication such as Hydrocodone and Oromorph. After several years on this medication I finally decided to get off of most of it because I still was in such pain - I figured I would rather be in pain off of medication than in pain on medication.
I had about 5 or 6 Radiofrequency of the Facet nerves with some relief but then my nerves re-routed and I was told they would no longer work. I've had accupunture.
I am in constant severe pain from my upper back and neck. There is stiffness, burning, vise like grip feeling. I can not sit for any length of time, I must recline or I am miserable. I can't even go to the movies or such things. I would say that my pain levels would be around 8 most of the time - sometimes in the evening it can be higher.
I have occasional numbness in my left hand, but much more in my right hand. My had also gets ice cold.
I really don't have much expectation as to how I would feel after the surgery. I just don't want to be worse off. Lack of mobility doesn't seem that big of a problem as my neck is so stiff that I have lost probably 20% mobility already. I would like to just see if I might be able to get a bit of my life back.
I am going to have the diagnostic block - the doctor is supposed to be calling me in regards to setting it up. That's good advice on going to see an Orthopedic doctor. I have an appt w/ another Neuro that my cardiologist recommended , but I guess I could see a FOURTH! and make him an Ortho. I hate to be running all over to a million doctors - but I really do need to make the right decision.
I appreciate any input you have! Thanks so much!
Judy
neckpatient
04-01-2009, 04:06 AM
Thank you for posting your additional info and for answering my questions. I am going to study and come back. We have some similarities. I am glad you are getting the diagnostic block that piece of info will be good to have. Be back later.
neckpatient
04-03-2009, 02:39 AM
Hello again, I re-read and thought about what I would do if I were you. There seems to be good enough reason to do a 3 level fusion like the one doctor suggested at C4-7 and probably more reason than only doing two levels. It isn't a stretch at all for them to suggest the 3 levels and actually, probably if you didn't that other level you might find yourself there in surgery again fairly fast. As you can read C4-5 is already taking the pressure and bulging - and could be left alone, but I think once they get in there are eyeball it they are going to want to fix it - so it would seem better to go in with that plan so the surgeon can be prepared!!!
Probably one of the things causing you all these problems is you have a little bit move movement (slippage) in there, that is called spondylolithesis. You have mild movement, they grade it but even mild movement is probably what has really caused all that arthritic type growth in those levels. The spine is very smart and it works to try to stabilize itself.
Now that I saw all the detail the type problems you have are really not candidates for that micro surgery - so save your money and just go for that other opinion on the regular surgery. Based on everything I have been told and in my non medical opinion it looks like the ACDF is the one for you but still get those opinions! The other surgery I was offered was to deal with signnificant central canal stenosis which isn't on your hit list.
You asked about Vertex and I believe that instrumentation system is used for posterior surgeries. Your surgeon will best know based on the procedure, and your specific problems what is the best route to take.
Don't worry about loss of range of motion - I notice very little at all. Mostly looking straight up, chin to chest, and a little to my left. But nothing that inhibits my life!!
Let me know how the block goes. NP
Probably one of the things causing you all these problems is you have a little bit move movement (slippage) in there, that is called spondylolithesis. You have mild movement, they grade it but even mild movement is probably what has really caused all that arthritic type growth in those levels. The spine is very smart and it works to try to stabilize itself.
Now that I saw all the detail the type problems you have are really not candidates for that micro surgery - so save your money and just go for that other opinion on the regular surgery. Based on everything I have been told and in my non medical opinion it looks like the ACDF is the one for you but still get those opinions! The other surgery I was offered was to deal with signnificant central canal stenosis which isn't on your hit list.
You asked about Vertex and I believe that instrumentation system is used for posterior surgeries. Your surgeon will best know based on the procedure, and your specific problems what is the best route to take.
Don't worry about loss of range of motion - I notice very little at all. Mostly looking straight up, chin to chest, and a little to my left. But nothing that inhibits my life!!
Let me know how the block goes. NP
jshu43
04-03-2009, 10:09 AM
NP - Thanks so much for wading through all my medical mumbo/jumbo! It was so helpful to hear in layman's terms what means what. I keep going back and forth debating whether I should do this. I would prefer that all the surgeons were gung ho for my surgery.
I think if I have the diagnostic injections then we can tell exactly were the pain is coming from - that will help. I keep wondering if somehow my muscles are programmed now to pull and be out of sync or that the nerves are messed up and I have some sort of neuralgia that is not fixable. Maybe I need to accept that surgery will not fix what is causing the most pain. My PM doc though said he thought the pain was originating in my cervical area and that he wouldn't treat the muscle or nerve pain until I addressed the cervical area.
Obviously, I don't really know what I'm talking about - which is why your post was SO helpful! I have an appointment in a week and a half for the other neuro and a week after that with an ortho - I think those visits hopefully will bring more clarity. The last surgeon wanted me to go for the diagnostic injections, but I talked with the office of the surgeon I am to see and I get the opinion that they have their own diagnostic doctor they would prefer for me to see. It's a bit of a quandary as I don't know which one yet I want to use. So I guess I will put off the diagnostic stuff until I go for the next appt. Gee, this is going to take months at this rate! I'll report back after I visit the next doctor - hopefully he will bring clarity to the situation.
I think if I have the diagnostic injections then we can tell exactly were the pain is coming from - that will help. I keep wondering if somehow my muscles are programmed now to pull and be out of sync or that the nerves are messed up and I have some sort of neuralgia that is not fixable. Maybe I need to accept that surgery will not fix what is causing the most pain. My PM doc though said he thought the pain was originating in my cervical area and that he wouldn't treat the muscle or nerve pain until I addressed the cervical area.
Obviously, I don't really know what I'm talking about - which is why your post was SO helpful! I have an appointment in a week and a half for the other neuro and a week after that with an ortho - I think those visits hopefully will bring more clarity. The last surgeon wanted me to go for the diagnostic injections, but I talked with the office of the surgeon I am to see and I get the opinion that they have their own diagnostic doctor they would prefer for me to see. It's a bit of a quandary as I don't know which one yet I want to use. So I guess I will put off the diagnostic stuff until I go for the next appt. Gee, this is going to take months at this rate! I'll report back after I visit the next doctor - hopefully he will bring clarity to the situation.
jshu43
04-15-2009, 10:41 AM
NP - I wanted to give you an update on my latest doctor visit. I went to a 3rd neurosurgeon as my cardiologist recommended me going. I'm not sure what his problem was, but I don't think he was happy that I had gone to other surgeons. He told me that I should walk an hour a day and I would be fine. Pretty surprising as I have one surgeon who says that I have no chance of any relief without surgery, one surgeon who says he wants me to do the diagnostic steroid injections to see if we can pinpoint exactly the areas that are causing the most problems, and one surgeon who said walk an hour a day. Besides the fact that I have Chronic Fatigue Syndrome and almost any exercise will put me in bed with fever and exhaustion so much that I can barely get up to go the the bathroom - I'm not sure how walking will effect my stenosis, etc in my neck. I told the surgeon that I was surprised that walking would help my neck and he told me that I could keep going to doctors and I would find someone to operate on me. That was so frustrating as I already had a surgeon who wanted to operate and another who was investigating it further. I went to him because I really wanted to be sure before I had surgery. But this doctor didn't want to hear anything and just walked out the door.
Well, it definitely has made me reconsider surgery, but it's hard to totally trust this guy's opinion when he was such a jerk. I am planning on going ahead with the diagnostic steroid injections and maybe I will get further info. But what is disheartening is that fact that I am disabled by the pain in my neck and the thought that I might actually have a life was very exciting. I had talked to my internist about it and she told me that several of her patients had had this surgery and did really well. She said that the constant severe pain that I experience every day effects my immune system and if I was able to relief the pain, I might also experience some relief in the Chronic Fatigue. My Pain Management doctor said that the pain I have is from my bones and he doesn't want to treat the muscle spasms and electrical current stuff until I take care of my bones.
I had an appointment tomorrow with an orthopedic surgeon because I had from others on the board that I should include one in getting opinions. He looked like he might be good as he has invented devices for fusion and specializes in helping those with botched fusion operations. But at this point, I just think I should cancel it. I'm not wanting to have surgery if it doesn't look like it will help.
Do you know how walking can help my neck? I know it would improve my overall health, and even perhaps help my low back, but I'm having a hard time understanding how the degeneration in my neck can be helped with walking.
Well, it definitely has made me reconsider surgery, but it's hard to totally trust this guy's opinion when he was such a jerk. I am planning on going ahead with the diagnostic steroid injections and maybe I will get further info. But what is disheartening is that fact that I am disabled by the pain in my neck and the thought that I might actually have a life was very exciting. I had talked to my internist about it and she told me that several of her patients had had this surgery and did really well. She said that the constant severe pain that I experience every day effects my immune system and if I was able to relief the pain, I might also experience some relief in the Chronic Fatigue. My Pain Management doctor said that the pain I have is from my bones and he doesn't want to treat the muscle spasms and electrical current stuff until I take care of my bones.
I had an appointment tomorrow with an orthopedic surgeon because I had from others on the board that I should include one in getting opinions. He looked like he might be good as he has invented devices for fusion and specializes in helping those with botched fusion operations. But at this point, I just think I should cancel it. I'm not wanting to have surgery if it doesn't look like it will help.
Do you know how walking can help my neck? I know it would improve my overall health, and even perhaps help my low back, but I'm having a hard time understanding how the degeneration in my neck can be helped with walking.
neckpatient
04-16-2009, 01:45 AM
Thanks for posting the update. WHen I read all your posts in the very beginning I was kind of struck by the fact that you had been dealing with this for 20+ years. In my mind it kind of made me wonder if any surgery is going to take your pain away - your body has been that way for so long!
I am wondering if some of the doctors really feel the same way. I also see you have some other generalized issues like Chronic Fatique and bone density*?* since we are not doctors and don't know everything about your situation, it could be they are encouraging you to get more exercise to address your skeletal pain and issues and get in better condition. Personally walking only makes my neck and arms and back hurt more, but walking has so many other benefits and remember you also must have some bone issues because you are taking Reclast. You need that weight bearing exercise.
As I have said to you before, I believe if it were me I would work with the doctor that wants to do the diagnositic tests. You can gain a lot of information from these tests that can tell the doctors more about your case. Physical exam is only one piece, MRI doesn't always show everything either, so getting diagnostic blocks and EMG's if ordered or other tests can give more pieces to the puzzle. Any doctor that doesn't want to take the time for diagnostic studies in my mind falls in one of two categories a) wants to do all the obvious surgeries, or b) might be doing unnecessary surgeries. I know United Healthcare actually rates surgeons based on how well they use diagnostic studies prior to surgery.
You also need to remember you can go to 10 different doctors and they might all have a different opinion. Although I think it would be common by the time you get to 5 opinions that two of them would actually agree.
I think I would actually go see the orthopedic surgeon because you have not seen one at all. Also it would seem she might have an opinion based on your other issues that would be unique.
P>S> doctors do get kind of insulted when you tell them they are 3rd and above opinions - I would just say looking for a 2nd opinon and not tell them what the other doctor said either.
Other than being bound by how much money you want to spend on this, it is perfectly within your right to seek a couple different opinions to help you make the best possible medical decision for yourself, afterall it is YOU that is the one living in that poor body and trying to live a full life!
I am wondering if some of the doctors really feel the same way. I also see you have some other generalized issues like Chronic Fatique and bone density*?* since we are not doctors and don't know everything about your situation, it could be they are encouraging you to get more exercise to address your skeletal pain and issues and get in better condition. Personally walking only makes my neck and arms and back hurt more, but walking has so many other benefits and remember you also must have some bone issues because you are taking Reclast. You need that weight bearing exercise.
As I have said to you before, I believe if it were me I would work with the doctor that wants to do the diagnositic tests. You can gain a lot of information from these tests that can tell the doctors more about your case. Physical exam is only one piece, MRI doesn't always show everything either, so getting diagnostic blocks and EMG's if ordered or other tests can give more pieces to the puzzle. Any doctor that doesn't want to take the time for diagnostic studies in my mind falls in one of two categories a) wants to do all the obvious surgeries, or b) might be doing unnecessary surgeries. I know United Healthcare actually rates surgeons based on how well they use diagnostic studies prior to surgery.
You also need to remember you can go to 10 different doctors and they might all have a different opinion. Although I think it would be common by the time you get to 5 opinions that two of them would actually agree.
I think I would actually go see the orthopedic surgeon because you have not seen one at all. Also it would seem she might have an opinion based on your other issues that would be unique.
P>S> doctors do get kind of insulted when you tell them they are 3rd and above opinions - I would just say looking for a 2nd opinon and not tell them what the other doctor said either.
Other than being bound by how much money you want to spend on this, it is perfectly within your right to seek a couple different opinions to help you make the best possible medical decision for yourself, afterall it is YOU that is the one living in that poor body and trying to live a full life!