It’s been a while that I have posted, but things are still so crappy! I am 8 mos. Post op after my 2nd surgery, which was in May of '07, and had my first surgery 9 mos. before that. The 2nd surgery was needed, because my C6/7 basically collapsed after they took C5/6 out.
I had an MRI about 2 weeks ago, which said:
C3/4 Mild degenerative changes. Small right foraminal disc herniation, with associated right foraminal stenosis.
C4/5 Disc space narrowing and degeneration. Grade 1 diffusely bulging disc, with mild right greater than left foraminal stenosis.
C5/6 Post operative changes are seen.
C6/7 Post operative changes are noted at this level, with anterior plate and screw fixation.
I just had a flexion and extension X-Ray, and it does show that the C5/6 has fused completely, but C6/7 has not fused at all…., and it has been 8 mos. Sometimes I get these sharp shooting pains that go up in the back of my skull. I can no longer see my original neurosurgeon, because I no longer have that insurance, due to working only part time, but all he wants to do is watch it, and does not want to refer me to a new neuro.
I called around to different neuro’s, and they said that they will not take someone else’s post op patient, unless he refers me to them????
I still have a lot of nerve pain, and permanent nerve damage, facet disease, and so on and so on….., but thanks to Cymbalta I am still sane! No one at works understands anymore, and they make little remarks here and there…uggghhh I am so tired of that. I am doing my dangest to work every day, even if it is 3 hours a day, and my husband thinks that I should be going back to full-time. Am I just being a baby? Should I be working more by now? I can’t sleep at night, and it always feels like my neck is breaking in the middle of the night. I constantly have burning, and shooting pain down both arms, and into both hands, and my ulnar nerves (at the elbow) are so inflamed that I can barely use my arms.
Hi Ducthgirl, I have to run right now, but wanted to offer you some support and tell you to keep your chin up. Sounds like you are working hard to get well. Sometimes from the outside we can look ok and still be really miserable, so pay no attention to snide comments from people. Until one has these types of conditions there is no way for them to understand the depth of the pain, the disruption it can cause and the things we go through. Make sure your employer has the information they need to support you and as for co-workers just do your best.
After my second surgery, it took a very long time to fuse, and then even at around 15 months, I still had some holes or porousity in my fusion. The more months that went by the more stable my pain got. So maybe you need more time and the same will happen for you. I too had back to back cervical surgeries in about same amount of months as you and it was a lot to go through. the second was no cake walk.
THey say that there are many false positives from x-ray reads on fusion findings for many people. That lots of people who are told they are fused are not really fused - so you may not really be that far from norm.
gotta run, but will check later tonight and see what else I can offer.
If you have read my posts, you can see that I am basically in the same boat as you. I had a two level fusion at the same levels. I am also experiencing the numbness in the hands and the shooting pain up into the back of my skull. The pain into my skull may be from the level above the fusion, but the hand symptoms sound like they are from C6/7, which now shows motion on a bone scan and bone remodeling. Have they talked about doing a bone scan? The newer ones have the CT images after the scan and they produce these incredible three dimensional images. The technician showed me the results. Your upper body rotates in a circle on the screen with the hot spots clearly visible.
I meet with my neurosurgeon next week. He was happy to take my case and said that many surgeons have the opinion that they fixed you and won't accept any complications down the road. I hope that you can find a new surgeon. Did you ask your pain management doctor for a referral? They seem to know who is best in complicated situations.
I'm SO sorry about you're going through and it certainly does sound like your doing your best to work while dealing with the reality of the pain you're in and the nerve issues your facing. I can totally relate. I've only had one surgery C5-C7 and now I feel bad for complaining about my situation. I'm six months post fusion and am not fusing (basically my most recent x-rays look the same as my x-rays from three months ago).
I do know how frustrating this is and I know I almost jumped out of my skin when my surgeon mentioned ANOTHER surgery. I just don't know if I can go through ANOTHER surgery.
I wish there was something I could suggest, I'm seeking answers myself and just feel like I'm no better off then prior to surgery (which is indeed really depressing).
It seems at this point you deserve another surgeon to look at your situation and it's too bad that it's so difficult to get someone to take your case. It just seems wrong. Maybe will have to ask your surgeon for a referral. It seems only right that someone else looks at the case, with all you're going through.
Please keep us posted on how you're doing. You're in my thoughts.
Hi Ducthgirl, I have to run right now, but wanted to offer you some support and tell you to keep your chin up. Sounds like you are working hard to get well.
Hi neckpatient, thanks for your reply. I am so thankful that this board is here, otherwise I would feel so alone.. It gives me a lot of hope that it took you longer to fuse too, because maybe I will still fuse then too! How are you doing now? Are you working full/part time?
If you have read my posts, you can see that I am basically in the same boat as you. I had a two level fusion at the same levels.
Hi Holly, the bone scan sounds like a pretty good idea to me. My pain doc wants me to have a nerve Rhizotomy, and I've already had the diagnostic test for that. I'm willing to give it a try, but I am worried that if they kill the nerve on the side of my neck that I won't be able to tell if my disc's are getting worse, because that is one of the biggest pain signals for me. You are soooo right, about how so many surgeons think that now that they have done the surgery everything should be fixed, and anything that happens after that is not their problem! Thanks, I will ask my pain doc for a referral.
I'm SO sorry about you're going through and it certainly does sound like your doing your best to work while dealing with the reality of the pain you're in and the nerve issues your facing.
Please never ever feel bad about complaining when it comes to disc surgeries!! Every situation is different, but that doesn't mean that it is any less painful! I know what you mean about not sure that you can go through another surgery, but after experiencing the first surgery I think that you can handle almost anything. What's sad is that once you have these disc problems, all the procedures and pain management that you have to go through is not that fun, as if it isn't bad enough in the first place!
I think that part of my problem is that it's hard to think positive anymore, because of what happened after my first surgery. Also whenever I start to do a little better, and I exercise or just clean my bedroom for that matter I end up in an inflammation. I think that part of the reason that the surgeons are acting funny about taking on someone else's case is, because there is only a handful of neurosurgeons in Salt Lake.
Don't give up! I know that it takes approx. one year to mostly recuperate from a disc surgery, and once your nerves start healing it can be pretty uncomfortable/painful. It's like they have been asleep for quite a while, and now they are waking up, therefore the numbness and pain. I'm just worried about mine, because I have so many other things going on too.
Hang in there, and everyone here on this board is in my thoughts daily.
Hi Dutchgirl, checking back in. You asked if I am working - I am not. I did go back full time after my #1 - ACDF C4-6. 9 months after that surgery I started up with problems at other levels (destined to happen - I had lots of problems that we didn't fix - movement and congenital stenosis), after trying more conservative measures decided to have a revision at 17 months, adding another level to my prior fusion. It was after that surgery, when I went back to work that I started deteriorating again. Enough was enough, I went on leave and haven't returned. Once I stopped working, every month I stabilized more. I can't do the things I used to but I am better than last year, and better than prior surgeries. Pre surgeries I was basically functioning on max load of pain meds, neurontin and muscle relaxers and still around pain level 8 constant. I worked about 20 years of a really high stress, 12-14 hour day job, I can't go back to that world. I did stupid things before, during and after my surgeries (type A person). In the end I had to give up my career that I loved. That's why I stay around, to encourage people to ask questions, examine their stituations, and research options. There is a lot more information available now for a patient than 4 years ago.
There is nothing more important than your health, give yourself permission to take care of yourself. Be patient, I have hope that you will continue to improve.