Spinal stenosis question...HELP

[carolnurse]

Hi...To anyone that has some information...HELP! I am 51 years old, have visited this forum in the past and gotten some helpful info. I have moderately severe to severe spinal stenosis. I do not have horrible pain, but I have been losing sensation in both arms and both legs.(numb foot for 6 months now). I went to see a highly regarded surgeon who wants me to have surgery urgently-as soon as possible. My MRI shows degeneration from c3-c6 and he wants to do a c3-c7 fusion. I also have bilateral severe foraminal stenosis at levels c3-c6. After he explained the urgency to me(I most likely have myelopathy), I was reading things online that urged against doing all these levels at one time. If anyone has any feedback, please respond. Thanx

[newcervie]

Carol -

I can't help you with the decision on fusing the neck from C3 to C7 or point you towards anything that talks about fusing C3 through C7 at once. I have severe stenosis at C5/6 and moderate stenosis at C3/4 and C6/7 so I can relate to your issues. I either have problems down the arms in the C5/6 distribution or my ulnar nerve is throwing an unwelcome party. Did the doctor mention anything about spinal cord impingement? Personally, I'd recommend getting several opinions but I know this takes time. If I'd listened to my NS 5 years ago, I'd already be fused at C5/6.

Regarding the foot, have they done an MRI of your lumbar spine to rule out any involvement from the lumbar spine?

[carolnurse]

No MRI of lumbar area. I asked about it and the surgeon said it wouldnt make much difference. My neck is really bad. I have very little left that isnt impinged on the spine. He also said he couldnt do less areas, because the spine is too unstable to manage a few at a time. I've had this problem for 30 years, suffered through bouts of radiculopathy and pain. It's odd that at this time I really dont have much pain, I just cant feel my one foot and I have lost most of my fine motor coordination in both hands. I've been reading alot of posts online at all kinds of websites and they scare me about this extensive surgery. He is a highly regarded surgeon, usually tries many other things before surgery, but didnt even give me an option and told me this needs to be done as soon as possible. I'm thinking about a second opinion, not sure if I have the time for that..?

[Big Joe]

It is hard not to be frightened of a surgery this major. However, you may be even worse without it, and in time you can lose the function permanently in your extremities if you do not get them fixed. If the nerves are compressed for too long they may not function again. I would encourage you to see about a second opinion if you are concerned and see if there is another process that may be better. You will need to take all your films and MRI, etc with you for your second opinion. The second opinion may well be the same, but at least you can feel confident there is no other viable option.

Will you have all your function restored as you did when you were 30? Probably not, but if you do nothing you will continue to lose function and the pain will come. It is just a matter of time. If you have the area repaired you may well get a very good result. Most people do. Like any other serious procedure, there are sometimes when things do not turn out the way we want. I am a poster boy for that. However, very often there is no chance without the surgery where you have a pretty good statistical prognosis with the surgery. Remember that many sites like this are highly populated with those of us who have not had the best of outcomes and problems continue. That is a minority of people who have these procedures though.

Will you be one of the majority? Probably. There are no guarantees, but I had rather take my chance of success than to not have any chance at all. You alone can make the decision for yourself. Be sure you have a surgeon that knows what he is doing, that it is being done in a facility that has experience and staff to understand and handle spinal issues, pray a lot, and do what you have to do. I wish you luck and you will be in my prayers.

[Mark N]

Carol, sorry you are facing this but I want to back up with what Big Joe is saying. You can go ahead with the surgeon you have now and set everything up while still getting a second opinion before the surgery. It does sound as if you will have to have the fusion though with the losses you already have. Good luck and everyone of us is different so even though some are worse off having C3-C7 fusion many others are better off with it. We just can't be sure how our surgeries will turn out. I have gone through 3 with no real problems but my continuing spinal issues from other levels have caused me to be totally disabled but my OSS told me that it would happen if my other levels got worse. If I was dealing with just the results of my surgeries I would be doing very good right now. Good luck.

[carolnurse]

thank you all

Thank you all for the advice and words of encouragement. I have talked with other surgeons and coworkers who told me if THIS surgeon says it is urgent then it is. I think that because I have had this problem for so many years, I've learned to adjust to it and put up with the problems it's caused. (diagnosed 30 years ago with the stenosis). The other professionals have told me since it is moderately severe to severe, this was a NECESSARY surgery. So, I have scheduled it to be in 2 weeks. I've also been told that since I am in good shape now, and no advanced signs, I should probably do well. I am at a top notch hospital in Pittsburgh, with a surgeon that is known across the country for brain and cervical spine surgeries. Again, thank you all, your info and words of encouragement have been INVALUABLE in some of my decisions. Will keep updated and hope for the best for all of you too :o

[carolnurse]

Joe, thank you.....you seem knowledgeable and intelligent in your response. I have been trying to ignore the obvious.......that I need this surgery before things get worse. This surgeon and another one told me that any risks of the surgery and better than the risks I am facing if no surgery. So, my decision is made.

[Big Joe]

Carolnurse... I just got home this afternoon from my surgery. It was quite an amazing process. I went to the hospital for surgery yesterday morning. 36 hours later I was on my way home. That was for an open surgery where they removed the hardware from the old fusion 13 years ago, decompressed the next level due to the stenosis, then fused those levels to the original with new hardware. They were done in about 1 1/2 hours and I was back in my room. My last surgery for fusion took 7 1/2 hours. When I awoke the pain was gone and I could use my legs. It was amazing. They had me up and walking in a couple hours after that. I started on a walker, then my cane, then without any aids. I went home today with the pain that was so horrendous gone. The only pain I have now is the surgical wounds which will take a bit to go away. However, I feel better than I have in a very long time and I am tall again, and my function is fully restored.

I was at a very special hospital with a very special surgical team in Nashville, Tn. I was very blessed to get this group to take care of me. God is good! Anyway, I don't know if you have had your surgery yet, but it can go very, very well and we can return to our life. It will take a good while for everything to heal up and I must be smart enough not to push myself harder than I should. However, I have a bright light at the end of the tunnel and I know my life has been restored. I can expect none the less for you. Keep going and see what comes!

[Mark N]

Big Joe, what great news to hear from you. I am so glad the surgery was so much shorter and you feel so good so soon afterward. You know you have had a great result when surgical pain is all you feel now and all your function have returned. It is amazing what a difference the right doctors can make. You are a great inspiration for Carol as it really helps to read the good news from our surgeries. I know that 15 years following my lumbar fusion it is still doing great so you and Carol have bright outlooks for the future.

[carolnurse]

I am soooooo happy to hear that things went well for you and hope that your recovery course continues on this path. My surgery is this Friday and I am feeling much calmer about it all. I have spoken to many other professionals and they assure me that I have chosen one of the best surgeons for this. And the nurses that take care of the post surgical multi levels have told me that all of their patients have done well afterwards. Again, I have been wondering about you Joe and am very happy to hear u are doing well !!!!!

[Melanie]

I just wanted to wish you good luck Carol. I will say a prayer for you that things go well. Perfect surgery, speedy recovery, good pain management and no complications!!!
I've never had neck surgery but I would imagine some tips are universal. Basically just get things you will need set up within easy reach as you won't be allowed to reach up probably, or maybe even bend down (not sure about cervies there). Stock up on easy to make and eat foods, I've heard cervies have some swallowing issues right after surgery so maybe soups and puddings??
Just remember to take and easy and follow the docs orders :)

[carolnurse]

surgery done

Surgery is over, I am one day post op and doing great. A little bit of sore throat and some pain at incision, but otherwise am doing very good. Thanx for the help all.

[Mark N]

Carol, it is good to see you on this side of surgery. Just remember you want to keep feeling great so don't over do it as it is easy to do when you feel so much better than before surgery.

[Big Joe]

Still praying for you. I think you will do amazingly well!

[carolnurse]

Joe

Thank you Joe, my prayers have been with you also. I have been reading all the posts and really look forward to seeing how everyone is doing. Keep up the good work and continue to pace yourself. I realize this is a long road, but now also realize it was necessary. I am allowed to drive this weekend and am hoping I am up to it. I'm taking baby steps and looking forward to ANYTHING I am allowed to do. My neighbors musta thought I was nuts yesterday because I just walked back and forth on my front porch for quite awhile since the sun was out!!