Fusion or no? Advice please.

[Maddie]

I just met with a Neurologist, the first doctor who has taken the time to thoroughly examine me, and he said from the start that he does not believe in disc replacement surgery.

I have problems with L3/4, 4/5 and L5/S1...herniation, bone spurs and stenosis, and a bit of arthritis on the facets, but not bad. Lots of pain there, 8/10 daily.

He is much more interested in my neck however. The C4/5 & 5/6 are badly herniated, and squashing my major blood vessel and my spinal cord almost in half, according to the MRI. He is sending me for another MRI on Wednesday, but is also talking about sending me to a NS for a bovine graft, hardware, and a brace for four months. I am not having anywhere near the pain in my neck as in my lumbar area. His feeling is that I will be having even more problems with bodly functions in the near future if I don't do something soon, that permanent damage has probably already happened. ( I have trouble swallowing, walking, elimination problems, etc)

I'm not keen to have fusion, to say the least. Most of the people I have met with them have had many problems down the line.

Any feedback or experiences to share?

[berry]

Hi Maddie

Have you had an opinion from a surgeon who believes in disc replacements?

I was told by local ortho and neurosurgeons that I was not a surgical candidate for any spinal surgery for my lumbar spine, just "too risky".
I had double lumbar TDR's and although I have gone on to develop ajacent segment degeneration 4+ years later. It seems the theory that TDR prevented the domino effect associated with fusions isn't so in my case but I still have no regrets as the alternative for me was pain management clinics.

I was offered fusion with cage by several surgeon for my cervical spine but had TDR again with great success. Time will tell if adjacent levels cause problems in my cervical spine in the future, I am hoping that as the loading is less there may not be any progression there. My cervical story, which has some interesting photos, is on the Uk site http://z6.invisionfree.com/adrsuppor...?showtopic=303

Its a tough decision. Only you can make it though. Let us know what the mri shows and whatever you decide to do I wish you well.

Kind regards

Lynda

[Maddie]

Hi Lynda,

Thanks so much for the quick reply.

I have only found one doctor who is keen on doing ADR, but he is on the other side of the country, a six hour flight away. He would have to do two or three surgeries to do both areas on me. I have sent him all my MRIs, CTs etc, but he hasn't seen me in person yet. Our province does not want to pay for this either (I've been trying to get out-of-country funding for a year). I am planning on going out for a consultation in the new year.

Can you tell me why the adjacent discs degenerated in the lumbar area on you? Did the doctors offer any explanation? Do you know if that has happened often with others?

While fusion does not appeal to me at all, with the long time needed to be spent in a brace, etc., if it is a great solution, I will go for it. I just haven't heard very many success stories compared to ADR. How did you find these doctors who will do ADR with you? It takes up to a year to see a specialist after a referral up here. If you finally get in and find that the doctor doesn't want to discuss any options but one, it is very discouraging.

Any and all information is very welcome.

[berry]

Hi Maddie

I am in the Uk and it is difficult to find adr surgeons here too, they are few and far between although more and more are undertaking the cervical surgeries and are having great successes. I found my surgeon by pure luck he was recommended by a colleague (who was himself an orthopaedic surgeon) after I had been told I wasn't a surgical candidate at all by local ortho and neurosurgeons and I was packed off to the pain management teams.

The further degeneration has only recently been confirmed and there are more details in my surgical outcome postings on this forum. I just think I am in the unfortunate minority with the further degeneration but I was too shocked to ask sensible questions. I am hoping to arrange another consultation for clarification but as with your system it may take time.

Where about in Ontario are you? The reason I ask is because I have an uncle who lives in Bondhead and he knows a few people who have had lumbar disc replacement with great success. Maybe there are others nearer to you who you could consult. Perhaps you could search through the members list for people who live in Ontario and contact them too?

For some people, fusion really is the best option. Research and gather as much information you can and make the best choice for you. There are no guarantees with any surgery, unfortunately, but I do wish you well.

Best wishes

Lynda

[Terry]

I have two discs in my cervical arena and two in my lumbar arena. I believe in disc replacement as fusions have a high degree of adjacent segment disease. I would rather have a chance of living an athletic life which I had before ADR surgery.

I am living my dream currently at almost two years out. I would get another opinion.

Terry Newton

[annapurna]

To counter Terry's comment: if you're already experiencing difficulties with elimination, swallowing, and the like, you are dangerously near to the point where your options will be taken from you and you will get what is available to you in your immediate area on an emergency basis. If you do go to get a second opinion, you are no longer in a position where you can wait. Seeking an opinion from a doctor you can not immediately afford is worth thinking about now. Someone like Pro-spine or the doctor across the country from you might be willing to give you a quick opinion for a price right now rather than waiting and watching your options disappear.

To help in one other area, it could be that the cervical problems are contributing to some of your lumbar pain. Problems upstream, as it were, could intensify your lumbar pain and lead you to think that your lumbar situation is worse than it is. Don't know if that's true in your case but it does happen.

[soljagirl]

Completely agree that the cervical compounds the lumbar. I have virtually the same problem.

I believe the spinal cord is not sensitive to pain. However the spasms that it triggers downstream do compress the lumbar spine, causing congestion and nerve impingement. My neuro once told me that you could have complete loss of bladder function and not feel any pain at all. The spinal cord has a much broader range of impact and its is often overlooked by doctors. I think its even tougher with women, because drs chock the bladder dysfunction up to childbearing and other symptoms up to anxiety/depression/fybromyalgia.

So in my own compounded problem, my neurologist agreed that the cervical should have been done first, before the lumbar. I've read several stories here where back pain has gotten better after the neck surgery.

[Maddie]

Thank you all for your replies. I have heard varying stories about this, whether the lumbar pain can be a referred pain from the cervical area. The latest doctor who wants to do fusion has suggested that, but others have said no.

Annapurna, this is exactly where I am. I am scared silly to wait much longer, but at the same time I don't want to rush out and do the 'quick fix' that will come back to bite me later.

Does anyone know why it is that I have so much pain in the lumbar, and so little in my neck? From looking at the MRI, I should barely be able to move anything above my shoulders, but the only pain I have is when I try to look up, or side to side, basically when I move much. But with my lower back, it hurts all the time, and much more when I do much activity. Even lying down does not take it away, with lots of morphine on board. Is it common to have a worse 'looking' area have much less pain?

[Maddie]

Berry, I live just southwest of Ottawa. I would travel just about anywhere if I could find a good doctor who was knowledgeable about ADR.

I will be traveling to Toronto towards the end of November for a formal hearing with the Provincial Appeal Board and OHIP, the province's medical insurance group. I could piggyback another appointment at the same time, if I could find someone else.

Sorry, I have no idea where Bondhead is.

[berry]

Hi Maddie

Bondhead is about 65 km north of Toronto, (I was fortunate enough to visit in May). I imagine the folks my relatives know had their surgeries in Toronto but am not certain, would you like me to try and find out the names of the surgeons/hospitals?

Perhaps other members on your side of the pond maybe able to provide information on surgeons nearer to Ottowa? Perhaps you could do another post as a question so it will be spotted? Could the Ontario Ministry of Health provide any information regarding ADR surgeons?

Re the MRI's, from what I've researched, it is not unusual to have dreadful looking mri scans and mild symptoms and on the other the hand one can have severe symptoms with reasonable looking scans...it just doesn't match sometimes.

Do you have any balance problems? I only ask because I had vertigo and stumbling episodes prior to my cervical disc replacements but have had none since.

Good luck with all of this, hope you can find a good adr surgeon soon.

Lynda