Reasons for surgery: pain vs tissue damage?

[Katie]

I just got a rejection letter from one of Ontario's finest spine surgeons (yes, that is sarcasm)

He is one of several I have contacted lately, trying to get someone who says I need surgery on three herniated lumbar discs and two cervical.

While he agrees that I probably need surgery on my cervical levels, he says that "multilevel disc degeneration is not something that I would consider for surgery or consider urgent."

This is not the first time I have been told that pain is not a reason for surgery. That everyone must simply live with it, or try more conservative measures (which I and most other people have done).

Is this a common comment from surgeons throughout our world?

[Justin]

Let me get this straight, you were rejected from surgery?!?! You should tell your surgeon it's not so much the pain, as it is the possibility of quadriplegia as per Dr. Bitan.

Is this ("multilevel disc degeneration is not something that I would consider for surgery or consider urgent.") a common comment from surgeons throughout our world?

I think this is actually a very common belief from the majority of surgeons. The multilevel surgeries that I believe surgeons perform as "standard of care" are usually traumatic spine injuries that necessitate multilevel correct and patients with scolosis where surgery is indicated across multiple levels (so not degenerative per se).

I believe that disc degeneration, especially multilevel, is treated conservatively for the most part; however, nothing is set in stone. I'm sure surgeons recommend surgery at multiple levels depending on the level of degeneration and the clinical decision making process that goes into each individual case.

However, your case is unique in that it has been well documented that you could very well face quadriplegia if surgical intervention is pursued in the very near future.

In all honesty, I do know there are a significant amount of surgeons that view multilevel surgeries like the ones that Dr. Bertagnoli performs day in and day out, as "crazy" or, even, pushing the envelope. (Personally, my multilevel surgery with Dr. Bertagnoli with an "unknown" device in 2003 saved my life--I was told by multiple stateside surgeons it was going to be an inevitable failure--guess what? I went from bedridden to pain-free for 5 years (until an unrelated issue presented in my spine). I can't imagine where I would be right now if I would have undergone the 2-level fusion that was recommended to me at the age of 23. I'm saying all of this because at the end of the day you will get the care you *need* Katie.)

I think some of this has to do with 1) the surgeons training and 2) if the surgeon is a "new" or "old" school doctor. Even though the fundamentals of spine surgery have not changed, I think the way certain pathologies were treated / viewed in the past is undergoing an overhaul about what type(s) of intervention are necessary and when the intervention should be pursued. I believe this results as the next generation of surgeons & basic scientists are looking at "old" problems in new ways, which inherently changes interventions and treatment options to a certain extent for spine patients. The knowledge we continue to acquire and the new technological advances in medicine are also at play here. Sorry for the ... I'll shut up now.

[KBear]

That's absurd. I hope that you still have other options for getting them to pay for your surgery.

[Katie]

Please don't EVER stop talking

No, a bit of confusion on this. The doctor recommended that I be referred to a local neurosurgeon for assessment regarding possible cervical myelopathy, in a 'timely manner'.

So he isn't totally disputing Dr. Bitan's diagnosis, just surgery for the lumbar levels. He states that he would not give me a consult as there are more than enough surgeons in my area who could help me. Reeaaaaaaally now? Since there are absolutely none who do ADR here, I'm not sure who he is talking about, unless he wants me to have two levels of fusion instead. Which is probably what he is implying.

He also says that he does not do ADR at all, which goes against all the information I have gathered over the past year and a half. Good thing is, he says he is too busy to see me. (I need this to have the insurance pay for out-of-country surgery.) Bad thing...he says I don't need surgery in the lumbar for 'just pain', which will completely scuttle me as far as insurance goes. They are hoping someone will say that, so they can deny my application. Oh well, three more to go. I put out a number of requests for consults, and this is the first reply. Lets wait and see what the others say......

[Dave]

Katie,

Keep looking forward. 1 numb skull is not the end. As you said you have 3 more requests out there.

My surgeon based my surgery on the pain and numbness I was experiencing. I had lost nearly 75% disc height at two levels, which was pinching the nerves off. DDD does not get better, just keeps progressing.

Hang in there, we are here to support you.

[cavalier]

Some of the doc's i saw would not do any surgery for pain -no matter how long or bad it was - ONLY if nerve compression occurs would they operate - mostly like Justin said more accidents or sometimes salvage cases due to compression also not optimum to be in either. One of "the best" said go back to PT I had been in PT at 7 different Centers over 10 yr's due to moving around is why. 2 mo's after seeing him - I started to fall due consistently within 2 min's of standing if I d/n grab onto something I wondered you mean he could not see that - i had Severe stenosis by the MRI report. The nerve compression from the severe stenosis was finally that bad - the doc's staff didn't feel I needed to be seen by him again as he had just seen me so it c/n possibly be. He didn't know this but that decision should not have been made by his office if this is true. I then got opinions i was too bad from some they d/n want to work on me as i was too far gone -

There is a fine line & i get that they often dont want to start playing with something & make you either worse or cause a instablity to the spine - but besides the quality of life - there is also when is it apparent this is not going away and letting it go too long what so you can then be a borderline case I dunno somewhere in the middle would be my hope for them to consider balance to their thinking for some.

I have heard the same for my neck now for that most wont operate unless arm issues well I have arm issues so should be a slam dunk right - problem is then one doc wanted to blame it on something else & so even when you do have nerve compression - it still can get shifted to something else as causing this. To me that is a doc being too conservative or something - but to have a wrong surgery is a bad thing too in pushing it off on something else.

I am sorry that you got turned away, but the ONLY way i could look at that & deal with it was obviously for whatever reason that was not the doc to help me no matter how great their rep. is. I just prayed for the one who I was supposed to have. Dissapointing no doubt, but I just told myself to try to shake it off & forget about them & try to get back up & try again with someone else is all I can say. Just try to once again do your homework & be sure the doc is good enough to work on you. It is wearing and sometimes i feel some doc's are not good listeners they ask you a question but only hear the 1st few words but not the last of the sentence at times. The better listeners seem to be the ones I tend to gravitate towards.
I have to feel they GET it & then I feel what they have to offer - is based on their knowledge but with good understanding of the situation.
Best - Jill

[KBear]

Well said Jill.

[Katie]

Thanks for all of your feedback.

Don't get me wrong...I am not disappointed that I will not see this surgeon. He did me a favour by saying that he is too busy to even look at me. While I have a consult with a surgeon in another province next week who most likely will do surgery on me, at least with the cervical levels, I would really, really like to be able to go before the Appeal Board and win this insurance fight to go to Dr. Bitan or Germany.

I have fought for this right for almost two years, as a full time job. Getting fixed is one thing. Winning this case and opening the door for every other spine patient in this province is quite another. No one, not one single person suffering here has been funded for out-of-country surgery by our insurance program, and that is wrong.

People are going bankrupt and selling their soul to get relief from mind numbing pain, and all the government is doing is putting up roadblocks. So if I can win this appeal, I will set a precedent that should knock down some of those.

So bring on those other letters of rejection..it will be one step closer to get out of country approval. ;-)

[Fuzzy]

Fo years I got rejected from surgery because I "only" had pain and nerve compression could not be "proved" meaning the picture didn't clearly show it. But i had more then pain and I told them. The germans told me one should diagnose the patient without the picture and than use that to prove what one already knows. This strategy worked 100% for me as the neurologist in Gemany knew exactly what level in my neck to look at even before there was an MRI.

In the USA they didn't try to bother to corelate all the symptoms. The most obvious one PAIN, well you live with that. get a wheel chair, take pills, stay home, PT, stop working, you dn't want multilevel fusion, adr, what is that? just live with it.

Is that what medicine is for?

[Katie]

Apparently so, fuzzy. I can't believe that this doctor not only is questioning Dr. Bitan's diagnosis, but saying that he does not do ADR at all. The provincial medical office gave his name as one who does ADR, as well as his name on ADR conference sites, so why is he saying that? Weird reply.