How Much Imput Should the Patient be Allowed to Have in His Treatment Plan?

**Katie** · 10-31-2009, 12:17 PM

Should we, the patients, have a say in big decisions on how the surgeons do their work?

Let's say that I am uneasy with more than a two level ADR surgery, that I would rather have one level with fusion then two ADR on top in a three level surgery. But the doctor wants to put in three ADR, that he doesn't believe that it would cause any instability. Should we bow to his greater knowledge and experience or go with our gut feeling?

This is especially important if the patient doesn't have many options as far as the surgery goes, say the Insurance only covers this one surgeon or something similar. Would you stick by your principles and try to find a surgeon who will work with you, or ???

With all the talk lately about multi-level disc surgery and the possibility of instability, this question is rolling around in my head. The hospital I was considering does not seem to worry about those issues, so do I just grin and bear it?

**Gilbert P** · 10-31-2009, 12:33 PM

Hi Katie

I would have the Surgen preform the surgery I requested, If not able to do because of the out come, I may find another or get another opinion.

It is your spine and you should be comfortable on your procedure this is a one time deal.

God Bless

Gil

**KBear** · 11-01-2009, 01:19 AM

Katie,
I would not do a surgery that I was not 100% comfortable with, not sure about or didn't feel was the right kind for me. I say if you only want 2 levels, regardless of your reasoning, then the surgeon needs to respect that and only do that. I would not be pushed into a surgery that I thought could make it worse or cause future problems. It's your spine, you only get 1 shot at this and you don't want to regret your decision. You need to go into it knowing that you did all your research, you picked the best surgery and surgeon you could, with the knowledge that you had. That way, regardless of the outcome, you know you did the best you could do.

**Cindylou** · 11-01-2009, 02:24 AM

I think there is a fine line here. I think it also depends on your relationship with your surgeon. For me personally, I look at it more from the perspective of I am not the doctor here. I am the layperson who has done research. I have had really good docs whose expertise I was more than willing to put my trust in. I'm probably more old school that way. Certainly, I wouldn't have a surgery I wasn't comfortable with, but I don't pretend to know everything either. That's why they're the doctors, and I'm not.

**Katie** · 11-01-2009, 08:04 AM

Cindylou, I think I'm more in your ballpark here. No matter how much research I've done, the doctor still has had much more training and experience than I.

Having said that, there are very few I've met whose opinion I respect so far. Dr. Bitan is one, but his treatment plan was also limited by the FDA regulations in the US in regards to multi-level ADR. He was the first one to suggest fusion along with ADR, a hybrid, and his explanation made sense. But what if he worked in Europe (or Canada even) where he was free to do multi-level? Would he then have recommended having two or three levels of ADR instead of just one? Maybe because he worked in NY, I was being 'forced' to have a single level, even though a multi-level would be better. Know what I mean? That his hybrid method made sense because he had to make it work, and he gave me very good explanations to back it up? Not saying he is wrong at all, just maybe his argument for it may have been different in other circumstances.

Either way, I really trusted him more than any other I have met, so would have went with him anyway if given the choice....just gut feelings.

None of the surgeons here in Ontario have earned my respect, and my gut feeling has said they have all been wrong so far. That I do not simply have carpal tunnel

That ADR is not simply some weird procedure the Germans are using to make money (honestly, that was one of the arguments made against them

)

I question everything, but in doing so, am I putting myself at risk and driving myself crazy?

Hypothetically, If my only chance at getting the M6 meant that I would have to accept a three level ADR in the lumbar when my gut says that two levels plus a fusion in the L5/S1 is better, do I take a chance and ignore my gut? If the doctor involved thought that a three level was better than a fusion, how can I say that my gut says no??

I've read evidence backing up both methods...

**Cindylou** · 11-01-2009, 10:30 AM

Well, the bottom line is, Katie, even the doctors are making their best, educated guess. They don't know for sure. Medicine is not an exact science. How many times have we heard that before? Too many probably, but it's true, nonetheless. So, yes, I think you can drive yourself batty after awhile. Every single one of these operations in question has inherent risks. Of course you know that. Perhaps you should ask Dr. Bitan if FDA were not an issue, or if you were his mother or wife or sister, what advice would he be giving them right now, if their spine looked exactly like yours? I always like that question. You definitely need to go with the surgeon you trust and respect the most.

**Greg** · 11-01-2009, 11:07 AM

Originally Posted by Cindylou

Well, the bottom line is, Katie, even the doctors are making their best, educated guess. They don't know for sure. Medicine is not an exact science. How many times have we heard that before? Too many probably, but it's true, nonetheless. So, yes, I think you can drive yourself batty after awhile. Every single one of these operations in question has inherent risks. Of course you know that. Perhaps you should ask Dr. Bitan if FDA were not an issue, or if you were his mother or wife or sister, what advice would he be giving them right now, if their spine looked exactly like yours? I always like that question. You definitely need to go with the surgeon you trust and respect the most.

I wanted to add my 2 cents to your concerns but Cindylou took the words out of my mouth

. What would he do if this was his spine or that of his mother? That would be my question.

**dalhousie** · 11-01-2009, 12:19 PM

That's a question I've asked pre op. It's your decision at the end of the day but that question puts a perspective on things & has helped me to decide.

**Nairek** · 11-02-2009, 08:37 PM

Katie,

When I was denied for ADR surgery, Dr. Bitan tried to get it approved through my insurance. When my insurance company still denied it, I really didn't feel like going through the whole appeals process again & wait months for an answer. I might have won if I had persued it.

Dr. Bitan assured me that having a fusion at L5/S1 was not a bad thing. He explained that there wouldn't be much loss in movement at that level & that I should not be "hung up" on have ADR as fusion would work well for me.

I put my trust & life into his hands. Both my husband and I are glad that I did. I am happy with my results. While I am not totally pain free, I would say that I am about 85% pain free. I haven't had to take pain meds in months.

If your gut is telling you that you are not comfortable with the options that you are being offered, then perhaps you should consider other options. I second guessed myself many times about the fusion, but I knew that I ultimately made the right decision.

I'm not sure if you are aware of this, but Dr. Bitan is currently enrolling subjects in a non-sponsored research survey for patients diagnosed with two or three-level degenerative disc disease. Bitan MD - Clinical Trials: Combination Of Lumbar Spinal Fusion And Artificial Disc Replacement (Hybrid Constructs) For Treatment Of Multilevel Lumbar Disc Disease. Maybe you can see if you qualify.

**Katie** · 11-02-2009, 11:40 PM

Oh Boy. Thanks so very much for this information. I contacted his office right after learning of my metal allergies, but was told he was going away to a conference and didn't get a reply yet. I was trying to ask if he knew of alternatives to the disc that I was supposed to get here in Canada.

Well, he certainly knows my case, so I guess I better call Tom (his assistant) tomorrow and see what's up. I would be more than happy to travel down to the Big Apple every few months for check-ups if it meant I could get in a trial with him. I really truly trust him, but just wondered about the FDA regulations a bit and how it affected his decisions.

This would be the absolute best thing for me, to have my favourite surgeon operate on me, with minimal cost. Thanks again for the link.

The only question would be whether he can find a disc that I can use. I have heard that the Bryan disc is made of Titanium as well, but can't get through to the company HQ to see what the percentages are. I know that Dr. Bitan often used the Charite disc.

What did he use with you (hardware wise)? Thanks for the feedback about your experience with him. I'm very glad it is so positive.