What was your experience with patient referrals by Doctor?

[YB1125]

Update

I got a response from the website I just mentioned. One of the ambassadors called me and said she will get me in touch with a patient Ambassador that had same Surgery. I told her in details what I was looking for, why I contacted them and why I was unhappy with my Doctor's referrals. She said she didn't have in her data any Scoliosis Ambassadors who were my Doctor's patients. She said she will get me in touch with a good Ambassador who matches my criteria, she was very sweet and helpful. I even asked her to refer Doctors to me that do Xlif Surgeries.

Well, I did receive a phone call from an Ambassador a couple of hours later, a lady who had Xlif Surgery 9 months ago. She had a 16 degrees Scoliosis and had a surgery for 2 Herniated Discs. Her Scoliosis she said seemed to stay the same as one of her legs is longer than the other and it is a result of this. She did say her body did change after Xlif surgery as her spine was fused into place, her bones shifted into place and she stands straighter, her posture is better. She had a traditional Herniated Disc surgery 9 years ago and 9 months ago an Xlif one, she couldn't put enough words of how much better the Xlif Surgery results are, she was very happy with her choices and had a fast recovery.

My Doctor did not respond yet, neither his assistant.

I am still missing a piece of the puzzle, why no one get me in touch with scoliosis patients only. I don't want to hear about no other surgery condition involved, just a scoliosis fixation I think my requests are pretty clear..

I was planning the surgery mid June, I already put together all the 'logistics'. For now until I get answers I am still searching..

[rohrer01]

I got a response from the website I just mentioned. One of the ambassadors called me and said she will get me in touch with a patient Ambassador that had same Surgery. I told her in details what I was looking for, why I contacted them and why I was unhappy with my Doctor's referrals. She said she didn't have in her data any Scoliosis Ambassadors who were my Doctor's patients. She said she will get me in touch with a good Ambassador who matches my criteria, she was very sweet and helpful. I even asked her to refer Doctors to me that do Xlif Surgeries.

Well, I did receive a phone call from an Ambassador a couple of hours later, a lady who had Xlif Surgery 9 months ago. She had a 16 degrees Scoliosis and had a surgery for 2 Herniated Discs. Her Scoliosis she said seemed to stay the same as one of her legs is longer than the other and it is a result of this. She did say her body did change after Xlif surgery as her spine was fused into place, her bones shifted into place and she stands straighter, her posture is better. She had a traditional Herniated Disc surgery 9 years ago and 9 months ago an Xlif one, she couldn't put enough words of how much better the Xlif Surgery results are, she was very happy with her choices and had a fast recovery.

My Doctor did not respond yet, neither his assistant.

I am still missing a piece of the puzzle, why no one get me in touch with scoliosis patients only. I don't want to hear about no other surgery condition involved, just a scoliosis fixation I think my requests are pretty clear..

I was planning the surgery mid June, I already put together all the 'logistics'. For now until I get answers I am still searching..

First of all a 16* curve is barely scoliosis, so that is a moot point. Maybe you aren't getting the patient pool that you want because it doesn't exist. He may be a very good spine surgeon, but may also have zero experience with actually treating scoliosis. Most docs (some will) don't usually operate on 45* curves in adults unless there are other problems involved with the spine. Do you have another condition besides the scoliosis? Granted, a span of 4 vertebrae is a very tight 45*. I have a very high and tight curve of similar size and the scoliosis specialists won't touch it, yet, even though it's painful. You may want to get a second opinion before committing yourself to a surgery that big. I would look up the nearest SRS doctor. You can get to the SRS through this website and get a list of surgeons nearest your location. I wish you the best. Everyone here has told you RED FLAGS here. It's up to you whether you listen or not.

Take Care,
Rohrer01

[YB1125]

First of all a 16* curve is barely scoliosis, so that is a moot point. Maybe you aren't getting the patient pool that you want because it doesn't exist. He may be a very good spine surgeon, but may also have zero experience with actually treating scoliosis. Most docs (some will) don't usually operate on 45* curves in adults unless there are other problems involved with the spine. Do you have another condition besides the scoliosis? Granted, a span of 4 vertebrae is a very tight 45*. I have a very high and tight curve of similar size and the scoliosis specialists won't touch it, yet, even though it's painful. You may want to get a second opinion before committing yourself to a surgery that big. I would look up the nearest SRS doctor. You can get to the SRS through this website and get a list of surgeons nearest your location. I wish you the best. Everyone here has told you RED FLAGS here. It's up to you whether you listen or not.

Take Care,
Rohrer01

Thanks you for your good wishes Rohrer, All the best to you too. The Ambassador I spoke to was not my Doctor's patient, but a patient of the Xlif(minimally invasive) Surgery. I have met with a traditional surgeon and he wanted to fuse a lot more Vertebrates, I would say half of my back. He is a good Doctor, he is in town but I wanted a minimally invasive surgery and was willing to travel for it. I made the surgery decision myself over a year ago before I even met with any surgeons. Scoliosis is the only thing going on with my back.
I don't know what a tight curve means, As I was told Xlif does not require big fusions as most of the spine will straighten itself from the nature of the technic.

If I got paid for all the time I spent researching Scoliosis Treatments and surgeries I would be rich now lol*
I have no reason to wait any longer, I have been searching for a surgeon for over a year.. I want this behind me, there is nothing to wait for, it's either a yes or a no. I want to move on with my life, I don't want to think about my aching back everyday. My work is seasonal, I can only afford taking off work during 2 periods of the year, for insurance benefits summer is the ideal.

I am aware of the red flags and I am going to research more..

[rohrer01]

A tight curve is one that spans just a few vertebrae, rather than a whole bunch. I understand what you mean when you want to just get this behind you, as I feel the same way much of the time. But you have to realize that once this is done, there is no going back. If you choose the wrong doctor, you may very well end up worse than you are. Keep doing your research (and getting richer! lol) and find the best doctor to do the job. I'd hate to see you end up unnecessarily on the revision forum battling back pain and sciatica or worse for the rest of your life. This is serious business. Some of us may come across a little harsh and sorry if I do. But we are also here to look out for each other. There are some doctors that do fuse smaller curves for various reasons, including some SRS doctors. I would just make sure that whatever physician you choose, you make sure that he/she does more than just a couple of scoliosis surgeries a year. It should be how many per week. It's your back and you're the one who has to live with it just like the rest of us. I'm just "waiting" to get bad enough for surgery and trying to keep as active as I possibly can until that day arrives. So, in a sense, I do understand how you feel. Just please be careful.

Rohrer01

[Doodles]

I understand wanting to be done and move on also. But I would take Rohrer's warnings to heart. After reading your latest info, I felt pretty uneasy about your going into a surgery of this magnitude without a second opinion from an SRS doctor. Best to you and your decision. It's a tough one. Janet

[leahdragonfly]

I have met with a traditional surgeon and he wanted to fuse a lot more Vertebrates, I would say half of my back. He is a good Doctor, he is in town but I wanted a minimally invasive surgery and was willing to travel for it. I made the surgery decision myself over a year ago before I even met with any surgeons. Scoliosis is the only thing going on with my back. <snip>I was told Xlif does not require big fusions as most of the spine will straighten itself from the nature of the technic. <snip> I have no reason to wait any longer, I have been searching for a surgeon for over a year.. I want this behind me, there is nothing to wait for, it's either a yes or a no.

Dear YB,

I have been following your posts, and I guess I really don't understand WHY you want to have surgery so bad now. Your curve is borderline, not really an indicator for adult surgery if as you stated above, it is just the scoliosis that is the problem. And I think you are patently mistaken in counting on the XLIF to "naturally straighten" your spine. I know the idea of a lesser, minimally invasive surgery sounds very appealing, but there is a reason the other, more experienced scoliosis surgeon said you needed a longer fusion. I think you could potentially end up with a spine that is worse off than when you started. It is no picnic having any portion of the spine fused. It sets up other areas to take on more motion and thus more stress, and can lead to other problems. Fusion is not something to take lightly, to just do to get it behind you. I think you would be much better off trying regular physical exercise such as swimming or walking, and working with a PT if you have pain. Just running out and having an ill-advised XLIF will probably not be the last you have to think about your back, believe me. By the way, with scoliosis it is almost NEVER an urgent situation, a "now or never" kind of thing. Many people here have much worse curves than you and have put this surgery off for years or decades. You are still plenty young, there is absolutely no rush to do this right now. Most important is to be fully informed and pick the option that has the best chance of success, not just the option that sounds the easiest. Please consider this decision carefully.

Please accept my candor in the spirit that it is given, out of care and concern that you are rushing in to a bad decision that may not end up the way you hope it will, and could leave you worse off.

Best of luck,

[leahdragonfly]

BTW, the reason you have not received patients to contact who have scoliosis is almost certainly because this surgeon you are working with has little to no experience with scoliosis. That is a subspecialty within spine surgeons. A physician may be an excellent spine surgeon, but have little to no experience with scoliosis, which is the most complex type of spinal surgery. Scoliosis surgery is very very different from one or two level fusions for disc disease.

When I asked my doctor for patient referrals he was happy to give me several. I was given their phone numbers so I could contact them myself. My surgeon knew I was concerned about being able to return to work after my surgery, and he was very honest that occasionally a scoliosis patient is unable to return to work after surgery. One of the women whose number I got was a 31 y/o who was unable to perform her job after her surgery . My point is they were not just cherry-picked success stories. Your doctor is giving you a huge warning by not giving you referrals to other scoliosis patients. You would be wise to not ignore that fact.

[Pooka1]

It is very clear by now that the surgeon you selected is NOT a scoliosis surgeon. Your willingness to let him operate is alarming. You can find qualified surgeons to do minimally invasive fusion on the lumbar. You don't need to go to someone who does not know scoliosis and can't know whether what he is doing is correct.

For lumbar, you need someone who has done a million of these procedures. You need to have it done right the first time. We have a few testimonials about people now having to have salvage surgery and perhaps not even qualifying because they went with a non-specialist like you apparently are going with. They are screwed.

RUN AWAY! Find an expert who is with the Scoliosis research Society...

http://www.srs.org/find/

Be scared.

Good luck.

[Pooka1]

Pick one of these guys

http://beckersorthopedicandspine.com...g-on-scoliosis

Anand does minimally invasive lumbar fusions. Folks on the forum have consulted with him.

[Pooka1]

Here's another guy...

http://drlloydhey.blogspot.com/

[jrnyc]

there are treatments that can help with pain short of surgery...
i do not remember you mentionintg any that you have tried...??
i also do not remember reading where you live...
big cities usually have many surgeons with a lot of experience...it is pretty easy
to find an experienced scoli surgeon in a large city...
of course, there are many on forum who have had to travel a ways to do just that...

i hope you get at least 2 more opinions from top scoli surgeons before you make a decision...
i have my doubts about which surgeon would operate on a curve of 45 degrees,
without suggesting pain treatments first...
and even then, suggesting not doing anything right away....
i can very much sympathize, empathize with your pain, as i have severe spinal pain...
but the surgery is not ALWAYS the answer, is not always successful, and is completely permanent...
nothing i ever heard of naturally straightens the spine, before or after surgery...
i cannot imagine who gave you such misinformation on XLIF!!
i consulted with Dr Anand in LA, and he is a major believer in minimally invasive lumbar...
but he never ever said anything like that...nor would any surgeon who knows the procedure!

best of luck...
jess

[Pooka1]

Jess is right. Surgery is no guarantee to remove or even reduce pain though it is likely in many cases.

If your curve is 45* and there is no evidence for progression, I am not sure you will find an experienced scoliosis surgeon who would agree to operate until you have exhausted all conservative pain treatments as Jess mentioned.

Maybe that is why you have selected to a non-scoliosis specialist???

[LindaRacine]

It is very rare that XLIF surgery without a posterior spine fusion, can be utilized for correcting scoliosis.

[jrnyc]

yes....
it was suggested to me IN ADDITION to spinal fusion from posterior approach...
i have not heard of it used alone, and when i looked it up, the discussion said it
can not be used for low lumbar fusion, because side approach cannot be used below
a certain point in pelvis...
there are several discussions i read about XLIF, PLIF, ALIF, etc...

jess

[LindaRacine]

You may recall that we had a patient who did not require a PSF after her XLIF. Here's the post:

http://www.scoliosis.org/forum/showt...hlight=deviren