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YB1125
03-20-2012, 08:28 PM
I have been researching for a surgeon in a while. Till I came across one, I believe I found him through this forum. I was inquiring him for a while and I felt like he would be a good choice. He does not take my health insurance and the insurance deductions would be kind of crazy, wasn't sure if I could afford them. I was recommended to another Dr. at his office who does take my health insurance, 4 doctors run the office.

The connection between me and the doctor I was referred to was immediate, as far as personality and patience he seemed like he could be a good Doctor as he was listening to me and answering all my questions. We are still keeping in touch and he always replies to my emails.. his stuff are helpful too etc.
I asked him for some patient referrals, I gave him very basic specifications, I just wanted to talk to a couple of his patients who had similar experience to mine and hear about their experiences. This is a quote from my email to him about "Will you be able to get me in touch with a couple other patients who already went through exact same scoliosis surgery.." In a very timely manner I received 2 phone calls from 2 patients. I am a 29 years old female with scoliosis. The 2 referral were males in their 50th, both had work related injuries, one had slip disc and had his surgery in 2008. The other had Degeneration in his spine from work injury; he was one month pre surgery. Both were really nice guys and very helpful. Sounded like they were both sent to the doctor by insurance's request, as the doctor works with those type of claims. They both talked about the doctor's good manners and personality.
The surgery is an Xlif Technic, a minimally invasive surgery, which would be executed in a similar way in different spine conditions, so I could see why their experience could be valid, but still not scoliosis patients.

I was asking myself, why did I not get referrals to someone close to my age, a female and most of someone who had a scoliosis surgery and not another condition?
I just spoke to the doctor's assistant and asked to apply for surgery with health insurance, this may be delayed regardless due to other reasons, not sure. Than I thought it over and was asking myself, could it be that the doctor does not have a lot of scoliosis surgery experience? Could it be the reason I didn't get the right referrals? I know those patients were his personal requests and guidelines.
Now I am wondering what should I do??? It takes me forever to make decisions and once I made them it sucks going back to square one.. but I know my health is important..
My concern would be, having a surgery with a doctor who may not have the right scoliosis surgery experience, I don't know this as a fact, but my feelings go that way, he has been a surgeon for 7-8 years. 13 years with other practices total. I already asked his assistance for the right patient referrals, hopefully I will hear back from the right people. I am just trying to read between the lines, not making any claims. What was your experience with patient referrals? Did you always get the right ones?

Doodles
03-20-2012, 10:07 PM
I think your concern is very legitimate. I had conversations with several people from 2 different doctors I saw. They were all women and older like me and all had extensive fusions. They were very helpful conversations. Plus, Dr. Lenke who did mine had lots of info on his web site and testimonials. Honestly, if they had you talk to males with work-related injuries that required surgery for discs etc. --that's not even close! Did the doctor say how much he'd fuse on you, etc. etc. For this sort of surgery 7-8 years experience doesn't sound like near enough unless yours will be a very small area to fuse. Welcome to the forum by the way. I'm sure you'll get lots of info here. Janet

LSKOCH5
03-21-2012, 07:34 AM
Did you ask him how many scoliosis surgeries he's done over the years, apprx how many he does per year- specifically scoli? You're right to have hesitations, follow your instincts. Also - somewhere on the forum is a thread of what questions to ask your surgeon; asking those may give you more confidence in him, or just may rule him out. Good luck!

leahdragonfly
03-21-2012, 09:41 AM
Hi there,

I also would be concerned that this doc doesn't have sufficient experience specifically with your type of problem. I think the approach he is suggesting is out of the ordinary for your problem and may not be the best option for you. I would really urge you to get another opinion from a SRS surgeon, someone who sees lots of scoliosis patients. If you tell us your area you may even get some recommendations from people here who have had similar surgeries.

Before I had my surgery, my surgeon gave me the names and numbers of three patients who had similar surgeries to mine. I called all three, and heard about their experiences. They were also in various stages of recovery, one was 6 months post-op and one was a year or so.

You can search for experienced scoliosis surgeons at www.srs.org and search for a specialist. Let us know if you need help navigating this.

Good luck,

leahdragonfly
03-21-2012, 09:42 AM
Hi there,

I also would be concerned that this doc doesn't have sufficient experience specifically with your type of problem. I think the approach he is suggesting is out of the ordinary for your problem and may not be the best option for you. I would really urge you to get another opinion from a SRS surgeon, someone who sees lots of scoliosis patients. If you tell us your area you may even get some recommendations from people here who have had similar surgeries.

Before I had my surgery, my surgeon gave me the names and numbers of three patients who had similar surgeries to mine. I called all three, and heard about their experiences. They were also in various stages of recovery, one was 6 months post-op and one was a year or so.

You can search for experienced scoliosis surgeons at www.srs.org and search for a specialist in your area. Let us know if you need help navigating this.

Good luck,

KathK
03-21-2012, 08:44 PM
Hi,
I actually did not ask my surgeon for patient referrals since I had gotten so much information from this forum. My aunt also introduced me to a former patient of my surgeon (a friend of hers).

The one thing I would add to the advice that you have already received is to ask your surgeon if he completed a fellowship beyond his orthopedic residency and, if so, what was the fellowship area. Some SRS surgeons have completed fellowships in spinal deformities.

Since your curve is in your lumbar, it is crucial that your surgeon creates a balanced lordosis curve. You don't want sagittal imbalance!

Follow your instincts and keep asking questions. Are you in pain? A 45 degree curve, if not progessing and not painful, is something that could be watched for some time.
Kathy

jrnyc
03-21-2012, 09:36 PM
i would suggest that you trust your gut....
and...why not get another opinion...or two...?
you don't know...you might find a surgeon with lots of experience who is just right for you...
this surgeryis scary enough when one has faith in their surgeon's experience...

i was given two phone numbers of two patients similar to me...
however, i knew before i even called them that they would be happy with their surgery...
i do not think any surgeon would want a potential patient to speak to a former patient
who is not happy with their results...but i do understand why you want to hear another
patient's experiences and recommendations...

that said, i haven't had surgery...yet...
but i do know which surgeon (who takes my insurance) i prefer...

is there a reason you want your surgery done now...?
i had the same thoughts the previous writer mentioned about no hurry with a curve of 45 degrees...??

jess

JenniferG
03-22-2012, 12:30 AM
I agree with the above posters. I feel the most important factor in a good outcome is the surgeon's experience and skills.

I asked my surgeon for a patient referral and a woman my age phoned, who'd had the same length fusion I was facing and she told me the good, bad and the ugly, which, as it turned out, was quite a different experience to mine which indicates how different even the same surgery can be on different patients. Let alone patients with totally different medical situations.

Welcome to the forum and the very best of luck.

Silvercat
03-22-2012, 10:14 PM
Hi all

That sounds dodgy to me - on the other hand it might just be a clerical error made by his secretary/recpetionist. The doctor mayhave asked the secretary to find the phone numbers of 2 patients who had spine surgery, or somethig vague like that.

I asked my specialist for some former patient phone numbers. He said he would get them to call me rather than me call them (ie I don't have their numbers). I have not recieved any calls. I emailed to let him know that and he said it was up to them whether they want to call me or not. :-(
One of them is a doctor herself (a GP) so I am interested to hear her views.

Cheers

Lisel

debbei
03-24-2012, 10:28 AM
Did you ask the surgeon, outright--how many scoliosis surgeries do you perform per week, per month? How many surgeries have you performed THIS SPECIFIC surgery? If he hasn't done many of your surgery I would go elsewhere. Linda could probably tell you how many scoliosis surgeries per month is an indication of good experience. My feeling was that i wanted to go with someone who could do this surgery in their sleep....well not really LOL.

titaniumed
03-24-2012, 12:58 PM
Suzy would be a good person to talk to. She is about your age, and had Lumbar scoliosis surgery a few years ago.
She also knows her stuff.
http://www.scoliosis.org/forum/member.php?2982-Suzy

Contact her, tell her Ed sayís we miss her on the forum. (smiley face)

Ed

YB1125
03-27-2012, 02:12 AM
Thank you all for your kind support and I am very happy this forum exists ;)
The Doctor assistant said the Doctor told her which patients to contact for referrals. She said 3 were supposed to call me, I only heard from 2. Anyways I emailed the Doctor directly asking for the patients referrals, I outlined that I am looking for Lumbar scoliosis female patients. I said the more similarities the better. I did say a female patient, which is very important since it's going to affect my body differently than a male.
I emailed him last week as he was out of town so waiting to hear back. I know Doctors always have good referrals to offer, but it doesn't matter really, I just want to know that his patients with similar surgery had good outcome and he have experience with bringing good outcome forward.

And for your questions, Yes I have a 45 degrees scoliosis but because its in my Lumbar I am experiencing all kinds of everyday discomfort and pain and difficulty sitting down. I never had real issues with my back before, in the past year or so it became unbearable, not sure why..

When I met with my Doctor I had a long list of questions, I spent about an hour and a half with him. I asked him how many surgeries he performed, he kind of said that he doesn't know exact number so I tried directing him, saying Dozens? Hundreds? Thousands? I believe he landed in the hundreds, maybe couple of hundreds. He seemed very positive and assured it won't be a difficult fix as he was going to fuse only 3-4 vertebrates L1-L4 and I am in great physical health overall, since my waists are so petite he said it would be easier to get to my spine. I do like the minimally invasive approach, that was my initial interest.

YB1125
03-27-2012, 02:43 AM
P.S. Sorry about the late response, I really didn't want to deal with it. I just want this all behind me, as I see this now, it serves no purpose other than enormous amounts of stress. I have really changed in the past year, for the good too but mainly for the bad, I became restless and start developing a stress problem with everything in my life, I really just want a peace of mind with this whole subject. I do not know how everyone else copes with this condition, maybe I don't have the right support. If I was in my 60th I would put a robe on, devote my life to the service of others and suck up the pain, many times I wish I had that choice. But I have my whole life in front of me, I want to enjoy my youth, I want to be able to sit and move freely. I want to look in the mirror and look 'right'.

Months back, I went to a Healer massage therapist who worked on my back for 3 hours, once my back was so loose and relaxed he was able to push all my vertebrates back into place, one by one, my spine was straight, automatically my hips shifted into place, my whole body was put in it's natural place, like finding a missing lost puzzle piece. I cried, amazed of how comfortable our bodies were meant to be, I never felt so free and light,. It's like everything was right, where it belongs. I couldn't believe how awkward my body felt normally, no wonder I experienced all that pain. At the same time, I knew the free feeling of a straight spine too, it was always a part of me, kind of impossible contrary as I always had scoliosis. The straight spine would hold for about a minute, than my spine will go back to it's curve. How can I forget such an experience, I believe perfect balance is our birth right. Now, where do I unveil the perfect balance, I don't know, maybe it's a mind, body and soul type of thing. Is it really just up to the Doctor's abilities or does it come from me too.. Do we control the surgery's outcome with our mind just as much as the Doctor can with his qualifications and abilities?? What should we actually seek??

YB1125
03-27-2012, 02:19 PM
Ok so after my responses here last night, I received an email from the doctor assistant that a patient will be contacting me. I did receive a phone call this morning from a lady(female finally) who is 55 y/o, she sounded like she was in great shape, keeping active, petite like me. She said one of the ladies who worked at the hospital is the mother of one of the students she teaches and agreed that he was one of the best surgeon in that hospital . I was ok with everything, but she did not have a scoliosis Surgery, she had 2 disc degeneration and a cyst in her Lumbar. You could just imagine I was disappointed. I emailed the Doctor assistant and CC the Doctor just so we all are on the same page. I broke it down in the simplest way and said 'Why' it is important to me to speak to a Scoliosis patient and not any other condition. I guess we will have to see where it is going.
I am sure he is a good Surgeon as my intuition told me when I met him, I won't even considered him otherwise. But I got to get this last piece together. I also emailed this website http://www.thebetterwayback.org/ to get in touch with another scoliosis patient my doctor operated on, this is the same Technic and company my Doctor uses for Xlif (minimally invasive), will check with them if they can connect me with any of my Doctor's patients they have in file.

From here on I got to trust in the good of things and that everything is facing in one direction, which is a positive outcome. However this will come about, with whichever surgeon.. Everything happens for the good and there is no need to feel frustrated. It will all come together in it's right timing, in the right place for the best of my interest. As we believe so it would be.

YB1125
03-27-2012, 02:37 PM
Suzy would be a good person to talk to. She is about your age, and had Lumbar scoliosis surgery a few years ago.
She also knows her stuff.
http://www.scoliosis.org/forum/member.php?2982-Suzy

Contact her, tell her Ed sayís we miss her on the forum. (smiley face)

Ed

Thank you Ed, I just contact her, as I was reading some of her threads, she is a positive one. I appreciate you telling me about her experience.

YB1125
03-28-2012, 10:58 PM
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
03-28-2012, 11:09 PM
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
03-29-2012, 12:59 AM
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
03-29-2012, 02:18 AM
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
03-29-2012, 02:17 PM
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
03-29-2012, 03:45 PM
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
03-29-2012, 03:58 PM
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
03-29-2012, 04:15 PM
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
03-29-2012, 05:50 PM
http://beckersorthopedicandspine.com/spine/item/11249-20-spine-surgeons-focusing-on-scoliosis

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

Pooka1
03-29-2012, 05:51 PM
Here's another guy...

http://drlloydhey.blogspot.com/

jrnyc
03-29-2012, 06:30 PM
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
03-29-2012, 06:38 PM
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
03-29-2012, 07:34 PM
It is very rare that XLIF surgery without a posterior spine fusion, can be utilized for correcting scoliosis.

jrnyc
03-29-2012, 08:18 PM
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
03-29-2012, 08:56 PM
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/showthread.php?13175-Minimally-invasive-Surgery-Xlif-Help&highlight=deviren

jrnyc
03-29-2012, 09:13 PM
thanks, Linda, for the help in mental recall....
we used to call this Lyme brain fog...
now i call it getting old-er (keeping the -er)

jess

leahdragonfly
03-29-2012, 10:57 PM
YB mentioned earlier that the surgeon also mentioned that some short rods and screws would be put in from the back, but it seems that YB has glossed over that fact to herself (that is an open posterior) and is focusing on the XLIF thing. So I don't think her non-scoliosis-specialist surgeon is planning a stand alone XLIF, but YB seems to be focusing just on that, which is two separate incisions, one on the side and one on the back.

Also YB, did you discuss with your surgeon the risks over time to your lowest lumbar discs? Fusing L1-L4 puts the remaining L5/S1 disc in jeopardy of wearing eventually, especially at the young age of 29, so again this is not just a once-and-done surgery you are considering. Please consider this and get more opinions from qualified scoliosis specialists.

YB1125
03-30-2012, 01:08 AM
Thank You all for the support, that was very appreciated and much needed right now. before I respond to you all, I have to update.. I finally received an email from my Doctor CC'd to his assistant too, asking if I got everything addressed? Kind of silly thing to say as a first respond after the long email I sent him and his assistant about what kind of patient referral I needed. I said back "no I haven't and also confused of why I ask for lumbar scoliosis correction patients and keep receiving patients with other conditions..", his response to this gave it all, it's not that I didn't see it coming either but a part of me was sad to hear as it was the final confirmation I was waiting on, he last response: "I don't think I have an exact profile of what ur looking for. I'm sorry"

I made sure not to spend the day alone as I knew I would get depressed and angry. I was angry that I asked his assistant(different assistant) before I even met him about his experience with Scoliosis patients and I was told he had experience, than I bought a flight ticket, met with him, investigated him for an hour and a half and asked him so many questions about his experiences with Scoliosis corrections and now he obviously had maybe zero personal experiences. His brother is an SRS Doctor, maybe he did surgeries with him but not on his own obviously.

I know and I heard about Dr Anand, he doesn't take my Health Insurance, neither my Doctor's brother or many other known Doctors out there. As big as my city is I found no great Doctors here, my interest would be to find a Doctor in Southern California.
I am not giving up on a minimally Invasive Surgery though, it make total sense that things would advance and new technics would come out, we must evolve somehow, just need to find the right Doctor with plenty of experience, who have put it to the test many times.
I am not in a rush and not planning on making hasty decisions, I was just expressing my frustration, I am human and have feelings too.

YB1125
03-30-2012, 01:46 AM
YB mentioned earlier that the surgeon also mentioned that some short rods and screws would be put in from the back, but it seems that YB has glossed over that fact to herself (that is an open posterior) and is focusing on the XLIF thing. So I don't think her non-scoliosis-specialist surgeon is planning a stand alone XLIF, but YB seems to be focusing just on that, which is two separate incisions, one on the side and one on the back.

Also YB, did you discuss with your surgeon the risks over time to your lowest lumbar discs? Fusing L1-L4 puts the remaining L5/S1 disc in jeopardy of wearing eventually, especially at the young age of 29, so again this is not just a once-and-done surgery you are considering. Please consider this and get more opinions from qualified scoliosis specialists.

Yes, Xlif would be 2 incisions from the side and few small ones on the back with 2 rods and 4 screws. This is what the Xlif videos shows too, sorry I didnt emphasize it.

Yes, there is always a chance of deterioration of L5/S1 over time, my Doctor told me that too. His point was, why to fuse more when you don't need to? because that can create other damage too, you can always add more fuses if it comes down to it later on. The Doctor said L5/S1 were stable/neutral Vertebrates (stable means falling on the plumb line, and neutral means having no rotation.) Please see attachments I added here to view the technic..

My thought on that was, my body is already out of balance with the scoliosis, there is already pressure on different parts of it, it's affecting my neck bones, my knee, hips. all those can go bad over time too. I can't sit straight easily so it makes me hunch- this can cause future problems and deformities over time too. From the research I have done, it seemed that the ones who are most active regularly and keep healthy body and good muscle structure will more likely to have better results and better outcome over time with Traditional surgery and I am sure minimally invasive too.. Also deterioration can happen with traditional surgery as well.

I am still researching Xlif though and will discuss this more into depth with future surgeons I will meet.

YB1125
03-30-2012, 02:56 AM
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

For your questions, yes, I have explored many alternative options, have spent thousands of Dollars on Chiropractors and Physical Therapy, which did not make any difference, if anything it made it worse. I work out about 4 times a week so that makes me feel better, I am very strong physically. The relief is only temporary as the pain will kick back in eventually, the biggest thing is that I canít sit for long, my work require me to sit for hours sometimes and be sure those are my worse days. It's affecting my posture too and creating other problems because of it.

XLIF don't need a long fusion as I was explained, they put little bone graft in square shape between the vertebrates, that straightens out the affected Vertebrates and the rest of the unaffected spine will straighten on it's own as a result, as it is only curved because of the main Vertebrates which are out of place and causing rest of curve, if that make sense..

No, there are no guarantees in life for anything. 2 people can open same kind of business, put same effort, one will be successful and the other won't. What make 2 patients who have same exact problem at same spot and treated by same Doctor have 2 different outcomes? this must come from within us, we must hold some kind of power in directing things, maybe subconsciously. All of us with Scoliosis, it is a result of something which held within us as I believe, this needs to be unveiled and addressed. We are holding some kind of unsettled energy that resulted in our spines's deformation. I see this journey as a spiritual one too, healing journey.


p.s.
No decisions are risky ones, as long as enough thought and research was put into them.

Pooka1
03-30-2012, 06:13 AM
Yes, there is always a chance of deterioration of L5/S1 over time, my Doctor told me that too. His point was, why to fuse more when you don't need to? because that can create other damage too, you can always add more fuses if it comes down to it later on. The Doctor said L5/S1 were stable/neutral Vertebrates (stable means falling on the plumb line, and neutral means having no rotation.)

You are still relatively young and in good shape from what I understand. They seem to be treating you like a kid in term of not wanting to fuse lower than L4 which is good. In an older patient they may have just suggested going to the sacrum, I don't know. You may get away with not needed a distal extension for years and years if they can straighten and balance you. I don't know... they know about these things. Maybe the short length of the proposed fusion will not put you in much danger of needing a distal extension. That would be very good. Maybe it's mainly the long fusions ending at L4 that wear out the lower discs. Who knows. If you wait, the curve might involve more of the lumbar and you might not have so many years with an unfused L4-sacrum. I would be asking what exactly determines how fast the lowest two discs wear out under a fusion ending at L4.

I am not a patient; I am a parent. But I can tell you I would be asking those questions over and over until I got actual answers from a number of surgeons were it my kids. It alarms me to see what apparently isn't asked of surgeons in some of these testimonials. Maybe they are asking and the testimonials are just incomplete.

You have probably asked these or similar questions.

leahdragonfly
03-30-2012, 10:24 AM
Hi YB,

Since you are looking for a surgeon in SoCal, what about Dr Pashman at Cedars-Sinai? He is very well regarded I believe, and his website says he does more scoliosis surgery than anyone else on the west coast. He has a website with at least 50-60 case examples with x-rays, and he also does phone consults for $150 if you send in your x-rays. Maybe that would be an option. Here is a link, and you can check out his scoliosis pages and cases. I learned a ton by reading through each of the case studies (it takes a long time!).

We of course are all human here, and we all have fears and feelings. Many of us here have been dealing with scoliosis in our lives for decades, so we are just trying to share our experiences with you so you have the best outcome.

Good luck,

jrnyc
03-30-2012, 07:37 PM
"....something from within us, we must hold some kind of power in directing things, maybe subconsciously. All of us with Scoliosis, it is a result of something which held within us as I believe, this needs to be unveiled and addressed. We are holding some kind of unsettled energy that resulted in our spines's deformation. I see this journey as a spiritual one too, healing journey."

i do not know about anything subconcious directing anything or any unsettled energy resulting in spinal deformity...
that does not sound like anything that makes sense to me...
i do know my 42 thoracic, 70 lumbar degree curves, degerative disc disease, listhesis, spinal stenosis, spinal arthritis, hypokyphosis, severe rotation, and a few other conditions are what is making my spine crooked and causing me extreme
pain...nothing in my subconcious is doing that...

i was not referring to chiro or PT...i was thinking more along the lines of epidural injections, nerve ablation, facet
block, etc...for alternative tx to surgery....

there are some great scoli surgeons in both southern and northern CA...if it is convenient for you to go to CA, you
should have a choice of very experienced surgeons, and surely some will take your insurance...
Anand didn't take mine either...i paid cash for consult and flew 6000 miles round trip, just to see what he had to
say about minimally invasive surgery for lumbar spine....to me, it was worth the trip...

good luck with whatever you decide
jess...& Sparky

Pooka1
03-30-2012, 07:45 PM
YB wrote: "....something from within us, we must hold some kind of power in directing things, maybe subconsciously. All of us with Scoliosis, it is a result of something which held within us as I believe, this needs to be unveiled and addressed. We are holding some kind of unsettled energy that resulted in our spines's deformation. I see this journey as a spiritual one too, healing journey."

i do not know about anything subconcious directing anything or any unsettled energy resulting in spinal deformity...
that does not sound like anything that makes sense to me...
i do know my 42 thoracic, 70 lumbar degree curves, degerative disc disease, listhesis, spinal stenosis, spinal arthritis, hypokyphosis, severe rotation, and a few other conditions are what is making my spine crooked and causing me extreme
pain...nothing in my subconcious is doing that...

Well she is correct only in the case of the exquisitely rare "hysterical" form of scoliosis.

The rest of the cases are widely acknowledged to likely be due to multifactorial, polygenetic etiologies. You can't think or emote your way into or out of those curves.

Nothing spooky. There never is.

YB1125
04-01-2012, 01:30 AM
You are still relatively young and in good shape from what I understand. They seem to be treating you like a kid in term of not wanting to fuse lower than L4 which is good. In an older patient they may have just suggested going to the sacrum, I don't know. You may get away with not needed a distal extension for years and years if they can straighten and balance you. I don't know... they know about these things. Maybe the short length of the proposed fusion will not put you in much danger of needing a distal extension. That would be very good. Maybe it's mainly the long fusions ending at L4 that wear out the lower discs. Who knows. If you wait, the curve might involve more of the lumbar and you might not have so many years with an unfused L4-sacrum. I would be asking what exactly determines how fast the lowest two discs wear out under a fusion ending at L4.

I am not a patient; I am a parent. But I can tell you I would be asking those questions over and over until I got actual answers from a number of surgeons were it my kids. It alarms me to see what apparently isn't asked of surgeons in some of these testimonials. Maybe they are asking and the testimonials are just incomplete.

You have probably asked these or similar questions.

Thank you for the important notes. Didn't know there was a different in levels operated on with the age. It's a great question to ask a surgeon.. about the timing to the wearing out of discs below level L4. My doctor was actually planning on maybe getting away with L1-L3. I am not thinking far into the future, I probably should, or maybe didn't find it valid to worry about things that 'may' happen, but maybe its good to know those things. I knew this could happen and my intuition told me to strengthen the muscles around there, if there is muscles to support the bones there is less pressure on bones. I really put extra effort at the gym..

YB1125
04-01-2012, 01:35 AM
Hi YB,

Since you are looking for a surgeon in SoCal, what about Dr Pashman at Cedars-Sinai? He is very well regarded I believe, and his website says he does more scoliosis surgery than anyone else on the west coast. He has a website with at least 50-60 case examples with x-rays, and he also does phone consults for $150 if you send in your x-rays. Maybe that would be an option. Here is a link, and you can check out his scoliosis pages and cases. I learned a ton by reading through each of the case studies (it takes a long time!).

We of course are all human here, and we all have fears and feelings. Many of us here have been dealing with scoliosis in our lives for decades, so we are just trying to share our experiences with you so you have the best outcome.

Good luck,

Thank you, your sweet words are very appreciated. I am gonna put together all the doctors everyone recommended me here and research and contact them.. Lots more homework ahead..

Pooka1
04-01-2012, 08:58 AM
Thank you for the important notes. Didn't know there was a different in levels operated on with the age. It's a great question to ask a surgeon.. about the timing to the wearing out of discs below level L4. My doctor was actually planning on maybe getting away with L1-L3. I am not thinking far into the future, I probably should, or maybe didn't find it valid to worry about things that 'may' happen, but maybe its good to know those things. I knew this could happen and my intuition told me to strengthen the muscles around there, if there is muscles to support the bones there is less pressure on bones. I really put extra effort at the gym..

It's a shame your efforts at PT did not help enough with pain. If they did and you weren't progressing, you wouldn't need surgery.

If you can stay at L3 or above you may never need a distal extension. The fact that they mentioned trying I think may be due to you being so young relative to many other adult patients. You may be on some cusp of adolescent-adult in terms of surgical decisions and what gets weighed against what. I have noticed that kids with what appear to be frank lumbar curves are mostly only fused to L3 regardless of other surgical indicators. I can think of only 2 kids on this forum who were fused to L4. The surgeons seem loath to go below L3 because it increases the chances of needing a fusion to sacrum with each level (on average).

We have a case where a surgeon operated below the standard surgical threshold on a thoracolumbar curve on a kid for the expressed purpose of saving levels in the lumbar. I would ask about whether waiting affects your chances of stopping as high as possible. If he thinks you can strengthen the muscle enough to allow ending at L3 then that is the way to go were it my kid (not that you are a kid!).

Good luck.

leahdragonfly
04-01-2012, 09:46 AM
Hi YB,

here is the link I mentioned above for Dr Pashman at Cedars-Sinai. http://www.espine.com/

There is a link on the left of his page for "Adult Scoliosis Cases."

Good luck,

Pooka1
04-02-2012, 05:57 AM
YB,

Check out this case... Dr. Hey stood on his head to de-rotate and level the lower lumbar vertebra so he could stop the fusion at L3 in a kid...

http://drlloydhey.blogspot.com/2011/07/14-yo-young-man-with-thoracolumbar.html


Since we caught It early, his curve was more flexible. We got an awesome correction, and was able to keep fusion Shorter, down to L3 as opposed to L4 by working hard do derotate that lumbar segment, and osteotomizing the lower segments to free them up for better correction. This is great news for Evan, since he will have 3 movable discs at bottom as opposed to 2.

You could ask Pashman or other surgeons if you can possibly get away with doing these types of procedures to be able to end your fusion at L3. They don't sound minimally invasive but you may have a choice between one open operation in your lifetime (stopping at L3) and two operations, one minimal stopping at L4 which counts down to fusion to pelvis (minimal or open) in a few years.

rohrer01
04-02-2012, 11:20 AM
YB,

Check out this case... Dr. Hey stood on his head to de-rotate and level the lower lumbar vertebra so he could stop the fusion at L3 in a kid...



Awww, I went to his website hoping to see him standing on his head. I was so disappointed! :'(

Pooka1
04-02-2012, 11:27 AM
Awww, I went to his website hoping to see him standing on his head. I was so disappointed! :'(

LOL!

Good one.

But getting back to the topic at hand, were it me, it would be a complete no-brainer to go with an open operation that can stop at L3 versus minimally invasive that stops at L4. Absolutely a no-brainer. The difference in the long term may not be able to be more stark (one operation not including pelvis compared to two operations, the second one including pelvis). That is what might be on the table (no pun intended).

YB1125
04-11-2012, 07:16 PM
LOL!

Good one.

But getting back to the topic at hand, were it me, it would be a complete no-brainer to go with an open operation that can stop at L3 versus minimally invasive that stops at L4. Absolutely a no-brainer. The difference in the long term may not be able to be more stark (one operation not including pelvis compared to two operations, the second one including pelvis). That is what might be on the table (no pun intended).

Thank you all for the great advice :)
I am gonna meet now with new surgeons, so starting to make appointments. Will make sure to ask this time all the right questions. Will also ask for stopping at L3 and what the differences about how low the fusion goes.
I had to clear my mind for a while, been a bit angry with the delays and other things on my mind so I took a time off to 'not' think about everything. I even asked myself if I can skip the surgery and not have it, but was in so much pain last couple weeks, if I could avoid the pain so maybe but as I was hurting, this decision seemed to not be so optional. I still let it go and tried focusing on other things, till I was at the gym and kept hearing the song "when you let it go it will come right back to you", well, ok so before I knew it was approached by couple of interesting inquiries, will update when I have something new going on.. back to appointments now.

Pooka1
04-11-2012, 07:37 PM
Thank you all for the great advice :)
I am gonna meet now with new surgeons, so starting to make appointments. Will make sure to ask this time all the right questions. Will also ask for stopping at L3 and what the differences about how low the fusion goes.
I had to clear my mind for a while, been a bit angry with the delays and other things on my mind so I took a time off to 'not' think about everything. I even asked myself if I can skip the surgery and not have it, but was in so much pain last couple weeks, if I could avoid the pain so maybe but as I was hurting, this decision seemed to not be so optional. I still let it go and tried focusing on other things, till I was at the gym and kept hearing the song "when you let it go it will come right back to you", well, ok so before I knew it was approached by couple of interesting inquiries, will update when I have something new going on.. back to appointments now.

Hey YB,

It's good to step away and clear the mind.

You know, I was thinking you may have trouble finding someone to fuse a 45* lumbar if you haven't exhausted all conservative approaches to pain control. As I recall your posts, it seems like you have exhausted them but I think you will be steered towards that first given how relatively small your curve is. In fact you are still technically below the surgical threshold unless there is demonstrated recent progression of a certain magnitude.

If you can't find another surgeon who thinks they can keep your fusion to L3 then were it me, I would send my radiographs and Dr. Hey's case study to Dr. Hey and any other surgeon and ask about it. If you get fused to L4, it's going to be a countdown to pelvis to use Boachie's words. You are so young yet and I think you might find a surgeon who will stand on his head to keep your fusion at L3 distal (i.e., treat you like a kid).

Good luck.

les130
04-11-2012, 10:23 PM
I know I'm a little late on this thread, but I just wanted to tell you my experience...

I'm 26, congenital scoliosis, about 70 degrees at the time of fusion (L2-L4) when I was 7. A few years ago I began to develop lots of pain and in May 2011, had a surgeon do an XLIF (L1-L2). The surgeon was hopeful that an XLIF would treat my pain related to the affected levels, that the "minimally invasive" approach would work for me. A year later, I'm two weeks away from a T5-sacrum fusion, and I really wish I had just had the big surgery a year ago. Obviously, everyone's case is unique, but my XLIF experience has been less than ideal.

Also, in my case, minimally invasive did not equate to an easy recovery or a less painful one (just sayin'). I just thought I'd offer a little of my story!

jrnyc
04-11-2012, 11:17 PM
i had a consult with Dr Anand at Cedars Sinai 2 years ago...
he does not take my insurance, so i just flew out from east coast to see what he said....
he offered me surgery to the sacrum, all minimally invasive..approaching from both the back
and the side...there was no limit to how many levels could be fixed with minimally invasive
approach...so i would not blame that approach for the fact that you now need more levels
fused...i might blame the procedure done as too limited for what you needed....
if you only had the approach from the side, and not posterior as well, maybe that is why you have
another surgery scheduled...

best of luck with your next...and last...surgery...

jess

Pooka1
04-14-2012, 10:15 PM
http://drlloydhey.blogspot.com/2008/12/14-yo-with-5840-degree-double-curve.html

It doesn't say if he was able to do it though but he planned to try.


This morning we straightened up Claire, a 14 yo from Richmond
Virginia. She had a progressive double curve scoliosis with 58
degree lower curve, and 40 degree upper curve.
She came and saw me for a second opinion last month after she was
scheduled to have scoliosis surgery with fusion down to L5.
Bending films at Hey Clinic taken that day suggested that the lower
curve, although large, was nicely flexible at the base, so I was
hopeful we could spare her 3 rather than 1 lower disc spaces (a BIG
deal).

Pooka1
04-14-2012, 10:19 PM
Oh I think he did only go to L3 on that other case.

http://drlloydhey.blogspot.com/2008/11/22-yo-young-lady-with-painful.html


It is important to minimize the number of fused segments. I used some preop bending X-Rays to determine that I could preserve the bottom 3 discs, which is much better for Alex in the long run.

I recently saw a similar curve in a 15 yo girl where they were planning to fuse to L5. Similar bending films revealed that I could fix the curve with a shorter fusion, sparing 3 discs as opposed to only 1 disc. This helps prevent adjacent level failure and maximizes flexibility.

Mojo's Mom
04-18-2012, 05:20 PM
I am very late to this thread but just wanted to say thAt when I asked my surgeon's patient coordinator for patient referrals I got within two days a good long list of women with fusions that would be very similar to mine, all scoliosis patients. You want someone who does a LOT of these procedures and who wouldn't even think of giving you a referral for someone who didn't even have scoliosis. Just my opinion.

YB1125
04-25-2012, 11:12 PM
Thank you all for the inputs. I met with another surgeon Dr William Smith. He does Xlif as well. He suggested fusion from T10-L3 without rods. Brace for 2-3 months afterwards. He said this was from his initial impression. There was an older lady at office (56) which had same procedure just a lot lower than L3, no rods, she said she is doing wonderful. I asked him and he said he operate on scoliosis corrections 2-5 times per week and he is well considered/respected in the Minimally invasive surgery world. He is located in Las Vegas. I asked for referrals, it was only couple of days ago- so waiting. This doctor wants to fuse 2 more levels compared to the previous one I have already discussed in this thread. (T10-L3 compared to L1-L3/4). He did support keeping physically active after surgery for best long term results which I liked, I think every surgeon should highlight this!!

As I said before I am meeting with a variety of them and will question next xlif surgeons about the rods as well.. and reasons and outcomes.. etc

Meeting with different well considered Surgeons, afterwards will do my homework on what they all said..

jrnyc
04-26-2012, 07:38 AM
i thought people without rods end up losing the correction and having revision surgery....
there are people on forum who have reported exactly that experience....
i would get 2 more opinions before going ahed with fusion without rods...
what is the reason for it...????

jess

leahdragonfly
04-26-2012, 09:47 AM
Hi YB,

I guess I am really confused by what your new surgeon told you, because it just doesn't make sense. If he is not using rods, is he saying that he can fuse T10-L3 with all XLIF's? Because without some type of fixation, a brace for 2-3 months is not enough to hold the area still to ensure healing and solid fusion. I also thought XLIF is only for lumbar fusion.

Is he a SRS surgeon (Scoliosis Research Society) who regularly does scoliosis surgeries? Again, the part about not using any rods does not make any sense.

I am concerned for you, and would hate to see you make a big mistake with your back by using an unsuitable surgeon. Please continue to get more opinions.

YB1125
05-25-2012, 09:33 PM
I met with a couple other Doctors in California.

I didn't expect to hear the info I heard from the surgeons, they both explained me things in different ways, I think I may have some clarity on some things we discussed here..

First Doctor, Dr Mundis from San Diego, I thought had the best assistant/nurse ever. She was so knowledgeable and was so detailed with everything she did, I really like her and that helped a lot, as I felt I was in good hands. They did a bunch of measurements other surgeon Offices didn't do. Dr Mundis was very friendly and easy to talk to. He looked at my MRI and Xrays and had 2 students with him in the room and the wonderful nurse as well.
Dr Mundis explained things to me hands on with details too. He said my curve actually measured at 48 degrees and it showed flexibility to 2 degrees (previous surgeon came up with 45 curve and 6.6 degree for flexibility). He actually suggested a traditional scoliosis surgery T11-L3/4. He gave me few reasons why Xlif won't work for me;
He said I am young and healthy and my body will have the ability to recover well, in the long run 10-15 years from now I will benefit from traditional surgery better as it have proven to work (sounded to me like xlif is very new). He said surgery will help stop progression overall. He said also that with Xlif you cannot rotate the vertebrates, therefor I will have better appearance with traditional as rotation can be done, he thought I was young enough for it to be a benefit too. He also showed me why my spine cannot be fixed to 0 degrees even if it is flexible because he will have to go below L4 and that was not recommended. He also said Xlif works better on older people because their scoliosis have different needs, that is why I won't find referrals my age. He said the benefit of Xlif is at the short term only as recovery is faster at first, but a year later after either surgery I would recover the same. Also he said I won't need physical therapy as he think I am motivated enough to do things on my own.

Second Surgeon, Dr Terrence Kim in Los Angeles, was very conservative, he said no surgery is never recommended, he wanted to keep it on the safe side of observing progression. He said I should wait till new technology becomes available. I somehow convinced him that my body already shows signs of future issues because my lack of ability to sit straight, than he ordered new x rays and brought me in the room with his partner Dr Pashman I have originally approached who he works with, he felt obligated to include him. He measured my old x rays at 35 degrees curve, other surgeons measured same x rays at 45-48 and the new x rays he ordered that day measured at 37 degree curve. I am not sure why he came with such different results compared to the other surgeons, he said it was normal. Regardless, he was very conservative. Him and Dr Pashman discussed surgery with me in the room, their reasons of why xlif won't work on me were: I have a unique curve as a combination of Lumbar and Thoracic, Xlif is for Lumbar access only, this was when they offered a combination of Traditional and minimally invasive, a posterior spinal fusion T9-L4. They didn't mention anything about rotation. They said I have a unique age and curve. Most patients operate when teenagers or usually over 50, they said I am experiencing unusual pain for my age group which usually don't happen till later age, they said most of the ones my age who didn't have surgery before their 20th won't do it till their probably over 50 when pain progresses.. I broke down in tears at this Doctor's office once I was left by myself, I finally let my frustration with the whole process out. It felt good to finally do it..

A couple of days later, I received one patient referral from each surgeon office I visited. I am now in the stage of contacting the referrals. I think I got a lot of thinking to do!!!

Also I never heard from Dr William Smith in Las Vegas. The one who promised xlif without rods, I received zero referrals 4 weeks later. I know he does a lot of surgeries around the world, sounded like it may be 3rd world countries. I think he could be using those people as a test market since they can't really sue him if anything goes wrong. I am not saying it cannot be done or that he doesn't get good results but it is obviously very new to the market. I wish I was born 20 years later!!

jrnyc
05-25-2012, 10:29 PM
is there a reason you did not name the doctors...?

if you want to wish for something...NOT having scoli comes to mind...as opposed
to being born with it 20 years from now...

jess

YB1125
05-26-2012, 10:09 PM
is there a reason you did not name the doctors...?

if you want to wish for something...NOT having scoli comes to mind...as opposed
to being born with it 20 years from now...

jess

Hi Jess, Plesae look up at my previous post, I added the names and locations of the Surgeons in the post itself.


Yep, NOT having scoliosis would be better. So many things to wish for, unfortunately the past cannot be changed only an optimistic outlook of the future..