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lbinny1
02-05-2008, 11:42 AM
Hello,

I am new to the forum and wanted to know if anyone has had surgery with Dr. Neuwirth. I recently saw him as a second opinion and advised that I have surgery as well. I have a right dorsolumbar cuve. It is currently at 39 degrees and has an apex at T7. He wanted to fuse 4-5 vertebrae in the thoracic region through a anterior approach.

Basically, I wanted to know if anyone else has the same curve, if anyone has seen him and your opinion on my situation. I am 24 years old and experience minimal mid and lower back pain that feels muscle related, but I suppose the muscles surrounding the curve.

Best,
Lori

suzyjay
02-05-2008, 01:50 PM
I thought that surgeons donít recommend surgery unless a personís curve is over 45 degrees. I would get check ups with a surgeon for two years and see if the curve gets bigger. If the curve doesn't get bigger and you are not in bad pain - definitely do not get surgery. I don't think anyone going in for this surgery knows how devastating it is. We know it a painful and slow recovery but nothing could have prepared me for this surgery. I was 44 yrs old when I had surgery and this Thursday it will be a year I was in great shape and great health, my surgeon said because I am such good shape I should recovery quickly, boy was he wrong. I got staph infection from the surgery and I have to go back into surgery and have the hardware removed. Because staph attaches itself to any implants you can only get rid of it by removing the hardware. I went to one of the best surgeons, chief of spine surgery at NYU Medical Center and Joint Disease. Let surgery be your last resort.

Sue

Susie*Bee
02-05-2008, 02:32 PM
Lori--First--welcome to the forum! Then, let me kind of echo what Sue said. No one would want to scare you away from the surgery if it's necessary, but it is huge for anyone--and especially so if it's a longer fusion. It sounds like yours wouldn't be very long, but it will still be a hard surgery. Do you have any other problems with your spine that have caused the surgeons to recommend surgery? How old are you, if you don't mind us knowing? Is it progressing at a fast rate?

Dr. Neuwirth is the co-author of The Scoliosis Sourcebook-- which presents a lot of information on scoliosis and various treatment options, etc. My main fault with this book is that almost all of the case studies presented are from young women, with relatively short fusions, so it doesn't paint a very good picture of the much longer recovery time many of us older scolis require... and all the problems that can occur. I read it at least a couple of times prior to my surgery. The book I liked better, because it's presented from a patient's standpoint, is on the surgery itself and gives lots of practical advice, is David K. Wolpert's book Scolioisis Surgery: The Definitive Patient's Reference. Both books are good sources, though, for understanding more about scoliosis.

Good luck with figuring things out. Scoliosis surgery is very invasive and even if you are young, you will most probably need to take a chunk of time out of your life for the recovery.

CHRIS WBS
02-05-2008, 04:54 PM
Hi Lori,

If you type Dr. Neuwirthís name in the search engine on top, you will find his name mentioned a number of times by members who have either consulted him or had surgery by him. I believe he is one of the top adult scoli surgeons in the country, and you mention that he is your second opinion and second recommendation for surgery. You are wise to have sought a second opinion. I would even consider a third and fourth if your insurance will allow. Perhaps you have a misprint in your post though, because as Sue mentions, most surgeons do not recommend surgery for a curve as moderate as yours unless of course you have experienced a sudden rapid progression. You also say your curve is in the lumbar spine and the surgeonís recommendation is a fusion in the thoracic spine, so there appears to be some inaccuracy in your post.

Sue, I canít tell you how badly I feel for you. You are a perfect example of how even in the best of hands, things can go very wrong.

Chris

lbinny1
02-06-2008, 10:55 PM
I am 5'4", 24 years old and weigh anywhere between 98-101 lbs depending on the day.

According to the Dr.'s I have a dorsolumbar/thorocolumbar curve. I believe the Apex is at T7 and it extends to L2. I am assuming based upon my reading that the lumbar curve is compensatory. I compensate 2cm to the right and yes my curve is currently 39 degrees and Dr. Neuwirth said, let's just say it's 40 degrees.

My insurance did not cover seeing Dr. Neuwirth nor will it cover the surgery if I choose him. Unfortunately, I have medicaid which is a major problem.

Both of my parents have S curves or at least that is what they say. I do not know how terrible it is, but they claim it is pretty horrible. My grandmother had severe kyphosis and was truly a hunchback in old age. She broke her back once when she was a child and once when she was in her teens to twenties. I am not exactly sure when. I also believe she had severe scoliosis.
My grandfather had minor scoliosis, which he was not aware he had until my mother pointed it out when he was an older man. My uncle has stenosis.

When I was a tween I was told to wear a brace and as a young child, I did not realize the consequences of not doing as told. So, I assume my curve has progressed since, but I can not say for sure. I think I had a curve in the upper teens to low twenties.


The first doctor I saw, said I have two options; watch and wait or surgery. He suggested it will be very difficult to have the surgery later on when I have little kids running around the house. He also said it may progress 1/2 - 1 degree per year. Dr. Neuwirth said I could watch and wait, but that statistics show that the curve I have is more than likely going to progress.

I am at a crossroad at this point. I am in the head that I am trying to prevent things from getting worse. My mother advises that one does not have surgery unless they can no longer walk and my father says unless the pain is excruciating.

If anyone has advise, please let me know.

Btw, I posted a thread in the insurance forum because of medicaid dilemma. Thank you all in advance.

lbinny1
02-06-2008, 11:12 PM
I got staph infection from the surgery and I have to go back into surgery and have the hardware removed.

Sue

Was your doctor Schwab? If so, rather interestingly enough, a girl that is now 22 years old or so also got a staph infection from the surgery with him. She had the surgery done when she was a teenager. She had to have a second surgery to have the hardware removed and advised me that I should not consider it and that the surgery was the worse thing she could have done.

Lori

CHRIS WBS
02-07-2008, 09:02 AM
Susie,

The problem I have with David Wolpertís book is that while it offers practical advice for preparation and after care, itís written by a healthy young man who had a routine surgery. When I ready about the BIG extensive surgeries here experienced by women in their 40s, 50s and 60s and some with resultant complications, itís like comparing apples and oranges. I think Suzyjay expresses the sentiments of many when she says that nothing could have prepared her for this.

Chris

Susie*Bee
02-07-2008, 09:35 AM
But, in general, it paints a picture that is worth reading, as long as you realize it's not a perfect fit for everyone... I know I certainly didn't advance as quickly as what he spoke of, but he does give some disclaimers in those regards. I also felt it was more apropo to my situation than the Neuwirth book, which seemed to only speak of young gals' surgeries--and much shorter fusions as well. With the info from both books, though, I was feeling very guilty and confused (for want of a better word) regarding how long I took pain meds, etc. I don't think there is a good resource for reading about the extent/recovery for us "older" scolis... I don't think either of those books address long fusion (as in length of fusion, not time in surgery) surgeries in older people adequately, if at all. I wish I had known about the forum sooner, as it's a great place to read about that facet... Actually, one of my daughters had found it but didn't tell me because she thought I'd find it too distressing. My thought it that she found it around the time Trudy died... and I didn't "discover" it on my own until about 5 months post-op... I also remember reading a post that said this may be a slanted place to find out how it goes after surgery, because many who haven't had any problems move on to their busy lives, never visiting the forum or sharing their recoveries... Food for thought, anyway.

As for Suzyjay, trulyaries, and so many others awaiting (or recovering from) revision/repair surgeries, when I read those, I am so heartbroken for the ones involved. And you'd better believe that I have my heart in my throat at those moments, wondering if that will happen to me as well. We go into this (at least I would hope others' surgeons let them know...) with the full realization that there could be major complications/death/etc. I'm not a gambler and I don't like playing the "odds", but on the other hand I didn't like the limitations I was experiencing because of the scoliosis--and they were increasing at a faster and faster rate all the time. I also know I am a possible candidate for revision in a few years, as we played the odds with how far to fuse and may need L5-sacrum at some point...

In the meantime, we have the resources that we have--and David Wolpert's is the one I like the best for many reasons, although I found both to be very informative in regards to scoliosis in general and the basics of the surgery... Everyone is different, every surgeon is different, every hospital is different, and every recovery is different... We will all get through this adventure and be the stronger and (hopefully) straighter for it. Because of the support on this forum, there are those that will help us up when we fall, for whatever reasons--medical, emotional, etc. And because of that support, and our shared faith in the Lord, both you and I will go forward and be able to deal with our lives. Take care!

trulyaries
02-07-2008, 09:26 PM
Well said, Susie*Bee. Just to toss my two cents in ... it seems that pretty much all the books on scoliosis cover everything up to and including the surgery and the immediate aftermath and then ... nothing. It's like: you're cured; goodbye. This forum is the only place I have found practical and useful information about what happens when things don't go perfectly. Now that I'm facing my fourth go-round on Monday, I sometimes think back and wonder if I should have started down the surgical path in the first place. But then I remember all the pain and the tests and the alternate treatments and the PT and then I remember why I did what I did. I just always come back to "It is what it is" and all the wishing in the world isn't going to make it better. I just do what I think I have to do to get some quality of life and hope to God it all works. I have a lot invested emotionally in my Monday surgery because I believe it has to be the last one for me.

txmarinemom
02-07-2008, 11:32 PM
Trulyaries, you are gonna do *wonderfully* Monday ... I just feel it!

(In fact, I was checking my post-surgical "to-do" list for early March, and there is clearly an entry that reads "Call FeliciaFeliciaFelicia and squeal excitedly 'I KNEW this was going to be the one for you!'" ;-)

You have lots of people pulling for you, hon; just as importantly, you are strong, positive and ready. (Oh, and stubborn ... I forgot stubborn - LOL ... stubborn is gooooood ;-).

Hugs,
Pam

trulyaries
02-08-2008, 12:44 PM
LMAO! Stubborn - that's the ticket!! When people are being kind, they say I am "strong willed" or have "strongly held opinions." When they are really exasperated with me, it's "you are so ******** STUBBORN!!

I AM stubborn and proud of it, if it means that I don't give up in looking for solutions for whatever life throws at me. One of my favorite quotes: "the definition of insanity is doing the same thing over and over and expecting a different result." When I'm stuck on something, I repeat that phrase and it forces me to think outside the box for another approach. Try it - it works! ;)

Sorry - I'm rambling. Must be nerves. Thanks for all of your good thoughts. :)