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Kayde
07-13-2011, 06:00 PM
Hello, I am new to the forum but have been reading the posts for quite some time. I am 45 and just now having some issues that have made me think about surgery for correction. I am not quite sure where to start or what to look for in a surgeon. I refused to wear brace as a teenager and until two years ago my curves never progressed even though i was promised by all the doctors it would progress 2 degrees a year. I began having low hormones a couple years ago and developed severe ostiopinia which I discovered last year. I had my curve checked as I do every 3 years and discovered my 49 degree curve was now 71 since the last 3 year check. Prior to this I never changed. That came as quite a shock but that explained the hip pain. I have been taking supplements as I didn't want to take the osteoporosis meds and after 8 months received a normal bone scan much to everyone's surprise. Even though the bones are healthy the curve progression has happened. My regular dr got me a back brace to wear a few hours a day which helps some but has ended up giving me thigh cramps and foot cramps. I am having some difficulty in deciding if the surgery is worth it and how long you really have to be down from a job. I unfortunately don't have the luxury of not working for an extended period of time. I could work from home but unsure how long it would be before I could do that. I have seen Dr Anthony Moreno but feel that maybe I should get a few opinions before I decide. Is there any determining factor on when and who? I am sure e eryone has been afraid that you could end up worse or have more surgery down the road. Just wondering how you get past the fear and worry in order to have such wonderful success stories. The x-rays posted are amazing results and it seems everyone still stays active. I have very good range of motion now and I dont want to lose that. Any advise is welcome. Thanks. Sorry post is so long

Pooka1
07-13-2011, 07:42 PM
Hi and welcome.

I hope adult patients respond to your post. I am just a parent of two kids with scoliosis and can't really address some of your questions.

One I think I might be able to address is the flexibility question post fusion. Where is your curve? Both my daughters had thoracic curves, were fused T4 - L1 and can't notice much difference in flexibility. If your curve is lower then that will matter.

It sounds like your 49* curve held for at least a few decades. There are a few other testimonials here where folks had large curves at or near the surgical range which held for decades.

Your curve then progressed an average of 7* a year for three years, yes? I think that might qualify as "collapsing" as I have seen surgeons use the term. There are testimonials about that. Dr. Hey wrote about one of his patients like that although her spine collapsed from a very sub-surgical range which was amazing. Every surgeon would have told her she was out of the woods but still her spine collapsed. I'll have to search for that blog entry on Dr. Hey's website.

http://drlloydhey.blogspot.com/

Good luck.

Pooka1
07-13-2011, 07:44 PM
Here is another collapsing spine case but it isn't the one I posted to this forum a while back.

http://drlloydhey.blogspot.com/2009/02/47-yo-w-collapsing-lumbar-scoliosis.html

Pooka1
07-13-2011, 07:54 PM
Here is the blog entry I was searching for... collapsing lumbar.

http://drlloydhey.blogspot.com/2007/09/29-yo-woman-with-progressive-scoliosis.html

Can I ask where your curve is? Is it the lumbar?

titaniumed
07-13-2011, 10:03 PM
Kayde

Welcome to the forum.

Making that decision is the toughest decision you will make in your lifetime. It’s the main reason why we all wait so long, we truly are scared to death, every one of us, so your not alone here.

Since there are all these questions in your head, it might not be a bad idea to read David Wolpert’s book “Deep sea tournament fishing in Cabo”. Wait, that’s not the book, sorry...its “Scoliosis Surgery, the Definitive Patients Reference”.
http://www.scoliosis.org/store/books.php

Take your time, keep posting and asking questions. We have a great group here!
Ed

Kayde
07-13-2011, 11:10 PM
I actually have a small lumbar curve less than 25 but the thoracic is what has progressed so quickly which has given me intense right hip and leg pain. The haven't said collapsing but I haven't asked. I know the rib hump is larger now and I am onle 3inches of that touching my right hip. Idk if the rib hump goes away with surgery. I don't regret my lsck of treatment as chiropractic has helped me but as I got older with 5 kids to raise and support that sort of fell by the wayside. Never occurred to me that it could be collapsing. That is something to consider.

Kayde
07-13-2011, 11:46 PM
Not sure about collapsing. The dr had looked at my stays before he met meband though I was still in my 20's. .... Don't I wish because I didn't have any real degeneration. He did say I could have the start of arthritis due to the stress on my spine. I will get the book and see if it is a possibility. How soon after making the decision does it take to get approved for surgery and does anyone know who does the most accurate in the Tampa area or do I need to look outside my state. Texas could be a possible for me as well as oklahoma since I do have some family there. I guess insurance does pay for home health or do you need long term care ins. I am normally very healthy but this shift has caused my difficulty swallowing which has resulted in two esophagus stretches and I recently had a large tumor removed in my right breast which resulted in 80percent of the tissue being removed so affects in the implant are also a concern. I just feel that if I need to do it I should do it while I have a better chance of healing quickly. There is also difference of opinions on how good of shape you should be in- do you go to the gym and get in shape or does that sow down your recovery? Do you feel the rods? What type is best and has less chance of breakage and rust? I have small bones so concerned how many will be used...guess the same questions everyone has. I appreciate everyone's input. I find experience to be more valuable than theory and books.

Pooka1
07-14-2011, 05:26 AM
Something concerns me after reading that last post...

Who did you have checking your curve every three years and who told you your curve was progressing? Experienced orthopedic surgeon specializing in spine or someone else?

Unless the answer is the surgeon then you need to talk with one. They are the only people with relevant training.

Lorz
07-14-2011, 09:49 AM
I agree with Pooka- it is important to have your curves measured by the same Dr., preferably an SRS doctor, over a few years, to really get an accurate picture of progression. If your thoracic curve progressed that much, in 3 years, that would be really unusual. If it did, and continues to progress, that would be a very strong argument for surgery, as your pulmonary function could be compromised as it progresses. A good thing is, you may be able to have mostly the thoracic fused, since your lumbar curve is so small, and that would have a lot less impact on your flexibility.
You mentioned hormones- it seems that many of us have noticed the pain/issues started in the peri/menopause years. I know mine did. I functioned pretty well, with large curves, until I hit 50. It took me 3 years of seeing surgeons, and gathering information, to make a decision. There is no rush. Take your time, see several scoliosis surgeons, and read as much as you can. You will know when the time is right, and you are ready. Good Luck!

Kayde
07-14-2011, 05:40 PM
It has been the same ortho surgeon until this last time because he moved out of state so that's when I found this site and found dr moreno. He was very surprised when I took him all my x-rays going back to when I was 17 and he looked at the measurements. He didn't believe me either said usually it is a slow progression. I told him that I remember asking my husband a few years back if he thought I was getting worse because I felt like I was. Of course he said no. But when the hip pain started a few months before I saw dr moreno I knew it had to be getting worse. Dr moreno is said to be one of the best surgeons in the area for adult surgery but I think I should have more than one opinion. Don't each dr sort of have their own style of correcting the spine? Should I look outside the state of Florida? I'm sure everyone has been concerned about dr choices and recovery long term.

titaniumed
07-14-2011, 08:48 PM
Lynette used Dr Cronen and was happy with him......

http://www.floridamedicalclinic.com/our-physicians/spine-surgery/geoffrey-cronen-md/

http://www.scoliosis.org/forum/showthread.php?10770-Had-my-12-week-post-op-today

Ed

golfnut
07-14-2011, 08:56 PM
Kayde,
Welcome to the fourm. You will get a lot of good information from David Wolpert's book and lots of support, different opinions, answers, etc. from the forum. Take your time in finding the best surgeon possible. I didn't get a second opinion since I had been told the Dr. Lenke is one of the best scoliosis surgeons in the country. I'm sure Linda can give you some names. I'll try to answer some of your questions. I didn't need to go to rehab. or have any home care, however, my husband was able to be here the majority of the time for the first 4 weeks after surgery. I was in good shape for my age (59) prior to surgery but kicked it up a notch during the next 13 months while I waited for surgery. I don't think the wait is usually that long with most surgeons, but the surgeon and I both had conflicts. When I saw Dr. Lenke at age 59, he told me that I could wait one or two years, but not to wait much longer as the recovery time is longer and the results aren't as good. I occasionally think I can feel the top of the rods, but I'm not actually sure if that's what it is that I'm feeling. My fusion is to the sacrum so I will definitely not have the flexibility that I had before the surgery, but I don't think that will prevent me from doing most of the things I enjoy in life after a year. My rib hump is gone and my ribs are no longer practically resting on my hips. I have been fortunate to have had a good correction and a smooth recovery so far.
We'll look forward to your posts.