New and would like some advice

[RiRi]

Hello

My name is Maria and I am new to this forum. I love reading all the stories, and I can't believe their are soo many people out there with scoliosis.

I am 40 yrs old and was diagnosed with scoliosis at the age of 12. I wore the Milwalkee Brace for 2 years and I also saw many chiropractors. Throughout all these years I never had pain, even when I was pregnant with my children, who are now 14 and 10 yrs old.

I started to experience pain in my lower back and in my legs in Sept 2005. I followed up with several drs. and I was told that I have degenerative disc disease. I would need two surgeries (anterior and posterior). I will need to be in yhe hospital for 10 days, with plenty of rehab afterwards.

The Dr. that I am seeing is Dr. Michael Neuwirth from Beth Israel, N.Y. He wanted me to have surgery July of this year, but I was afraid that it was too close to September and I wouldn't be emotionally or physically ready for when my children go back to school. I am also very very scared to have this surgery. I keep saying that I want to have it in June of 2007, but I have yet to schedule it. I guess I am procrastinating, aren't I? Is this normal? I feel confused, but when I read these stories it gives me a lot of encouragement.

My familiy is very worried. They think it is a very complicated surgery, with a lot of risks(paralysis). Some family members (parents) don't want me to go through with this. They think I should wait. Wait for what? I don't know!!!!!
They tell me that there is no guarantee that I will be pain free, and that I will be in more pain after the surgery, and that i will regret it afterwards.
My husband and one of my brothers feel that I should have had it done already or have it done ASAP. Am I wrong for waiting till June 2007?

So if someone has had a similar experience and has felt the same way, can you help me with some suggestions and advice?

Thanks
Maria

70 degree lumbar curve from T12 - L4
40 degree thoracic curve fromT5 - 11

Dr. Michael Neuwirth
Beth Israel Spine Institute
N.Y.,N.Y.

[Singer]

Hi Maria,

You've got lots of company -- like me. I also keep saying I'm "having" the surgery in May or June of '07 and have yet to schedule it. I'm going to bite the bullet and schedule it the next time I see my doctor, though, in August. Of course this surgery is a terrifying prospect for everyone concerned, especially one's family. I'm 51 with a 70-deg. thoracolumbar curve and also just started experiencing more pain, including in my legs, this past year. I'm also shrinking at a pretty good clip. I'm waiting to have it done because I just couldn't prepare myself mentally to do it any sooner. It's a very hard thing to face! -- but so many people have done it, and come out okay.

Your doctor is quite well-known -- you can do a search on his name and get lots of comments from others on this forum.

Keep us posted,
Chris

[dawney]

Hi Maria
I am 38 with a 55 degree lumbar curve. I am getting surgery in five weeks. I have made the decision because my back pain is running my life. I also have degenerative dis disease as well as herniations and stenosis add a little arthritis in there also. I basically ignored my pain for about 15 years although I knew it was going to come back to bite me. Last summer my pain intensified dramatically which led me to this decision. I hope this forum gives you as much knowledge as well as strength and courage that it has given me. Everytime someone comes back after their surgery I feel stronger. I hope that I will be able to do the same for others.

[Shari]

Hi Maria,

This is a decision you must make for yourself. It is not only a difficult decision to make, it's a difficult surgery to go through. I think there is great concern with any extreme medical procedure.

For me it was the question of how I wanted to live the rest of my life.

There are many of us here that have gone through what you are contemplating successfully, and none of us are going to say it was a walk in the park. But when you consider the options, it just may be worth it.

It's a very scary thing to even consider, and I have had a rough recovery. But if you ask me if it was worth it, I would have to say yes!!!

The one thing I have to stress is, you have to find the right doctor. And only your heart can tell you that!!!

[Wakatie]

Hi Maria! It must be so hard for you to have such conflicting advice from different people - a surgeon telling you to have the surgery, some family members telling you to wait, others telling you to do it now. Scoliosis is one of those conditions that most people don't understand. There is a lot of misinformation out there. Everything has risks - driving a car - and while it's good to be informed, I don't think anyone should let the risks of neurologial damage keep them from having this surgery. If you and your surgeon think it is necessary, that is very important. Michael Neuwirth even says in his book the same thing. Good luck!

[CHRIS WBS]

Hi Maria,

I know exactly what you're feeling. At 57 I have similar curves as you. However, other than a bad spell I had a year ago, I don't really have the pain that I keep reading about in these posts. And that's why it's even harder to make a decision about surgery. I will be going to my first scoliosis support group meeting in a couple of weeks, and perhaps that will give me a better perspective.

I hope you've read Dr. Neuwirth's book. I think it will put your mind at ease with regard to the risks of this surgery. He states in his book that this surgery is reliable and safe. Nonetheless, it is big surgery with a long recuperative period.

Good luck with your decision.

Chris

[mariya]

Hi Chris,

My name is also Mariya and I was just wondering about the book that you mentioned in you post to Maria. Can you tell me the name of it. I am also considering having surgery soon and worry about the possibility of the risks associated with this type of surgery. So it would be nice to read somthing on the topic.

By the way, do you know this doctor and have you heard a lot about him? I have a great specialist that I am going to see for the 2nd time but maybe I'll see this doctor for another opinion. I would like to have the best surgeon outhere (hope you know what I mean) and it would be great to find one.

Thanks!!!

Mariya

[jsully]

Hi Maria,
Im 32 and am also waiting till May 07'. I plan on scheduling next week when I see the DR. Hoping they can arrange a date that far in advance! I am waiting simply because I will have more help then. My mom works on a school bus and usually takes a summer job. That's going to be me, my home and my family (I have 2 boys 2 & 3)! I was going to have it in October after I had my short term disability policy for 1 year (prexisting condition). After reading about everyone's recoveries decided to wait so I could have more help. I thought I could just send the kids to daycare FT instead of PT but now I realize I will need more help around the house and possibly taking care of myself for a little while.
jsully

[RiRi]

Hi Chris

Yes, I did read Dr. Neuwirth's book. I found it very informative and I feel pretty confident with Dr. Neuwirth doing the surgery. I had gone for 3 opinions and I felt most comfortable with him. Now to just schedule my surgery!

Regards

Maria

[RiRi]

Hi Mariya

I know you had asked Chris for the name of the book, but since I was posting I thought I would give it to you.

"The Scoliosis Sourcebook" by Michael Neuwirth and Kevin Osborn

I found out so many things about scoliosis and the surgery. I had so many questions (42 to be exact), that when I saw him the 2nd time (after I read his book),he answered all 42 questions. He mad me feel so comfortable and confident after I left his office.

[jsully]

Thats awesome, sounds like a great doc!
jsully

[cathydownunder]

HI Maria.
Like you I had 2 normal pregnancies (my kids are now 21 and 24) with no back pain. Actually I didn't have any real scoli pain at all in the last 30 years since I was diagnosed at age 15. I only have a 35 degree curve which never progressed though.
In the last 18 months I developed severe lumbar and leg pain and like you was diagnosed with DDD at 2 levels, L3/4 and L4/5.
3 1/2 weeks ago I had a 1 level fusion and an artificial disc replacement specifically to treat the DDD. It was decided not to try and correct the curve as it isn't very bad. I know your curve is much worse but I just wanted to let you know that it may not be your scoli causing the pain but more than likely your DDD. A discogram can confirm this.
I can't advise on what surgery you should have or when but I wish you the best of luck.
Cathy