surgery fear

[gingersnap]

Hello everyone.

I am a 30 yr old female and I have scoliosis. I have two curves 72 degrees and 63 degrees. I need surgery from T-3 to L-4 but I can't bring myself to have it. I do have pain but it is not severe. Mostly its a tiredness type pain. I am educated about scoliosis and I am not scare of surgery itself (I have had 9 different surgeries). Its just this surgery that completely scares me. Actually its not the surgery that scares me...its the possible outcomes, ie more pain after(non-surgical), failed fusion, possible revisions.....

I also have an irrational fear...I realize its irrational...I also know where it comes from ...doesn't mean I can shake the fear.
I am not asking you all to talk me into or out of the surgery..I guess I am just looking for understanding from others that understand scoliosis.

[Cakedec]

Welcome to the forum

We are so glad that you found this forum. It is the best place in the world for those of us with scoliosis, especially when you are considering surgery or other treatments.

Your fears are not irrational; they are normal. We are all terrified at the idea of corrective surgery and the unknown possibilities and outcomes. There are many others like you reading this forum everyday and posting their questions here to share and help each other.

I was also like you about a year ago when I started reading the forum. Since I was a little girl with scoliosis, my parents and I had been told that the surgery was terrible and I'd probably be paralyzed if I did have it. Then, when I sought treatment for the pain as a young adult, I was told that it was too late for surgery and the only treatment was now physical therapy and exercises. These have not done the job however, as my scoliosis has been continuing to progress to where walking and sitting are painful and I have been disabled from working for a year and a half (at age 47).

After reading on this forum, I realized that there are adult scoliosis surgeons and that many adults are being treated and insisted on getting into a specialist who told me that I am definitely a candidate for surgery. Without the knowledge and information I have received from reading this board, there is no way I would have been able to work past the fears to get to the point where I want to get scheduled for surgery.

Of course, in your case, surgery may or may not be in the near future; depending on how fast your curve is progressing; whether you can live with the pain for now; where you are in your life, and if you have the support system to help you out during recovery. Have you tried physical therapy? Many people are greatly helped by stretching and strengthening the muscles in the back, or exercise such as swimming. It takes a big commitment to do the exercises regularly, but this is the only thing that keeps the pain and muscle spasms to a livable level for me. There is a good dvd made for scoliosis by Elise Browning Miller called "Yoga for Scoliosis".

I looked up some past threads (discussion topics) that you can go back to which might be of help in understanding the fears. Here are some you can start with:
"Scared and Not Afraid to admit it".
"Question/Reassurance Needed" (2 pages)
How was your early recovery period...honestly (3 pages)

Just look through the list of thread topics for Adult Patients and read some that look interesting to you. Here is a link to a page that can help you decide if you should have surgery:
http://www.scoliosislinks.com/PreparingforSurgery.htm
A really good book to read is Dave Wolpert's "Scoliosis Surgery; the Definitive Patient's Reference."

I'm sure that others will be along to post and encourage you. Don't be afraid to ask your questions here.

Deb

[Singer]

Hey Gingersnap,

Everybody's scared of this surgery! I'm tentatively scheduled to have it in March of '07, and I absolutely dread it. However, the key for me is choosing a surgeon that has a wonderful reputation. In my case, I chose someone who's very well-known (Dr. Boachie in NYC) with a superb track record. I wouldn't let anyone else do it but him. I would never have known about this guy unless I were reading this Forum, which has been extremely helpful and informative, and full of nice people who have come through the surgery okay.

That being said, I'm still terrified!!!!!

Best wishes,
Chris

[JoAnn5]

Hi gingersnap!! Welcome to the forum... I'm glad you have found this great place to come for advice, support, and encouragement.

Your fears are not irrational, but very understandable. I had the surgery 6 months ago and am doing so much better now. I just kept thinking about the end result and tried not to dwell on the recovery time. It's a big deal, no kidding.... but if you are like me, the residual pain from the surgery is only temporary, and so much better than the constant, no-escape pain from the scoliosis.

We are here to listen and help if we can... Feel free to ask your questions... if we don't know the answers, LindaRacine can do research to head you in the right direction to find them. She's great!

JoAnn

[LindaRacine]

Hi Gingersnap...

Many years ago, I had an obscessive fear of a surgery that I needed, so I know what you're going through. I waited it out for awhile, and the fear eventually lessened considerably.

My recommendation would be to be certain that you've selected a surgeon who has a good outcome record. That's something that's not easily checked. However, if you post your surgeon's name here, you may find others who have opinions.

In general, outcomes from scoliosis surgery are very good. I have links to abstracts for outcome studies here:

http://www.scoliosislinks.com/SurgeryResearch.htm

Regards,
Linda