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kerrik
09-21-2007, 06:25 PM
Hey All,

I have been reading your posts for weeks and finally got signed on. I've had scoliosis since age 12 and wore low profile brace till age 16, though not compliant with 23 hours, only wore it at night. Curve then was 38 degrees. Mom says last x-rays as a teen showed curve was 28 degrees. Didn't have xrays until after second child was born in 1996 when pulled back out lifting stroller. At that time curve was 32 degrees. Still feeling pretty good, not a lot of pain. After third child born in 2000, noticed rib hump on back and protruding rib in front. Went to spine specialist at HSS in NY. He told me I had a 52 degree curve. Scheduled surgery with him for July 2000, but preoperative testing chest x-ray showed pneumonia and surgery was cancelled. Well, when you have a baby and two others in school, life got in the way, but pain progressed and I went back to Dr. Goodwin, who then recommended me to Dr. Boachie. I first saw Dr. Boachie in 2003, and curve progressed to 57 degrees. He recommended surgery then, but this time I chickened out.

Well, here it is 2007 and I saw Dr. Boachie again in March, who measured and now I have a curve measuring 63 degrees. :eek: I am in constant pain and nothing helps anymore. I am scheduled to have surgery on November 27, 2007 and after reading all the posts, feel confident that I won't back out this time. Hearing all your experiences has strengthened my resolve to get through this and now I know I am not alone, thanks to all your honest posts and words of encouragement to each other. So if you all can keep all the info coming, I'm starting to prepare mentally now. Any and all advise is welcomed.

Kerri K
age 40
A/P Surgery T6 or 8 to L5/sacrum?? November 27, 2007 Dr. Boachie, HSS< NY

Christine84
09-21-2007, 08:06 PM
Kerri,

Welcome. I hope you are able to find a lot of support from this forum. It sounds like you have been through a lot. Having to make the decision about whether or not you are going to have surgery is scary. But I commend you for finding the strength to do so.

Right now I would say one of the most important things to prepare is a schedule of when people will visit you at the hospital and once you are home. Because recovery is long it is a good idea to make sure you will have human contact long after surgery. It can become very lonely if you are by yourself for long periods of time. DVD's are also a must. I know I didn't have mental energy for a little while after my surgery to read. I think this is also a good place to prepare yourself mentally and emotionally. Being able to read about others experiences will help prepare you, and give you an idea of what to expect. Hope this helps.

-Christine

Heathmoose
09-21-2007, 09:46 PM
Hi Kerri. I read your post and noticed how long you have dealt with scoliosis. Like yourself, I wore a brace as a teen and throughout my early adulthood, my curve just kept progressing and I was in a lot of pain as well. My back even hurt when lying down in bed.

The decision to have surgery is a big step, so just the fact that you have booked your date is an accomplishment! I had the anterior/posterior surgery and I'm fused from T-11 to L-5. My severe curve was in the lumbar section of my spine. There are plenty of us on the forum who went though this, so you've found the right place to ask questions! Nobody wants to have to go through this, but think of it as a spinal makeover...you'll be straighter and maybe even taller!

Keep us posted!
Heather

crepehanger
09-22-2007, 11:16 AM
If you're like me, you just hoped if you ignored the scoliosis, it might go away. But the curves keep on getting worse,as you see. I think "average" is what, 1 degree a year? Mine doubled that rate after I took a very physically demanding job. It is a helluva surgery and recovery, but you have to stop that progression. And, you have a legendary surgical team. Congratulations on taking that first BIG step and scheduling surgery. You'll find the encouragement here to make it through. best wishes... Lisa

vndy
09-22-2007, 12:53 PM
I'm also new here and asked about preparing mentally and physically, and got some wonderful answers (see the recent thread: new here - preparing for surgery). I think preparing mentally seems to be the hardest part - for me, I'm trying to do yoga regularly, and talk to close friends who can be understanding. My surgery is just a few days after yours (12/3), so I'm on a similar time line. While close friends and family are scheduling time in December to be with me, I don't think I'm going to schedule other visitors until closer to the date. I'll also worry about buying things the month before. For now, I'm trying to in the best possibly shape, both mentally and physically, to endure the surgery and recovery! Best of luck, and keep us posted!

Janet
09-22-2007, 02:24 PM
Kerri-
Welcome to this forum - the resources found here are awesome. I first learned 4 years ago that I, as an older person, could have surgery to correct the kyphosis - never treated - and compensatory scoliosis. I took me several years to research, read the posts on this forum many many times, consult w/ surgeons, give myself permission and take the time off from a busy schedule, to go ahead with surgery. I am 1 week after you, with Dr. B., so we likely will cross paths @ HSS. Do you know how long you will be hospitalized? Dr. B told me 10 days, then 10 or more at rehab.

My biggest concern is how long it might be before I can generate enough income to pay the bills - I am self-employed and work from my home office, so I hope I can resume working part-time at 2 months post-op. But I have decided that taking care of my body is the top priority. I am not taking on any new clients, and am wrapping up work on the existing ones. I am cleaning out my house like a crazy person, donating much of my clothes, old furniture I never really liked, etc. I already feel rejuvenated.

I can't offer you much in terms of practical advice, but I do wish you the very best.

Feel free to PM me.

Janet

kerrik
09-22-2007, 04:00 PM
Thanks to all for your words of encouragement. In answer to some questions, Janet, Dr. Boachie told me ten days (dec 7) and then rehab for another 10. I live on Long Island so not sure yet where that will be. I also work from home and am self-employed (medical transcription). I have a few employees that work for me and one of them is taking a week of vacation time from her "real", full time job to do my work full time for the week, which gives a little less to worry about. Dr. B told me since I will not be able to do much else around the house for awhile, he thought I might be back to work in 3-4 weeks. But what ever it is, we'll deal with it.

I, too, am cleaning house. Ordered a new and hopefully more comfortable bed. Organized clothes into what I might be able to wear, etc. Just nesting guess.

I already read the books (Scoliosis surgery Definitive guide and Prepare for surgery, heal faster) and am passing them around to family members. I was told not to let kids see me in hospital, because it is too overwhelming for them. They are a little upset about that now, any suggestions? They are 17, 11 and 7.

Heather, when was your surgery? My fusion will be a little longer than yours in the thoracic spine. How is your mobility? I like to exercise and am addicted to Spin and Pilates. They say I will eventually be able to do that. (My husband loves snowmobiling and they said that would come after a year post-op?) They are hoping to only fuse to L5, but because it rotates, he said there is a chance it might have to be to the sacrum, but he will make that decision once he is in there. I don't want to go back in a couple of years to do that last level and discussed that with him and he understood that.

Is anyone actually taller? He told me up to 2". I've lost about 1 1/2" since 2003.

Again, thanks to all for all your wisdom and advise.

Kerri

sccrm08
09-22-2007, 05:53 PM
Kerri,

I grew 2 inches having surgery last May!!! I was so excited to now have a waist.

You are probably wise to not have your younger two kids see you at least the first few days in the hospital. I've had 4 surgeries in 18 months and with the last one for scoliosis my 14 year old insisted she did not want to come to the hospital again to see me. We told her that was fine and it was her decesion to make. On the day of surgery she decided she wanted to come up and see me. Her 21 year old sister brought her up and they waited the last several hours with the others. My husband and 19 year old daughter came in first and then my sister in law and 21 year old daughter came in. Needless to say I was in such bad shape they decided the 14 year old could not go in and told her it was not a good idea. I had a very rough time in recovery and ICU for the next two days. They never did let her see me in the hospital (10 days), which was wise. But when I got home she took wonderful care of me. From the day of surgery until late August. (3months) my family waited on me hand and foot and I was never left alone. This surgery is tough and I could not have done it with out their support.

I wish you the best of luck with your upcoming surgery. I still have a long way to go with the recovery and getting my strength back, but it is well worth the outcome.

Singer
09-23-2007, 11:34 AM
Hi Kerri,

I gained an inch after surgery -- would've gained more but I had three discs removed so that held back the height a bit.

I would strongly advise you not to let your kids see you in the hospital. I had surgery on a Tuesday and on that following Friday I forced myself to make a cheerful phone call to my 11-year-old daughter, which helped ease her worries about me. Shhe didn't see me until I was in rehab, about 12 days after surgery, when I had a little makeup on and had washed my hair. Even then she was a bit freaked out. But I know I looked like the wrath of God in the hospital and even scared the bejesus out of my husband !!!!

Cakedec
09-23-2007, 12:22 PM
My kids did not come up to see me until 5 days post-op. By then, I was looking forward to seeing them and could get up and walk a bit--slowly--which impressed them a lot. Adult friends had come up the night before to see me but one hour was about as long as you want to visit.

Deb
posterior surgery 7/24/06
for T72, L77 s curve
T5-L5
50% correction