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View Full Version : Lots and lots of questions!!! Please help!



peachrush7
10-21-2008, 06:13 PM
Hi everyone,
My name is Rebecca, I'm 25, and I live in Orlando FL.
I just found this forum last week and am SO thankful that I stumbled upon it! I have lived with scoli for so long and have never talked to another person who had it, so this has been a revelation for me.
I was diagnosed with scoli when I was 13. I had a 45 and 42 S curve. The docs said I was in the "gray" area of whether I needed surgery or not. We opted to wait and watch. I used the charlston night bending brace which I wore for about 4 years. I was always told that my curves would never get worse after I stopped growing and that scoli didn't cause pain. They also told me my back was basically like a normal back and so I didn't need to be any more careful with it than anyone else. Since there were no changes before I stopped growing I never worried about it.
Fastforward to four years ago, I started to notice a lot of discomfort and pain that I'd never had before and I was convinced one of my shoulders had moved forward. It hurt when I sat and stretching started to make only one leg really really tight. I had always been active and worked out regularly so I thought something was wrong because I had never felt that way before. I went to PT and they told me nothing was wrong I just needed to "stretch more." I couldn't find any PT's who knew much about scoli and since the pain continued to get worse I started seeing Orthos.
Not much was done. They told me it was nothing to worry about and basically gave me the brush off. I decided I must be making a big deal out of nothing and tried to ignore it.
Last May I wasn't able to ignore it anymore. I started having terrible pain all day and night no matter what I did. It ran all the way down my left leg and was so intense I had to quit my job. I went through several orthos who had me do all the injections and pills and PT, and none of it helped. (I had one guy basically just say "live with it" and sent me to the "pain management" docs.) I finally found a great Ortho up at Shands who diagnosed my herniated disc at the L 2-3. They also found my curves had increased to a little over 50 degrees plus or minus.
I had a surgery in october of 2007 to remove the herniated portion of my disc. It seemed to help for a little bit, but my ortho said he was concerned that my scoli was contributing to the pain, but he couldn't be sure till after i recovered completely from the surgery.
Well, the pain has come back almost entirely but my MRI is clean. We've done another round of injections that did nothing at all except make me worse for a few days. I have been to my old ortho who did my 1st surgery, I have been to an ortho in orlando, and a neruosurg. they all said the same thing: one, the pain is being caused by at at least 3 levels or nerve roots, and two, your scoli is most likely causing the pain.
I finally went to a group here who specializes in scoli, and he was very understanding and concerned. He wanted me to do another EMG test, which I had yesterday and I have nerve damage in my thigh coming from the L 2-3.
I am meeting with the surgeon on monday to decide whether we'll do a laminectomy or the whole scoli surgery with the rods etc.
Has anyone had a laminectomy? Can anyone tell me what that is like, how recovery is, and what I should do to prepare.
I would also like advice about the scoli surgery, what it's like, what recovery is like, and what to do to prepare.
Also, has anyone experienced pain like mine? It burns and tingles, aches and "shocks." Sometimes my thigh muscle will twitch. The ache is so deep and constant. The pain starts in my low back and goes all the way over my left butt-cheek, into the hip area and over the thigh. It then comes out down the back of my calf and over the top of my foot. Even my middle toes hurt. I get weakness in my leg where sometimes it just gives out on me. When I sit indian style or on the floor my leg goes to sleep in 2 seconds, and hurts SOO bad when it "wakes up" same thing with sitting too long in the car or at a desk.
I have two more questions that are more curiosity at this point, but one, has anybody been pregnant after the scoli surgery? What was it like, and how was the birth? (My husband and I were planning on starting a family until this pain started, and so now we're waiting.)
Last question, can people wear heels after the scoli surgery? I used to wear heels ALL the time. I love them and they make me feel so feminine. I can't wear anything with the slightest heel at all right now or for the past 2 years, and have the vain wish that I might be able to again one day.
I am staying pretty calm, but I think it's because I've been living with so much pain the last two years that surgery sounds great just because it's an answer. I would appreciate any help, advice, and prayers.
Thanks so much!:o
Rebecca

SandyC
10-21-2008, 06:36 PM
Before you rush into surgery you need to be seen by an Ortho that deals with ADULT scoi patients. Having a laminy is like putting a bandaid on your back, and personally I think not the best way to go with scoli. You really need to get an opinion from someone that does a lot of adult scoli surgeries per year.
Good luck
SandyC
1983 Harrington Rod
2002 Anterior/posterior T4-S1

loves to skate
10-21-2008, 06:52 PM
Hi Rebecca,
Welcome to the forum. You will get lots of help from the people here. I had a laminectomy, but it was part of my fusion surgery, so I don't know what the recovery from that alone might be. I had pain down my leg like you described and it was very disabling. It seems to me that if you just have a laminectomy, you will still have pain down the road and I would think that the best thing to do would be to have the fusion surgery. You are still young and the scoli specialist would be able to get a good correction for you. You should go to the Scoliosis Research Society website (http://www.srs.org/) to check if your Doctor is listed with them and perhaps choose another Doctor on their website to get a second opinion before you let anyone operate on you. Others here will help you out with many of your other questions. I will definitely pray for you.
Sally

augemac
10-21-2008, 11:11 PM
Rebecca,

I will write what I know of my experience of with childbirth. I had my first child in 1995 4 years after my first fusion. That pregnancy went well. No commplications with the surgery but lower back pain was a bit of a issue but not really much until the last couple months. Labor I did naturally with no medications. It was perfectly normal. Now I had my other fusion in 1999 and I had my daughter in 2001. That pregnancy was only 1 1/2 after my second fusion and I had my rods in. With my son I didn't have my rods in. With my daughter well the pregnancy went very normal also. But every pregnancy is different but as far as my back hindering the pregnancy I personally didn't have any complications with my back. I never had a epidural done because my OBGYN Dr advised against it. Now with my daughter in the last two months I was bed written but that was because she wanted out too bad and not because of my back! LOL Now they did give me some pain medicine with her delivery through my IV because they had to induce my labor with her because all of a sudden during delivery my body didn't want to give her up. LOL anyways the pain medicine cut the edge off the pain and then 10 minutes later she had arrived with 4 pushes!! It was quick. Both my kids came out healthy with no complications. Didn't have any problems. I nursed and did well to take care of my kids with my back. I would lay with them instead of hold them all the time. Play with them on the floor and do lots of things to where I didn't go hurting myself with them. I wouldn't pass the blessings my children have give my husband and I. I think everything would be fine. Take care and welcome to the forum. If you got any other questions just ask.
Adrienne (augemac)

peachrush7
10-22-2008, 07:46 PM
I really appreciate all of your thoughts, thank you for all the posts!!
I am seeing an ortho now who treats adult scoli, and he has actually presented to the Scoliosis Research Society. He does a ton of adult procedures a year, and I feel comfortable with him. I have been to so many different kinds of back docs over the years, I have built up a list of them to call for references, so that helps! :)

Sally, did your leg pain go away after the surgery?

It's really good to know what pregnancy after the surgery is like...I am really praying that I get that blessing!
Adrienne, why wouldn't they do the epi? Was it dangerous? How long do you think it's good to wait after the surgery? A year?

thanks again for all the info!

txmarinemom
10-22-2008, 10:26 PM
... Last question, can people wear heels after the scoli surgery? I used to wear heels ALL the time. I love them and they make me feel so feminine. I can't wear anything with the slightest heel at all right now or for the past 2 years, and have the vain wish that I might be able to again one day.

Rebecca,

I'm fused from T4-L1, and I've been back in heels (4"/5" stilletos and 6" + platforms) since 3-4 months post-op. You aren't doomed to flats if you have surgery.

It was a major concern for me too ;-).

Pam

augemac
10-22-2008, 11:12 PM
Rebecca,

The Dr thought it wouldn't be safe to do the epidural after a fusion because yes it could be risker for our spines. I am sure the OBGYN you get will know exactly what to do for you to make sure you are comfortable during labor. Nothing to worry about. Now I didn't consult with my Dr as to when I could get pregnant! If I did ask I have loss of memory now, LOL and could of been told after a year would be fine. But it would be a good question to ask the dr that will do your surgery. Once you have your surgery life will resume after a few months and you can get on planning your family!!

Good luck!

loves to skate
10-23-2008, 04:21 PM
Hi Rebecca,
I still have residual leg pain and my Dr. said it takes up to two years for the nerves to regenerate which is what he says is causing the pain. The pain is not severe like the sciatic pain that I had before the surgery. I take gabapentin for it and it seems to help. I had sciatic pain for almost four years before the surgery and could have ended up with permanent damage to the nerves resulting in weakness in my legs. I feel very fortunate that is not the case. Sally