Scared

[txchic2813]

Hello. My name is Lindsay Jackson and well as you can tell from my title...i'm a little scared. For as long as I can remember my mom has been telling me to stand up straight, she's put me into physical therapy, thinking this would help my posture. But it wasn't until a couple years ago when the school nurse was doing her anual scolosis check when she told me i should see a doctor about my back. In going to the doctor I found out I had very slight scolosis and not to worry much about it. So my mom kept naggin me tellin me to stand up straight,but my response was always, "I cant'" A couple years pass and I found my posture steadily getting worse. We went to another doctor and they advised me to go to a specialist. So my family drove to Scottish Rite Children's Hospital in Dallas only to be diagnoised with severe kyphosis and mild scolosis.They said that since they caught it so late, bracing wouldn't help nor physical therapy. My only choice to be normal was surgery. I was devestated, I just couln't beleive it. All my life i just thought I had bad posture I didn't dream of it being like this. But since I've stopped growing they dont think the curvature would get any worse, it's pure cosmetic they said. After many weeks of thinking about it and researching, i've decided to go ahead with it. My surgery date is November 21 of this year and I'm really scared. I've never had surgery before and I'm terrified of blood and needles. (which i'm sad to say go along with surgery) Two of my friends have had similar surgerys, one of which had it at scottish rite hospital, where i'm having mine. I was wondering if anybody out there has had this kind of posterior surgery using rods, hooks and screws. I just want to know if you think it was worth it for you, because of my nerves i find myself second guessing myself. But dont get me wrong i really want to go through with it, i'm just scared of all the things that come with it. Plz help!

[ANIMAL LOVER12]

Hi Lindsay,

I had surgery about 5 months ago. My surgery was posterior. I have no pain anymore. It was definately worth it. My back is so much straighter than it was before the surgery. I still have a small rib hump, but it's a lot smaller than before surgery.

I used to be terrified of needles, but they don't bother me anymore. I was afraid to donate blood before my surgery because I was afraid of needles, but that was actually really easy for me. The lady put a freezing patch on my arm where the needle would go in and I didn't even feel it go in. I had blood taken when I was in the hospital to, that was just a little pinch, and it didn't hurt. When my IV went in (I was put out by IV) it was just a little pinch. What seemed to help sometimes was if I looked away from the needle, and then took a few deep breaths. It helped me to calm down.

I'm not afraid of blood (I actually watched while I was donating blood, because I thought it was cool, and I watch surgery shows all the time on tv) but if you have to donate blood, just don't watch. Other than that, there really was no blood. My incision drained a bit, but the nurses and doctors dealt with my bandages (my mom did it when I got home) so I didn't have to see any of that.

Good luck!

[marmyte]

hi lindsay

i live in the uk (as you can see) and i had surgery 11 weeks ago. i don't regret doing it and in a way, surgery is the easiest part for the patient because you get anaesthetised and the surgeons get on with their job! recovery is a pretty long road and progress can be slow but it's so worth it in the long run. you don't mention any pain you may be getting but i was certainly in pain before surgery but now, i have nothing. eventually, it means you can get on with your life

all the best, and make sure your family take care of you and that you do absolutely nothing in the first few weeks after surgery

[starchild_81212]

i had a posterior spinal fusion about 4 months and 1 weeks ago. well you really couldnt tell i had scoliosis it didnt bother me and my shoulders and everything was pretty much normal...but my specilist said i needed it because it was progressing at 3-6 degrees every 6 months which is bad and it was up toward my lungs so it was going to start affecting that...i guess it was worth 3 days in the hospital and 1 month without a swimming pool it really wasnt that bad...u have friends to help u through it they've had similar surgerys i had my doctor so u'll be ok hope this helps a bit

[Mary Lou]

Like you, my husband was constantly telling our daughter to pull her shoulders back and stand up straight and she would say "I can't". When I took her into the doctor for her 12 y.o. check-up, the doctor told me he was going to talk to her about her "bad posture" until he checked her for Scoliosis.

Jamie who was 13 at the time, ended up having surgery. That was almost 10 months ago to correct her Kyphoscoliosis. Her Kyphosis before surgery was about 72* and corrected to about 33* and her Scoliosis before surgery was about 46* and corrected to about 14*. I asked her about three days after surgery if she regretted having the surgery, and she told me no. For Jamie, the worst part was over the summer because she wasn't allowed to ride rollercoasters, dive into the pool or ride our 4-wheeler. As for her posture, she has the best posture in the world!

I wish you luck with your surgery and I really don't think you will regret having it done.

Mary Lou

[nikyergen]

Lindsay,
Your situation sounds so similar to our 17 yo daughters. We were so sorry for the years of sit up straight comments. She really did have a problem and we did know it.

Like Jamie, though, she would do it again. The rewards of a beautiful back and no pain outweigh the fear and pain of surgery. I get irritated when the docs say scoliosis and/or kyphosis isn't painful. Baah Humbug on that one. Our daughter doesn't have any pain anymore, an occassional back ache from overdoing, but that's about it.

You won't see any blood. If you are really uptight about needles let the docs and nurses know. They can give you things to help you relax and not really care.

Your care at the Scottish Rite Hospital should be incredible. They are supported by the same men that support the Shrine Hospitals.

Good luck to you and we are praying for you.

Nikki

[LeaEvelyn]

Hello Lindsay,
I'm sure you will do fine with the surgery. Are you having it done at the Scottish Rite Children's hospital? It's a small world, my sons doctor did his sub-specialty training down there, and we live up here in Michigan. My son is now six months post op and feeling great. He said the surgery was worth going through to be straight again. I hope this helps you feel alittle better about it. Good luck with everything.
LeaEvelyn

[javaboy]

Hi Lindsay,
I'm an example of what happens if you don't have the surgery! My kyphoscoliosis wasn't formally detected until I was 27 - by then the bird had flown. Like you, I'd spent a long part of my life being told to 'sit/stand up straight' and being unable to.
My spine itself isn't too bad. I have a natural fusion causing the kyphosis, and it seems to be pretty stable (thank goodness). The problems for me have come from the muscles around my curve. If you walk around for 20+ years not knowing or caring about your curve, your muscles become unbalanced and weak (hence the 'not being able to stand up straight' - your muscles end up too weak to be able to). I ended up with the entire length of my back and neck being too weak to support me. This gave me the following in the long run:
- Inability to sleep at night without having the right support under my neck. I'd fall asleep, only to wake up a few hours later with a very sore neck.
- What I suspect are pinched nerves at the base of my neck (one each side, where my shoulder blades meet the neck) which cause all kinds of awesome migraines and headaches.
- Pretty much constant neck and shoulder pain.
- I've been told to expect the disc at the top of my fusion to blow out around age 50. And to avoid car accidents in the meantime!

It's so far taken a full year of intense physical therapy to start to strengthen my back up and reduce the pain. I'm still weak higher up in my back, neck and shoulders - I suspect that strengthening all of this through PT will take at least another six months of hard work. That should leave me still very weak in comparison to the average person, but at least pain free.

Hope I don't scare the heck out of you or anything! Just to let you know all about what the alternative to surgery would hold... if you can have surgery and it's not too radical or unnecessary, I'd do it.

Hope that helps!
Martin Hughes

[violinprincess3]

hi lindsay

my name is marlana and i had my surgery over 3 years ago when i was 11. i don't know much about my surgery except that it was spinal fusion and i have a titanium rod and screws. to answer your question about if i think it was worth it, it was because my scoliosis was so bad that if the surgery wasn't performed it would start affecting my organs, eventually resulting in other health problems and eventually death. however i didn't have really bad posture and didn't have pain until after the surgery, so i guess i'm backwards :P. i was never afraid of needles because it was my fifth surgery, but blood does creep me out and i didn't want to look at or touch my scar (still really don't) but there's not much you can do about that. since you have friends who have been through similar situations, they can hopefully give you support along with your family so that you can get through this difficult time. if you have any more questions just ask