At the risk of being redundant

[LindaRacine]

Hi Sharon...

Thanks for your very sweet comments.

I honestly hate the thought of undermining a patients confidence in their surgeon, but I want to be sure that you're confident that Dr. Fry can do your surgery. If you have any concern, I'd encourage you to ask him 1) if he was fellowship trained in spinal deformity surgery, and 2) how many adult spinal deformity surgeries he performs each year. Ideally, it would be nice if your surgeon performed 40-50 deformity surgeries a year. If he performs at least 12-15 a year, and your case isn't complicated, than I think you have a decent chance at a good outcome. I think those are probably the two most important things you can ask him. Also, get the names and phone numbers for at least three patients who had similar procedures by Dr. Fry, and call them to ask about their experiences.

If you're not fully confident, I'd encourage you to make at appointment at UCSF. It's not as geographically desirable for you, but at least you can be sure that you're dealing with top notch surgeons who perform a lot of deformity surgeries.

Whatever you decide, best of luck.

Regards,
Linda

[monie]

Hi there.. first off, I'd like to thank everyone for taking time to answer my questions. I do appreciate this very much. Anyway, I do feel much better now... I guess there's nothing left to do but wait till I see my doctor again. I think that's when all the important stuff will be discussed... I meant to ask this the other day, is it a requirement to give blood before the surgery? I'm curious about this now, 'cos the doctor didn't even mention this at all... Do you know how much blood I might have to give? I feel a little better now, knowing that I'd have my blood on reserve if I need it... Isn't it amazing how good and common sense jumps out the window, the minute you start to fret? Just the other night, I'm laying down watching a movie with my boyfriend when all of a sudden, I jump up and go "What if all my blood drains out??? what then?!!"... geez... Thank God for you guys!

[monie]

PS: I meant to ask a question a while back, but just kept forgetting; I'm very rarely comfortable, and I constantly find myself squirming and fidgeting (I'm sure EVERYONE here can relate). Here's my question: Sometimes, I get this feeling in my back like it needs a good crack... I usually lay face down on a flat surface (usually my bed), and have my boyfriend push very firmly and swiftly.. sometimes I get a crack, but most times I don't... Is this a good or bad thing? It hurts a lot, but sometimes I swear I get a couple of minutes of comfort after it cracks... what do you guys think? To crack or not to crack? I haven't done this lately, but I wanted your opinions?

[LindaRacine]

Hi Monie...

I think most of us have been asked to donate blood before surgery. My surgeon wanted 8 units. (I was only able to give 7.) In The Scoliosis Sourcebook, Dr. Michael Neuwirth writes: I typically ask my patients to donate two units of blood for a routine anterior or posterior procedure. If the patient needs a longer fusion and the operation will therefore involve greater blood loss, I may ask for three of four units. If the patient will be undergoing complicated front and back surgery, I ask for six units of blood.

I think I know just want you mean about feeling the need for your back to be cracked. I have that feeling in my neck quite often. Luckily (I hope), I'm almost always able to crack my neck to relieve the feeling. And, before my surgery, I felt it quite often in my upper back. Usually, a chiropractic adjustment did the trick. I have no idea if it's a good or bad thing to actually facilitate the crack. I'm guessing that most physicians would tell you that it might lead to arthritic changes, but that most chiropractors would tell you that it's good.

Regards,
Linda

[suejeryl]

hi, sharon...before my surgery there were no plans for me to go to rehab. however, my surgery didn't go exactly as planned in that i ended up in intensive care for a week. at that point i was ready to move to a "regular" floor in the hospital, but the insurance company didn't want to pay for anymore acute care. my surgeon arranged to have me discharged from the hospital and moved to the rehab wing because i was in no shape to come home! at that point, the hospital began to request approval from the insurance company for as many days as they could get, just to give me time to recover at my own pace. as it happened, i did not need or use as many days as were approved. so the moral to the story is that your dr. may be giving you his "conservative" estimate of how much time you'll need in rehab...

[susannajon]

Hi monie,

I'm a little late jumping in here, but better late than never, huh? My 13 year old daughter just had surgery, and her curves sound pretty close to yours. She had a 40 degree curve top, and a 70 degree curve bottom. I totally understand how scared you must be feeling. When you first find out, it's totally overwhelming.

I'll try to answer your questions one-by-one as best I can:

How much pain after the surgery? The pain is pretty impressive, something like being hit by a bus, but the hospital will give you lots and lots of excellent drugs. You will have a pain pump so you can give yourself little doses when you need it, and if that's not working, the doctor can give you a little extra shot to get your pain level back down. Your doctors will not let the pain get unbearable.

Surgery from the front or back or both? Will they cut your chest open? One thing you won't know until you meet with your surgeon is whether you have any damage to your spinal structures, and whether or not both curves are "structural" meaning stiff, or if one is "compensatory" meaning flexible and might not need to be fused to fix it. This will determine how much of your spine needs to be fused, whether you will have one operation or two, and how long your recovery might be. I am looking forward to hearing back from you once you see the doctor! My daughter was lucky in that she had one surgery, anterior, that lasted about 4 1/2 hours, and she was only fused T11 to L3 even though the original curves stretched from T3 to L4. As far as the chest thing, I have never heard of anyone getting the front of their chest cut. My daughter's scar goes down her side, from about 3 inches below her armpit and curves around to about 2 inches to the left of her belly button. You can barely see it when her arm is down.

Will you be taller? Some people with very long fusions don't gain any height, but my daughter gained three inches and was totally thrilled.

Is 6 weeks off enough of a break? I would wait to go back to school full time after the winter break. I don't think you're going to have the stamina at 6 weeks for full time school. My daughter at 7 weeks just started half days at school, and she is wiped out.

The boob thing? Nope, you're stuck with uneven boobs. Victoria's Secret has this great bra with adjustable cups. Might be a good option for you. The other option is an implant.

Will the pain stop? That's a really tough question. Everybody is different. Some will tell you their pain was totally eliminated. Some will say they traded one pain for another. I really hope you're one of the lucky ones.

How long after it was discovered did we have surgery, and what type of pre-op testing? My daughter has known for some time about her scoliosis, but she had surgery three months after we picked a surgeon. The pre-op testing included standing x-rays and bending x-rays, MRI, pulminary function testing, echocardiagram and EKG. She had some blood work done and a physical exam the week before surgery. She gave one unit of her own blood.

Last, cracking the back... I wouldn't let my boyfriend do it. I would suggest a trip to a good chiropractor, or get a massage to release those muscles.

Good luck to you monie!!!

[Frankie]

Hi:

First let me say, that I have had numerous scoliosis surgeries in my lifetime, and believe me they have come A LONG WAY over the past several years. You will probably be up and around quickly than you imagine and your physical pain will get less and less each day. No, it will not be unbearable, in fact, "physical pain" is something that our minds actually do not remember after it is gone. So there is a good chance that by the time you get out of the hospital, you only be a little uncomfortable but manageable with medication. I can almost assure you, YOU WILL BE GREAT! :-)... "Don't worry, BE HAPPY!"

I myself have been a professional entertainer my entire life and live in Las Vegas. But my scoliosis compared to what you are going through is extremely, extremely severe, and I myself am hoping to find a revision scoliosis surgeon for my own situation. If you get a chance to check out my web site www.FrankieBush.net and go to the Bio page you will be able to see several video clips just to give you an idea of what I'm talking about.

I have continued to work after many different operations after only about eight weeks of recovery. However, if there are complications, which can be minor or severe that can change things drastically. I have been in both situations. This is why I feel comfortable in telling you that YOU WILL BE GREAT!

Since I am a male I really do not know how to answer your breast, uneven question :-)... However, "don't sweat the small stuff!" Like I said, I live in Las Vegas, fixing breast is something that is quite easy to do compared to scoliosis surgery :-)... But after your surgery please let me know, because now I'm curious :-)... But Seriously, really be sure to get a second opinion, or third. Make sure you ask yourself is the pain that you are having now truly something you cannot live with without surgery? Ultimately some of these decisions, all of the decisions will be yours.

Take care of yourself, YOU ARE GOING TO HAVE A GREAT FUTURE! Sincerely, Frankie

[monie]

Pain

Hi everyone, I was wondering if you guys would know what to do about back pain. Like I previously posted, I have two curves; (upper, 70 and lower, 50) and my back seems to ache incessantly. I have found to my dismay, that it has become physically impossible for me to be comfortable. I'm constantly squirming, moving, stretching, or flexing. I've tired of vicodins, percossets, and whatever other muscle relaxers that my doctor would prescribe me. All they do is make me feel sick, itchy, and drowsy (or sometimes, alarmingly hyper). I have tried rearranging my bedroom furniture (so I can lay in a different position), taking long baths, long hot showers, stretching, cracking, laying down on the floor and asking my four year old son to sit on my back (actually hearing myself say that now, I realize how dumb that might have been... I was desperate), sometimes I kneel down, and stretch forward until my forehead touches the floor... This provides some comfort, but nothing significant. I feel better only for about 20 mins.
I was hoping that someone has tried something that helped? I've tried the warm compress, the hot water bottle, and even ben-gay. I'm honestly just tired of this pain. It NEVER fully goes away.. it only subsides or intensifies (depending on what I'm doing or what I've done). Please don't feel like what you tried "might not work", or is "unconventional"... I'll try ANYTHING. I'll be looking forward to your posts... Thank you guys so much.

[LindaRacine]

Hi Monie...

There are a lot of things you can try... physical therapy or yoga to name a few. Whatever you try, you may have to stick with it for the rest of your life, so my recommendation would be to find something that doesn't take a lot of time, and something you can do on your own. Until about 6 months ago, I did 2-3 physical therapy exercises about 5 times a week. They only took me about 5 minutes, so it wasn't a huge commitment. I worked with a physical therapist for quite awhile to find just the right exercises for me.

If I hadn't already had surgery, I'd probably try this first:

http://www.yogaforscoliosis.com

Regards,
Linda

[lrmb]

Hi Monie, Sorry to hear you are in constant pain. I can relate to that!

You may have tried this already, but very low-level antidepressants cut my pain in half most of the time (amitryptilene, one of the brands is Elavil). It is an old drug but worked for me where others didn't.

I also tried meditation, which was horrible at first (all I could think about was the pain!) but after a while it got so that I would only have to lie down and start the practice and the pain would seem to subside. The type of meditation was "mindfulness meditation," you can get classes and tapes (I can recommend a book and tape if you would like).

The other thing that helped me was Rolfing, this is a gentle hands-on technique that works to loosen up connective tissue and muscles.

Let me know if I can do anything else or if you want to PM. I hope you find something to give you some relief soon! Laura

[Theresa]

Hey Monie, I have used the cold gel packs. You can get a pretty large one at the drugstore. Also try laying down with pillows under the upper part of your legs. Good Luck.

[Frankie]

I wish I could be more help to you, but at least maybe I

Just maybe by viewing my web site you know that they have come a long way since I first had surgery, www.FrankieBush.net I wish you all the best as there are several that have helped me on this web site.

Sincerely Frankie