Surgery Soon

[Jimbo]

Well I went to see my surgeon Dr Angus Gray today and had new x-rays. My spine has progressed from 38L to 45L w/ 30 compensatory thoracic :(

The good news is he will operate on me very soon. I have to go get bending xrays and an updated MRI. The surgeon said he will either do a 4 level lumbar fusion which will bring the curves into the 20 degree range, but he also said if I wanted a better cosmetic correction he will extend it up into the thoracic with a thoracoplasty included.

Not sure what I will do, but my thoughts are I should go all the way and just get it all fixed and get the cosmetic improvemets too.

I am just so so pleased that this guy is going to help me, it is like being given a second shot at life. I just really hope it works, to be pain free would be so brilliant.

I have been thinking about this surgery for years now, and now that I finally have been offered it it really is a bit of a shock. My surgeon is very confident I will obtain a great correction. I just really want to get this done and start recovery now, this condition has really messed my life up :(

[loves to skate]

Hi Jimbo,
I am so glad you have found a surgeon that you are comfortable with. I think you are very smart to get this done while you are still young. You will get a better correction and heal a lot faster than if you wait too long. In the meantime, keep your body as fit as possible and stay strong mentally as well. You will get through this. You will have a lot of people on this Forum pulling for you. My best to you.
Sally

[Jimbo]

Thankyou Sally, that was very kind :)

[JenniferG]

Hi Jimbo. I'm so glad you're going to get your surgery before too long. You sound very much ready for it and you have the back up of lots of knowledge and experience here. As Sally says, get as fit as you can, within the bounds of your pain, eat healthily and you'll do great.

[debbei]

Good for you Jimbo. I know that you've been in pain for quite some time. Be sure to let us know when you have a date.

[titaniumed]

Jimbo

That's great news.

How fast are you progressing? 38 to 45 in how much time?

Ed

[Jimbo]

Jimbo

That's great news.

How fast are you progressing? 38 to 45 in how much time?

Ed

I can't believe it, that was in two years. It really is quite confronting when you are going through increasing curvature. I am just so glad that I live in a time when something can be done about it.

Anyone else who reads this, just a question. How long did you wait untill surgery after being tild that you needed it ?

How are you doin Ed?

[hdugger]

38 to 45 is almost within the margin of error. My 21 year old son, over the course of 4 years of almost or complete skeletal maturity, was measured (in order) with a right thoracic curve of: 47, 57, 52, 59, 55 (and we were told that the 47 to 57 was due to using different vetebrae for the measurement - the 52 (two years ago) is the only one measured by a scoliosis specialist.)

We're considering those measurements stable, although they span a wide range.


I can't believe it, that was in two years. It really is quite confronting when you are going through increasing curvature. I am just so glad that I live in a time when something can be done about it.

Anyone else who reads this, just a question. How long did you wait untill surgery after being tild that you needed it ?

How are you doin Ed?

[Pooka1]

38 to 45 is almost within the margin of error. My 21 year old son, over the course of 4 years of almost or complete skeletal maturity, was measured (in order) with a right thoracic curve of: 47, 57, 52, 59, 55 (and we were told that the 47 to 57 was due to using different vetebrae for the measurement - the 52 (two years ago) is the only one measured by a scoliosis specialist.)

We're considering those measurements stable, although they span a wide range.

Good call. Exactly so as far as can be discerned.

Low fifties. Pam here had a ~50* curve that was stable for at least two decades.

There is always hope.

[titaniumed]

Yes, progressing curves can be an issue.They are difficult to project and predict. The good news is that you will be dealing with this at a much younger age than I and your recovery will happen much faster.

Some of us have waited quite some time for our surgeries. I waited 34 years and progressed to 70 degrees on 2 curves. I really had to get used to major pain episodes through the years, and I did it without drugs. My curves basically remained stable at approx 50 degrees for quite a few years.

My pain days are now over. I can lift heavy objects, sleep on the floor, sit at booths in restaurants etc. At 20 months post, my back muscles are finally settling in. I do experience some fatigue, but that's improving as time passes. Results from surgery take quite some time, you will have to expect this.

I'm doing well. Things would be better if Japanese twins knocked on my door today, or a busload of nymphomaniac cheerleaders showed up. I don't think these things are part of standard surgery recovery protocol and wasn't mentioned in any of the books I've read, but that's ok.

Ed

[hdugger]

Thanks, Pooka. He's not in any pain at the moment, so if he remains stable we're disinclined to operate.

The only issue is that his insurance runs out once he graduates (in two years) so we're trying to peer into the future to see if he *might* progress soon.


Good call. Exactly so as far as can be discerned.

Low fifties. Pam here had a ~50* curve that was stable for at least two decades.

There is always hope.

[Doodles]

Jimbo--
Glad you found a surgeon you feel comfortable with. I was beginning to realize the last few years that I wouldn't have much of a choice but just hadn't taken the time to find a real reputable surgeon for "older" folks until I retired in June '08. I was getting so much worse. I went with my second- opinion doctor but had to wait 6 monthsto get on schedule. My degrees kept climbing. I was 88 at a July appt. and 98 just before surgery we found out recently & lumbar was 65 or 68. I would have loved to have gone sooner I think but I felt most comfortable with this doctor. Good luck with all of the decisions. I know I'm certainly much better for finally making the decision & hope you will feel the same! Janet

[JenniferG]

Ed, it's great that none of your surgeries has removed your sense of humour!

Jimbo, I was told in June last year that I needed the surgery and at first I booked September 16th. Then I chickened out and had to wait, for various reasons, until March 3 this year. But if I'd wanted it straight away, I don't think the wait would have been long.

[Jimbo]

hahaha ed, send one of the Japanese twins my way :P

hdugger - I totally forgot about the curve discrepancies, but either way I am still getting the op :) since my pain and fatigue are increasing over the years, it seems that this is most likey due to an increasing curvature.

I kinda feel like I am going to be made of spare parts. I have a new cornea and will soon have a steel spine ! I just hope there are not too many surprises (health wise) in the near future.

[hdugger]

Yes, that absolutely makes sense. If my son had pain, he'd certainly consider surgery.



hdugger - I totally forgot about the curve discrepancies, but either way I am still getting the op :) since my pain and fatigue are increasing over the years, it seems that this is most likey due to an increasing curvature.

[titaniumed]

Pain is the ultimate surgical catalyst.

Contemplating surgery when young is especially scary. When there isn't any pain involved, it really tugs on your mind.

Since there are no guarantees with scoliosis surgery, or any surgery, its usually a last ditch effort.
People that experience pain that have surgery, have greater odds of pain reduction after their surgeries. People that have surgery that have no pain and end up with increased pain after surgery are the ones the surgeons want to avoid if possible. This is probably why the 40-50 degree cobb minimum was established for having scoliosis surgery. If it was guaranteed, everyone with 10 degree cobbs would just go and get it done.

Everyone who is a candidate for scoli surgery needs to know about post surgical complications. I've had a few myself, but it was no surprise. Surgeons will review some of the complications, but it is IMPOSSIBLE for them to cover all of them. This is why people need to be informed, online, and reviewing these things.

Saggital imbalance is a toughie, there was a post here recently about that subject, and that person didn't know about it. Surgeons have to build the lordotic and kyphotic curves into your spine while dealing with the scoliotic curves in the coronal plane. Its actually an art that surgeons have to master, and sometimes can be off balance. The surgeons try their best, but sometimes these things happen.

It is such a difficult decision to make when your in your 20s and have 40-50 degree curves. You are a candidate for surgery, but then your curves can hold for years and pain can be controlled with various methods. Years ago, it was a little easier to make the decision with surgery being extremely dangerous, but today things have improved quite a bit. Its easier now.

After my many visits with my surgeon while making my decision, he asked me if I was online. In other words, he wanted to know, if I knew, what I was dealing with. Of course I was, just reading little tidbits here and there, It was a question that every Surgeon should ask of their scoli candidates. My first visit with Dr Menmuir was in May 2005. I made my decision October 31st 2007. That's about 29 months. I'm glad I waited, due to the release of BMP. I also have to thank my Chiropractor, Dr Martin Rutherford for his vast knowledge and guidance on the subject. We have discussed the subject of scoliosis for the last 22 years together. We also tried many different things that were helpful in pain control.

I just don't like reading about posties that weren't informed.......
Its quite a bit of material, but I think its necessary.

No Japanese triplets today. Oh well.
Ed

[Jimbo]

Thanks again ed. It is a tough decision to have surgery at any age but I must say it would be more so when you are younger. Waiting is very tempting as new technologies are on their way, but I just can't hold out for them any more. I am in the right place and the right frame of mind to go through this now, and have read very widely and believe my knowledge of the potential complications is sound, but you never really can know it all.

I have much respect for people that can hold out for years and years with pain and progression. Unfortunately I have reached my threshold. It is like being tortured, some people can take it, but others have their breaking point. I have not reached breaking point, but am getting close and that for me is enough of a reason to take a leap of faith :)

Having a very well respected surgeon that oozes confidence is also a big incentive. I suppose in life we all must take some heavy risks and this will be mine.

I find one of the hardest parts though is trying to explain to people what you need to get done and their reactions, often bad and very discouraging. I now only inform people who really need to know.

[Susie*Bee]

Jimbo-- it sounds like you are ready indeed! After watching your postings for quite awhile, it seems like you are well informed (and thanks, Ed, for your post just now-- I also hate it when "posties" don't know about the possible complications/problems) and now that you've found a good match as far as surgeons go, all is set. Isn't it a big relief when you get to that point? Best wishes as you continue with your plans for surgery. It sounds like you've made a wise choice, all things considered. Keep us posted. :) Susie

[CHRIS WBS]

Since there are no guarantees with scoliosis surgery, or any surgery, its usually a last ditch effort.

Waiting for it to become a last ditch effort usually means a bigger surgery (or surgeries), a longer fusion, a harder recovery, and more risk for complications. My surgeon remarked to me while I was in the hospital that he wished he could have treated me when I was younger. Why go through life being deformed when there are skilled and talented surgeons who can correct our deformities?

[titaniumed]

Chris

Risk factor weighs heavily. If there is any chance of failure, do you do something? What are the odds of complications 10 or 20 years down the road? This is a see-saw that can be tipped back and forth for ever.

The younger you are, the more you have to worry about these things. These are things I discussed with my surgeon, but he still told me I should have done it sooner.

Its funny how he wanted to know about my history with scoliosis and what methods I had done for pain control through the years. It seemed like he wanted to make sure that I had explored all options, and was at the end of the road, but still told me I should have done it sooner????

Jimbo, just trying to cover some bases here for you. Just some thoughts for when you "interview your surgeon". It does sound like you are close.

My surgeon still wanted to try a few shots at the end, but I declined due to my pain. I told him that was a temporary solution, and things were not getting any better with twin 70s at age 49. It took me a few visits before he finally said that he would do it. Of course, after my physical.

Hiring your surgeon isn't easy. I liked the fact that Dr Menmuir didn't just say "lets do it tomorrow" He really wanted me to think about things.

Let us know how it goes
Ed

[CHRIS WBS]

Risk factor weighs heavily. If there is any chance of failure, do you do something? What are the odds of complications 10 or 20 years down the road? This is a see-saw that can be tipped back and forth for ever.

You are at greater risk of being maimed or killed in an auto failure every time you get into your car than suffering a major complication from scoliosis surgery. Do you therefore stop driving?

[hdugger]

I don't think that's correct. While the risk of a really serious complication from scoliosis surgery is quite low (I think it's 1 in several thousands) the risk of a really serious complication from a single car trip is much lower (more like 1 in many millions, and probably lower once you factor out those crazy teenage drivers).


You are at greater risk of being maimed or killed in an auto failure every time you get into your car than suffering a major complication from scoliosis surgery. Do you therefore stop driving?

[titaniumed]

Chris
Good point. Everytime you enter your car, you need to be aware of the danger, just like being aware of surgical complications. Driving is serious business.

Surgical complication rates are much higher that auto accidents. I do know that for gall bladder removal, 42% is the magic number. Its also the 2nd most popular surgery performed in North America at approx 750,000 per year. Also, 25 to 30 million people undergo surgeries per year, just shy of 100,000 per day. Those are serious numbers.

http://answers.google.com/answers/threadview/id/759999.html
http://www.ehow.com/about_5254875_gall-bladder-surgery-procedures.html

Its funny, insurance companies look at accidents per state and will have stats on the amount of time in years per accident. Nevada is one of the safest states in that regard, I think its 1 accident per 8 years. If that's the case, I'm due for 4 accidents right now.

Ed

[Vali]

Hi Jimbo,
I went from 50 degrees in June 2008 to 58 degrees in March 2009. I was told to consider surgery within the year due to the fast progression and that was at the end of March 2009. I made my decision in mid April and setthe date for June 1st, as I needed the remainder of April to get work and stuff sorted, then used May as my blood collection month. Between blood collection and debilitating pain, i really had the stuffings knocked out of me. Good luck!

[txmarinemom]

Jimbo,

I'm so glad you've found a doctor you trust, and I can SO relate to living with the pain. I'm glad I did it (not that I *had* to ... which is very different), but I'm also glad I didn't do it earlier.

My back had hurt *ferociously* since I was about 10. Sharon correctly recalled my curve was stable for over 20 years: Realistically, if I'd felt the technology had been there (I didn't), I could have had surgery earlier. I had a lot more choice than people who were progressing, to be sure.

I investigated having surgery when I was 29, and I just wasn't ready to roll the dice. At that point I didn't have all the little bonus issues like discs protruding in the cervical compensatory curve, either. The pain was chronic, but it really hadn't started getting worse like it did later.

The techniques and hardware available today - and, yes ... expanded use of rh-BMP-2, as Ed mentioned - did play heavily into reassuring me my odds were good. My surgeon also played a huge part in my decision - although he never once pushed me toward surgery. In fact, my first visit with him involved x-rays, background info, what he felt were the pros and cons involved with surgery (and I now know they weren't weighted) and a request from him that I read Wolpert's book. He asked me to digest that, and if I thought it was something I wanted to do, schedule another appointment. If he didn't see me again, he wished me well.

That visit was Oct. 9th, 2007.

I scheduled my next appointment several weeks later, and Dec. 5th, 2007 found me back in his office with a million questions. We booked my surgery that day for Feb. 5th, 2008. I spent those 3 months going through a CRAZY to-do list (solo recovery requires a LOT of planning), and I stayed so busy the worry didn't really strike until they wheeled me down the hall to the "starting line". It lasted a split-second, and that was it.

Jimbo, I think you're going to do great, and I tend to agree things will be easier - now and in the long run - if you get it over with vs. waiting. Ditto on the getting in the best pre-op shape possible. Focus on getting your core, arms and legs strong ... but lay off bulking up the back muscles. And don't forget to strrrretttttch! :)

Regards,
Pam

[Jimbo]

Thankyou Pam :)