How do you know when it's time for surgery?

[Brendalee]

Brendalee

Sue,

I guess we are in the same boat. I know these appointments can be a
bit disappointing. We think our curves are bad enough and we are considering surgery, but the Dr. doesn't recommend it. How bad does it need to get? It's a hard decision to make. I always wonder how I'll be in 5 -10 more years. I would need the full fusion also. My first Dr. told me I would be
more disabled with that than I am now. Other people seem to do ok. I know
it would be alot to adjust to, but wouldn't it be better to be straighter, feel
better about yourself and be rid of some of that pain?

My Dr. wanted to see my old xrays. Unfortunately my old Dr. didn't have them
any longer so I could only get the ones from about 6 yrs ago. I know myself
that I have progressed quite a bit over the years. But I guess they still want to
wait and see.

They did tell me that it is not an emergency so that made me feel better.
But if I end up needing the surgery, I would rather have it when I'm a little
younger. I guess we just have to see how it goes. Well keep your chin up!

I would like to hear from anyone who has had a full fusion and how they get
along as far as flexability goes. How does it feel when they lay down, sit, bend, getting dressed etc. That sort of info.

Thanks!
Brenda

[LindaRacine]

Hi Brenda...

The amount of flexibility one has after surgery is based on how much flexibility they had before surgery and the number and location of vertebrae fused.

I'm fused from T4-L3. I can do just about anything a normal person can do, although some things can look and feel very odd. For example, to put on pantyhose (something I never do any more), I have to lay on my back in bed.

If you're going to eventually have to have surgery, than sooner is probably better than later. However, if there's a good chance that you'll be able to avoid surgery altogether, that's definitely reason to wait.

Regards,
Linda

[Irene]

"Waiting"

Hi again Sue and everyone! I agree with Linda's comments 100 percent! The reason I'm glad that I waited is because about 25 years ago a specialist in Chicago (I don't even remember his name!) told me that I needed surgery, but having it would take away much of my flexibility. I sure didn't want that! ~ I needed to be fused from about the middle of my spine all the way down to my tailbone. I'm glad I didn't have it done back then because I was able to roll around and "play" with my four young daughters all the time! ~ (I'm tall and thin, and I used to be extremely flexible!) ~ We leg-wrestled, played tag, I gave them "rides" on my back while I was the "horsie"... etc., "tag, you're it", "Red Light - Green Light"... chasing each other and racing each other... You know what I mean... I can't do any of that today. It breaks my heart that I can't roll around on the floor and play with my wonderful grandchildren. Linda made me laugh when she said she had to lay on the bed to put on pantyhose! How true! Any one would giggle if they saw the way I put on socks and shoes! I had pain before, but my pain after surgery is now entirely different. Now I complain about that "crushing" sensation ("suit of armor" feeling), which is just pressure, actually. ~ I'm sure most of you are sick and tired of hearing me complain about it! ~ I wear a soft brace almost all the time. ...one (and sometimes two) ...those black stretch velcro support belts. I've heard that Walmart provides their employees with them. Mine sure helps me a lot. I guess I've blabbed long enough! You are all such a wonderful support system for me. Thanks a bunch!

[Irene]

"P.S."

I forgot to mention this... I knew it was finally time to have surgery about 4 years ago when I kind of made the decision to commit suicide. That's how much pain I was in. I couldn't stand up for longer than two minutes. I'd drop down to the floor and "squat" to relieve the pain. I simply could not take it anymore. Even though I miss my total flexibility, I sure can breathe good and I can stand up straighter, and I can stand up for much longer periods of time!

[sue821]

Irene

Thank you so much for the posts. Both help to understand the waiting and now its limitations. Basically that's what Dr. Bridwell said - that he wouldn't advise surgery until it got to the point where I couldn't stand or walk for more than 5 minutes. I suppose he had to go to that extreme to make me understand the complexity of the surgery vs. what kind of pain I am in now. The fusion would be from top to bottom so there would be no chance of me rolling around on the floor. I guess we only think about what we know now..and all I know is the pain. On the other hand, you have something to compare as you know the before and after. I appreciate your perspective very much, thank you so much for sharing.

Sue

[Karen Ocker]

soft brace?

Irene:

I was wondering why you still need a brace. I found strengthening the muscles around my torso keeps the "suit of armor" feeling at bay-which I attribute to the muscles getting stiff and atrophied from lack of use. Granted, with my fusion T-4 to sacrum it takes some doing.

A brace will keep those muscles weak.

I recently went on a month long vacation where I spent too much time in the car and not enough exercise. I found the "suit of armor" feeling coming back as well as my scars tightening up. One session with my Pilates instructor and some myofascial release massage gave complete relief. I also got back to my strenuous walks.

At least in my case my theory seems to work.

Karen

[CHRIS WBS]

Sue

Did Dr. DeWald recommend surgery for you? I'm curious what recommendation I will get from Dr. Hammerberg when I see him next month. I have a 74 degree thoracolumbar curve, but for now I have no pain (just occasional achiness). I get relief using a heating paid at night. I don't have previous x-rays for comparison, but it's quite obvious there's been a rapid progression in recent years (menopause). I've lost 2 inches in height and that really bothers me. I cannot afford to lose anymore height. One doctor told me to forget about any surgery if I'm not in pain. And another doctor encouraged me to get other opinions and felt that most doctors would recommend aggressive treatment. I got the feeling he did not want to take me on as a patient.

Sorry to hear you're having so much pain. Have you had any epidural steroid injections?

Chris

[sweetness514]

To Karen:

ITA with you about the soft brace. I wore mine on and off for about one year post op and at that point I decided that it was not helping me anymore after the fusion was mostly healed and I decided to stand and sit without it, and fight the pain, along with exercises such as swimming, wich helped and with time got rid of most of the pressure. I have a question about pilates, or other lower back/abdominal exercises; do you have a description of what they are? I know that's not easy to ask over the internet, but I have tried so many with my PT and I just end up having major back spasms if I lay down on my stomach or even back to do them. Maybe with a ball between my legs? So far only swimming, stretching and walking have helped, but after I get my revision surgery in December, I want to work on the area even more.

[sweetness514]

Time for surgery

I believe that when one is in so much pain that every day things are too much to bare, it is time to get surgery. Or even before that when the body is still young enough to recuperate faster and no need for a more complicated surgery, like anterior posterior. I always say that I don't regret pushing off my surgery to when I was 26, instead of when I was 18 and pain free, but I was still young enough at 26 to have a relatively quicker one(four hours, only posterior), and at that time I was in pain most of the time. I do agree with some who are not enough in pain to get it later on, as the loss of flexibility and complications later on caused by the surgery are not the most fun to deal with.

[sue821]

Chris Wbs

Dr. DeWald told me that he would not let me get to the point of being in extreme pain. I was to do about some PT, then go back with my list of questions for surgery in about 6 weeks. They even had his nurse come in and show me an x-ray of someone with the spinal fusion and what the hardware looks like. After thinking about both appointments, the appointment with Dr. Bridwell was much more informative and they explained things about my back that I didn't know before (that is unless I developed this 3rd curve and the subloxation in the past 9 months).

Just from what Dr. Bridwell said...fixing one curve is a whole lot easier than fixing three, so you never know. I am torn right now...wanting it fixed, but there isn't an easy fix. And...what if this is the worst that I ever would have progressed and I choose to do a full fusion. He said - I am one of those patients that you need a crystal ball for.

Let me know what Dr. Hammerburg says. What is the date for your appointment?

Sue

[Irene]

Great Feedback

I love reading everyone's comments... SO helpful, eh?! ~ Karen, I've been through every kind of exercise program and PT that you can imagine... including Pilates and Yoga and swimming therapy. All of it has been extremely helpful. I'm very skinny and I can feel all that instrumentation inside my body with every move. I've told Dr. Lenke that and he said that I'll eventually get used to the feeling. He also told me that I should go ahead and use my soft brace all that I wanted... Actually I shouldn't call it a "soft brace"... All it really is... is a support belt. It's not a full body "brace". I don't mind wearing it... I'm very strong for being a tall bean pole! My back muscles are strong and my knees are in excellent condition. I can get down on the floor and get up without any assistance and without holding onto a counter or something. The belt makes me feel stronger, more "safe", and well-protected. That, together with my "serotonin" enhancer (Lexapro), has me feeling pretty good these past few weeks! (Thank You, God!) ~

SWEETNESS: GO TO THIS WEBSITE: http://www.spine-health.com/topics/c...pilates01.html

Also, go to http://www.google.com/ ~ and type the word "Pilates" into the "Search" space. There are 7,290,000 sites about Pilates! Pilates is really big in the United Kingdom, but it's really beginning to catch on in the United States. I've learned how to tighten and strengthen muscles I never even knew existed! Good Luck!

[CHRIS WBS]

Sue

My appointment is Dec. 22. If Dr. Hammerberg suggests surgery, I may make an appointment with Dr. Bridwell for a second opinion as well. This is all making a nervous wreck out of me. But this forum is helpful just knowing there are other people facing the same challenge.

Chris

[CHRIS WBS]

Irene

How tall are you? Did you gain any more height following your surgery?

Chris

[sue821]

Chris

That's a good idea. I felt there was a difference between the two. For one...the guy at the front desk in Chicago (DeWald, Hammerberg) could set you off from the get-go. He stood there and argued, telling me that I did not need to go for x-ray after not being there for 3+ years. Dur...I asked him how the Dr. would know how much I had progressed. I finally had to ask for a nurse before he would stop arguing with me. I just about jumped over the counter and choked him. And...if you aren't taking x-rays to Chicago, that is an experience in itself to get x-rays at the facility....really depressing.

I was the first patient to check in at Dr. Bridwell's office, so everyone was still happy, but all in all, I really liked the entire team much better...and I have to say the surroundings in general. I find St. Lukes pretty depressing, but The Center for Advanced Medicine at Barnes campus was new, bright and clean.

I've been going to St. Lukes for over 30 years and it was a breath of fresh air to go to the facility in St. Louis.

[Irene]

Chris, through my entire "adult-hood" I was always 5'91/4"... My spine had lowered my height to 5'8"... After surgery I shot back up to 5'9"! I was thrilled! I don't walk "stooped over" anymore, I can breathe a lot better, and I know I look better... (as long as I have clothes on! hee hee!) ~

Sue, I'm so glad you like the facility at Barnes Hospital! I love it there! You're so right... it's so "new, bright, and clean"! ~