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View Full Version : Encouragement/what helps you get by?



patty22
10-02-2011, 11:44 AM
Hi all,

I've posted a couple of times on this forum that I'm contemplating surgery. Everyone has been extremely kind and helpful ( except for the one person who pm'ed me saying that I'd be permanently disabled from the surgery - I know that your spine is naturally meant to flex and fusion would get rid of that capability. However my spine is also not supposed to curve 54 degrees to the right!).
In the interim of finding out my next step (2nd opinion scheduled oct 17 with dr. Hey in nc), ive been trying to come to terms with my long term battle with scoliosis. Since I don't really experience any pain, I've usually just ignored the problem and exercised my butt off to keep everything in check. Now that everything is in the forefront, I'm trying to come up with some positive affirmations to keep anxiety and the blues away.
So my question to you all is - what have you done to put everything in perspective? What do you tell yourself? I know it is possible to live a relatively normal life after surgery ( I've seen some of your blog/ pictures) and the vast majority of people have good outcomes (again something I've learned on this forum). What did you do pre-op that helped you the most?
Thanks again everyone for all your support. I appreciate it!

Pooka1
10-02-2011, 11:59 AM
( except for the one person who pm'ed me saying that I'd be permanently disabled from the surgery

That was probably a closet chiro shilling for CLEAR or one of the shills for Schroth we have here on the forum. Though they have no training in surgery or really anything scientific, they will nevertheless expound ignorantly about it.


What did you do pre-op that helped you the most?

First I want to say that just because you have a 54* curve doesn't mean you need surgery. If you have no pain and it is not progressing, I am not sure a surgeon would operate. That said, you would need to get several opinions on what lies ahead if you stay the course in terms of disc damage.

Second, in the run-up to the surgeries my daughters had, we just tried to stay busy and to fill the time with activities. That works very well when you have no choice as was the case for both my daughters. But I have to admit for adults where there is a legitimate choice like in your case, it seems considerably harder.

Good luck with what you decide.

golfnut
10-02-2011, 01:50 PM
Patty,
I had little pain prior to surgery and like you, exercised a great deal, which probably helped keep the pain in check. My curve was 70 degrees and my posture was starting to resemble that of an older lady. Surgery was not recommended to me until I was 59, so it wasn't like I had an option to wait much longer. You are doing the right thing by getting a second opinion about your surgery and options as to whether to have surgery now or later or at all. I definitely had a lot of anxiety prior to surgery, but stayed as busy as possible and kicked up my exercise routine to make sure I was as physically fit as possible. My husband and I even took a week vacation the month before surgery. I tried to focus on all of the positives of the surgery. I also had a great deal of faith in my surgeon and believed he wouldn't have recommended surgery if I didn't need it for quality of life in my later years. Most importantly, people on this forum were instrumental in helping me get through that stressful pre-op time.

JDM555
10-02-2011, 02:30 PM
Well, I had surgery at around 55*, mine was progressing rapidly though, like 10-15* a year. Like others have said, get MANY opinions. Trust me, you don't want to make a single mistake with your spine, you will pay DEARLY for it. Find the best surgeons that have plenty of experience, and get opinions and learn about your back, don't just agree with everything they say. And when you learn, you make the decision you think is right with a surgeon you trust. I had severe pain before my surgery, and I also use to lift weights, but that didn't help the pain, it made it worse in my case.

And I talked to Dr. Hey on the phone before asking for a 2nd opinion, he seems like a very caring, and intelligent doctor. He even said that Sigurd Berven, who is a great surgeon here near me at UCSF that did Linda's spine, was his resident, so he has plenty of experience. You can check out his blog, he posts a lot and it really shows how he cares for his patients. But even with all that, I recommend more opinions. What part of your spine has scoliosis?

patty22
10-02-2011, 03:43 PM
Hi jdm555 my curve as measured from the first surgeon is 54* t6 to l2. He measured some films from 2004 and my curve was stated to be 34* from T9 to L1 but he measured it 39*. I'm definitely seeking lots of opinions since I've followed your case and others and the last thing I want to do is go to someone who is gonna mess up my back. I'm crazy about getting all the information I can and I will definitely not make any decision hastily.
If I don't need surgery I'd be one happy camper but I think I knew this day was coming. I think you just know innately when something is wrong. I told that &$)&$(?!!? Orthopedist back in 2004 that my back was getting worse and he dismissed me saying I've already stopped growing so i couldn't be progressing without even consulting prior X-rays.
My deal now is that I don't want my collapsing thoracic curve to extend further into my lumbar. No matter what dr. Hey says I'll seek one more opinion and then make a decision from there. By the way the first surgeon definitely recommended surgery - it was just a matter of when.

JenniferG
10-02-2011, 04:25 PM
I only had moderate pain before surgery but for me there was little choice. Both curvature and pain were increasing and although I was fearful of the surgery, I was more fearful of the future if I didn't have it.

Getting fit was the best thing I did to help with the nerves. Because my pain wasn't severe, I was able to do this and the fitter I got, the less pain I had, however I knew I couldn't keep up that level of fitness forever and my spine would continue curving no matter how fit I got. So the fitness helped a LOT with the nerves but it also took away the pain during those waiting months.

JDM555
10-02-2011, 04:27 PM
Yeah, T6-L2 is much better than my curve. Stay away from lumbar, if you can even straighten it out by staying at L1 even, it would be better. The farther you go down, the more complications you'll have down the road. My curve was T9-L4, so my surgeon saved a level and risked some unbalancing to happen just to pretend more surgeries down the road. Just make sure you know exactly what you're getting into, and make sure the surgeon is someone you trust, and you KNOW is capable of a successful surgery, you will find that surgeon, trust me. Many people on here find the "right" surgeon, and can agree with me that it's extremely obvious who you want to open you up. I found mine, now just waiting to schedule surgery :D.

If you have no pain like you said, and it's slowly progressing, by all means try to find any way to avoid surgery, it's not bad to have surgery, but without pain, I'd avoid it at all costs. But 54* isn't a small curve, so I think your surgery won't be very serious, it will be straightforward which is good. Good Luck and keep us updated with what you decide.

Marina63
10-02-2011, 04:54 PM
Hi Patty!

I am very much like you in that I had relatively no pain and exercised for 20+ years to keep myself fit, flexible and strong. I found out in January of this year that my curve, which I thought was in the 30s was now 60 and that surgery was imminent. Scared me and I really thought long and hard about the surgery. Now that I have had the surgery, I definitely have many moments that I wish I had not done it. I am much more uncomfortable now than I was before. But the thing I keep having to remind myself of is what would my quality of life be in 5, 10, or even 20 years? My curve was going to continue to worsen and at what point in my life would I find the courage, time and financial resources to have the surgery done if not now?

I am three months post op and 48 years old. It's a difficult surgery at any age and the recovery will be long. But when you think about 6 months or a year of your life (this is what I keep reminding myself of!) in the grand scheme of things, it's just a blip of time.

Best,
Marina

walkingmom
10-02-2011, 11:32 PM
Hi Patty,

Like many others here on the forum, I was a very active tennis plaer prior to my surgery and I believe that those of us who are fit scoli patients think that surgery would never be an issue for us. Seven years ago my curve was measured at 35 degrees and prior to my surgery it had progressed to 60 degrees. Plus I could see that my rib cage was actually beginnning to rotate. I used to only experience thoracic back pain, now my entire back was beginning to ache all of the time and I found that Ibuprofen wasn't helping me anymore.

Like others have said, it is important to go to a scoliosis expert who deals with spinal deformaties all of the time. I consider myself to be blessed because I didn't have to go far to seek out getting an appointment. I had my spinal evaluation at the same time that my now 19 year old son had his 2 year post-op appt in March 2011. I knew alot about the surgery since my son is fused T5-L3. Teens definitely bounce back quicker, but I knew that at my age, I wouldn't be getting more fit. I was concerned too that by waiting, I could jeopardize my chances of even being a surgery candidate at an older age. No, I didn't want this surgery, but the reality was that my curvature was progressing.

Now at 5 most post-op, I am still in the midst of recovery and dealing with those common issues that many face following this type of major surgery. By reading other posts, I remain hopeful though that these pain issues will soon disappear and I can return to a more familiar active lifestyle.

Best of luck to you as you make your decision.
Donna

progress
10-03-2011, 12:03 AM
yes, it's a terrible decision to make. My back was just under needing treatment in my teens, although I suspect I may have been fully grown so it was left. In my teens my degree was in the 30's, I do know that my right hip always stuck out more than the left. This had worsened in the last couple of years and I was noticing a collapsing feeling in my spine when sitting but not significant pain. My family were also horrified in the deterioration (I think I was in denial) 2 years ago I was 48 deg and 7 weeks ago at surgery I was 55 deg. I do know in hospital I thought don't think I could have coped with this in 10 yrs", that was a low point that lasted a couple of days. I was fused T9 to L3. My Dr said waiting would likely result in fusion the the pelvis in the future. He also said that my future quality of life will be better with the surgery ( I had some slippage of discs). When I thought of never having the surgery I would also feel scared of my future and I was starting to wear baggy clothes, not a biggy but the idea of bending more and more over in the future made me feel old and limited. The main decider to go now was convenience, I could have the time off work and in my current job it doesn't matter if I'm only operating at 50% for a while and I don't know if this will be possible in a couple of years. I also want to travel on my time off in future years, and who knows what family dramas will come up that I'm needed for. It's an emotional and a practical decision.
Kelly (progress)

Pooka1
10-03-2011, 06:48 AM
If you have no pain and it is not progressing, I am not sure a surgeon would operate.

Ah sorry I should have checked your signature. You have demonstrated progression. That simplifies the decision somewhat but not completely. You have a time window, perhaps a large one but are concerned with what would be my main concern... staying out of the lumbar.