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loves to skate
04-29-2009, 05:42 PM
Channel 5 in Boston did a story on scoliosis this evening. For anyone interested, here is the link. http://www.thebostonchannel.com/health/19324997/detail.html. They will finish the story tomorrow evening.
Sally

Qikdraw
04-29-2009, 06:02 PM
Wow. I donno whats on that page but my IE keeps crashing trying to load it. :( (my computer has problems)

I'll try it on my wife's computer instead. :)

*edit* Watched it. Very interesting. Can you please post the link for tomorrows segment when it comes up? :)

Pooka1
04-29-2009, 06:07 PM
So she went from a "stable" 24* at maturity to an unstable 54* on the table.

Our surgeon says that only 5% of people with sub-surgical curve (<50*) at maturity ever have progression later in life.

If true, this 5% seems to be over-represented in this sandbox.

My one daughter is 36* - 40* now. Make me wonder if she has any chance whatsoever of avoiding surgery later in life due to progression or pain from other scoliosis complications despite what our surgeon says.

debbei
04-29-2009, 06:58 PM
I'd like to see the 2nd piece tomorrow too Sharon. She reminded me of myself, getting worse and not expecting it. She's right--when they describe the surgery to you the first time you think the Dr.'s are just NUTS.

hope404
04-29-2009, 11:18 PM
loves to skate,
Thanks for posting that ...look forward to the second half tomorrow.

I wonder if the hormonal changes of pregnancy caused her to start slowly increasing????

I worry about that happening in my daughter's case.

debbei
04-30-2009, 05:03 AM
loves to skate,
I wonder if the hormonal changes of pregnancy caused her to start slowly increasing????


Hope,

In my non-professional opinion, I believe that's what happened in my case. I do remember after giving birth to each of my 3 kids having the WORST backache of my life; the pain was so bad it was worse than the childbirth pain. Again (in my non-medical opinion), that's when my back progressed the worst. If I had to do it again, would I? Probably, but it would have been nice to know what to expect.

loves to skate
04-30-2009, 10:23 AM
Watched it. Very interesting. Can you please post the link for tomorrows segment when it comes up? :)

I absolutely will post the next segment.

Sally

CHRIS WBS
04-30-2009, 11:24 AM
Thanks for posting this, Sally. Any scoliosis story that Iíve seen covered by the media focused on adolescents. Itís educational and informative to show what can be done for the adult patient.

loris
04-30-2009, 03:27 PM
Thank you so much for posting this. Since I am just at the starting point of discussing with my doctor what my surgery will be like this gives me more questions I can ask. I can't wait to see the rest of the story.
Lori

theizzard
04-30-2009, 04:31 PM
Thanks for posting this Sally. As someone said, it's nice to see a scoliosis story on adults as they usually feature children. As an aside, I had my ct/myelogram done yesterday at St. Luke's in Bethlehem. The doctor who performed it was just the cat's meow. He was amazing, kind, gentle and I believe he was so kind and caring because his 15 year old daughter had major scoliosis surgery done 2 years ago so he knew all about it from his daughter. Usually people see the hardware and don't know how to react. I didn't feel it when he located the spot that was able to receive the syringe and then the dye. He had me upside down with my head on the floor. It was an unusual experience and I have had 2 others before this one.
avis

loves to skate
04-30-2009, 09:20 PM
Here is the link for the second half of the scoliosis story. http://www.thebostonchannel.com/health/19333350/detail.html
Avis, I'm glad you had a good experience with your ct/myelogram.
Take care everyone. Sally

titaniumed
04-30-2009, 10:07 PM
Thx Sally

It helps to have the awareness delivered even if its a short segment.

Her statement, "Waking up in debilitating pain is no way to lead your life" is something we think about often................

Thank you Rhonda Mann!
Ed

debbei
05-01-2009, 01:39 AM
Sally,

what a wonderful story; it brought tears to my eyes. We should bookmark this and point all new adult members to watch this story. My favorite line is when she says 'it's not about being straight..it's about being normal.'

Thanks again for posting this,

CHRIS WBS
05-01-2009, 11:33 AM
I find it interesting that this surgeon felt the need for an anterior surgery on this patient, especially since her curve was not that significant and did not involve the sacral area.

debbei
05-01-2009, 11:35 AM
I find it interesting that this surgeon felt the need for an anterior surgery on this patient, especially since her curve was not that significant and did not involve the sacral area.

I wondered that too, but then just assumed she must have had significant disk deterioration?

Linda B
05-03-2009, 09:57 PM
I was glad to see a scoliosis story about an adult, but disappointed that they repeated the myth that scoliosis causes the lungs and other internal organs to be crushed. I don't believe I've ever seen or read evidence of that.

I wonder why the story made no mention of the National Scoliosis Foundation with its office just outside of Boston. There was no mention of the huge cost of this surgery. There was no mention of any of the new developments that are alternatives to surgery such as the Spinecor brace, the SOSORT worldwide group, yoga for scoliosis or the Schroth exercise methods.

Linda B.
Age 61, diagnosed at 13. Curves over 60 degrees. No surgery!

Qikdraw
05-03-2009, 10:44 PM
I was glad to see a scoliosis story about an adult, but disappointed that they repeated the myth that scoliosis causes the lungs and other internal organs to be crushed. I don't believe I've ever seen or read evidence of that.

Well each case of scoliosis is different but my scoliosis certainly impinged on my breathing. One of the reasons my doctors told my parents I needed the surgery was because I would die in my early 20s from suffocation, in that my lungs just simply would not have enough room to inflate properly.

The last year before my surgery I definately noticed reduced breathing. They started doing breathing tests a little over a year before my surgery as well.

So I definately think scoliosis can effect breathing, but I don't think its overly common.

Brad

Pooka1
05-04-2009, 06:12 AM
There was no mention of the huge cost of this surgery.

Just curious... do you also complain about the huge cost of organ transplantation, bypass surgery, brain surgery, etc.?

I'm trying to find some, any, logic in this statement. What is your point of bringing up the cost of the surgery to treat scoliosis?

Also, are you against all modern improvements or just surgical ones? Are you a Luddite (one who eschews modern technology)?

titaniumed
05-04-2009, 09:42 AM
Its not a myth. In fact its quite plain to see that the ribcage will pull down on the organs and there is no debate or proof required with this. There are computerized breathing machines that will measure pulmonary restriction.

If you are in your 60s with 50 degree and higher curves you need to be vigilant to curve progression. Curves can progress very quickly and unless one x-rays often, they are not going to know until an impingement happens.

As long as there is no pain, and collapse, its fine to brace. but you are using up your surgical window and this needs careful consideration. In fact, the progression rates for NON scoliotics at age 60 and above are alarming. A new tern "senior scoliosis" needs to be used.

All of the alternative methods are fine, till there's a problem. All scoliotics with 50 degree curves NEED to be aware of surgical intervention. Its important. Being misled or blind to this fact is naive.

Some of us have walked that road.
Ed

Pooka1
05-04-2009, 07:19 PM
1. The expense of surgery has no bearing whatsoever on the necessity of it.

2. Alternative treatments to surgery don't automatically become effective just because a person won't consider surgery. That is, fear of surgery doesn't magically mean there are other alternatives.

3. Medical sequelae like decreased lung function from high-angle scoliosis don't magically become myths just because a person is afraid of surgery.

4. Wishful thinking is best left to children.

macky
05-04-2009, 11:41 PM
MYTH that scoliosis does not cause the lungs or other internal organs to be crushed?
I will explain how it did all that and more to me, if you want me to, exactly the same as many others.
I am pleased the you have not suffered any of this, but have come to the conclusion that with curves over 60 you are very fortunate.

Macky

Laurairene
05-05-2009, 12:54 PM
Hi Everyone,

I just joined the group. I had the same surgery performed on me On October 10 and October 11, 2005 by Dr. Glazer (same doctor). I am pain free from that surgery. It isn't for everyone but it did work and she is right, the recuperation is something else. You do get there and 4 months later I returned to work. However, L4-L5 were left alone and now I have ruptured discs and in severe pain. On June 1st Dr. Glazer will repair the 2 levels with a laminectomy and a diskectomy. I expect to be laid up for at least 6 weeks.

I am 56 and can't wait to get all of this behind me. Laura

CHRIS WBS
05-08-2009, 11:02 AM
I was glad to see a scoliosis story about an adult, but disappointed that they repeated the myth that scoliosis causes the lungs and other internal organs to be crushed. I don't believe I've ever seen or read evidence of that.

I have seen evidence of this and I experienced it myself. A few years ago when I first began looking at surgery, a friend of mine showed me a picture of herself taken with a woman at a 50th high school reunion. This woman was in a wheelchair and she required oxygen because her twisted spine was squeezing her heart and lungs. When my friend told her about my surgery indecisiveness, she told her to tell me to just do it; donít wait any longer. She unfortunately waited until she reached the point of becoming too high risk for surgery. I have gotten relief from intestinal compression following my surgery. I had a very big curve in my lumbar spine that was squeezing my abdominal organs. I no longer experience the intestinal problems I lived with the past few years.

To Laura:

Thanks for your post, Laura. Youíve also addressed questions raised in another thread about how low to extend the fusion the first time around. Good luck to you with your upcoming surgery.

SIsForSarah
05-09-2009, 09:42 AM
Just wanted to address a couple of the ideas people have made in this thread:

- I am also an example of scoliosis being able to affect your lungs. They did tests on my lungs before my surgery and I was definitely losing lung capacity. I could even feel that I was getting winded more easily and I was only 14 at the time.

- I really feel more warnings should be given about taking care of the discs below your fusion if you're fused into the lumbar region. I have now herniated (ruptured) my L5/S1 a couple of times and I know the first time was because I had never been told how important it would be to work on my core strength to preserve the remaining discs. Now that I do work on my core strength, I feel much better. I have a few discs below my fusion, so can only imagine how much strain is put on those with only one or two discs left unfused.

leahdragonfly
05-09-2009, 10:13 AM
<snip> There was no mention of the huge cost of this surgery. There was no mention of any of the new developments that are alternatives to surgery such as the Spinecor brace, the SOSORT worldwide group, yoga for scoliosis or the Schroth exercise methods.

Linda B, if you think scoliosis surgery is expensive, you should check out the price tag on cardiac surgery. So maybe all those cardiac patients should try yoga or something. Surely there must be an alternative to surgery?

Pooka1
05-09-2009, 11:04 AM
Linda B, if you think scoliosis surgery is expensive, you should check out the price tag on cardiac surgery. So maybe all those cardiac patients should try yoga or something. Surely there must be an alternative to surgery?

There is no logic to Linda B's comments. It's just an example of the noises people make when they are afraid of surgery. If telling herself counterfactual statements helps her then I say so what? We don't need laws against ignorance (except in public schools).

debbei
05-09-2009, 11:23 AM
There is no logic to Linda B's comments. It's just an example of the noises people make when they are afraid of surgery. If telling herself counterfactual statements helps her than I say so what? We don't need laws against ignorance (except in public schools).

Regarding the cost of this surgery: Yes there are more expensive operations, but for some folks with poor insurance or no insurance at all, the cost of scoliosis certainly can be an issue. Surgery might be postponed so long that the 'effective surgical window' has passed, or never have the surgery at all ending up in terrible pain with loss of quality of life. In my case, we decided I should have the surgery before out wonderful cobra insurance ended last month. If I were to have the surgery with our current insurance, the out of pocket costs would have been much higher. With no insurance at all---I shudder. We would have had to cash in all our retirement savings.

leahdragonfly
05-09-2009, 12:35 PM
Debbei and Sharon,

I agree with both of your comments about the price of surgery. As an aside it also shows how poorly our current health care system works, with millions of uninsured who have minimal access to medical care.

And I also agree that Linda is entitled to her opinions about surgery and treatment options. But I find it an extremely cheap shot on her part to point to the price of surgery and suggest it is unnecessary or unwarranted.

Just my two cents.

Gayle

dolores a
05-09-2009, 09:47 PM
This thread has been the most enlightening chat to date since I discovered this forum! It has affirmed my resolve to have this surgery done in June, don't get me wrong though, I'm so nervous to do this, but it is for just about all the reasons mentioned in this thread. As far as the lungs are concerned (not one of my issues) who in this forum can say that this is not an issue for others, unless you are an accomplished expert in this field? Usually I try to dismiss comments that make no sense and chalk them up to just opinions, but sometimes it's like when someone who is not familiar with scoliosis tells you, you are crazy to have this surgery! I actually was told by my regular MD that I was out of my mind to even consider having this surgery done. Though when I told him that I had gotten another opinion that also told me that I would need correction, this MD actually told me I was screwed!

Sorry I am really beat from pain all day, I'm kind of going on and on, but as I said this thread was great -- anyway thanks for the heads up on the women from Boston's televised surgery, I also gained a bit of strength from her experience!

Wishing
05-13-2009, 05:39 PM
Yes. Lung and cardiac problems are a reality for some of us with severe scoliosis. I really wish that the current surgical instrumentation techniques were available when I was an adolescent as I had spinal fusion without instrumentation in 1961. My thoracic curve is 97 degrees with lung volume 31 per cent. I have severe restriction of my lungs (they are squashed) and get short of breath. My life will be shortened because of this. I have severe sleep apnea at night and use a Bi-pap. So, these issues are not a myth. I was a straight, active kid until age 10 when scoliosis was first noticed and it progressed rapidly in adolescence. Recently had lumbar curve reduced to 47 degrees from 70, but surgeon unable to correct thoracic curve due to spinal cord issues noticed on monitoring. At least now my rib cage is up off my pelvis and I feel that I can now take a deeper breadth. I'm now monitored by both a pulmonologist and cardiologist. I have been told that pulmonary hypertension and cor pulmonale (heart failure) are in my future. However, I am grateful for any correction that I have gotten, and it may delay the onset of the above problems.