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ADMoul
10-23-2009, 04:26 PM
So, I went for the consultation with Dr. Kebaish at Hopkins in Baltimore. A long day, a lot of hurry up and wait and of course, a lot of X-rays. The bottom line is I have a thoraco-lumbar curve pushing 90 degrees (according to the Dr., the most difficult type to treat). Bending X-rays showed that my spine is very stiff which limits correction. I would have to be fused to the tailbone, 7 hour surgery and possibly a 2nd one for the tailbone? He did not make a strong recommendation one way or the other but estimated perhaps a 50 % correction at best and certainly no guarantees of pain-free living due the amount of re-structuring work that he would have to do. He commented several times that choosing to do this surgery would strictly be for "quality of life" and that my spine, deformed as it is, is not impacting my overall health. No organs are affected, lungs are fine, etc. And as far as preventing curve progression--it really can't get much worse. I can't justify doing this. What I was reading between the lines was in my case, the cure might end up being worse than the disease. He said my body has adapted very well to this. Obviously, I will be dealing with a lifetime of pain mgmt. which carries its own set of risks, I know. I just cannot imagine never being able to swim breastroke again, or reaching down to put leashes on my dogs. So, for now, we keep on, keeping on. I get tremendous relief from epidurals, which he said can be used on a long-term basis. My heart and head both say this is not the right thing for me right now. Maybe something will happen that will force the issue or make me change my mind--I don't know. I am worn out from obssessing over it and need to get on with my life.
Thanks for listening,
Anne

Karen Ocker
10-23-2009, 06:03 PM
"not impacting my overall health" Don't you believe it. My curves were less than yours and I lost lung tissue-never to return. When your spine curves every organ in the chest moves with it--even the heart and major blood vessels. My stomach was laying on it's side and I had reflux which damaged my esophagus--I was never overweight.


If you delve into the scientific literature--as I have- You would learn that even children with curves of 60 degrees have reduced lung function not to mention adults.
My pre-op curve before my revision was 80 deg. I got a 50% correction. I am 67 and still able to work and enjoy life. I do not have any pain. The doctor you consulted is not comfortable treating large curves. Other surgeons are. Your curve can indeed get worse and I have seen, as a medical professional, that scoliosis progressing in adulthood can kill. When the lungs are that distorted they lose ability to oxygenate blood. My decision for surgery was helped by a lady who said she waited too long and now needs Oxygen 24/7. Her lungs are too deformed to tolerate anesthesia.

I am fused T-4 to sacrum(tailbone). I go hiking in the Alps every year, do Pilates and live a completely normal life. My only difficulties are trying to clean my mom's oven by hand in a small corner.

My suggestion: get another opinion from a scoliosis specialist who treats adults with large curves.

LindaRacine
10-23-2009, 10:55 PM
And as far as preventing curve progression--it really can't get much worse. I can't justify doing this.

Oh, believe me, it can get a LOT worse. I've known people with >180 degree curves, and have seen photos and xrays of even worse curves.


I just cannot imagine never being able to swim breastroke again, or reaching down to put leashes on my dogs.
While you'd be limited in the short term, while recovering from surgery, I know a lot of people who have had long fusions (to the ilium), who can do what you've mentioned, and much more.

With that said, however, I think making the decision about whether to have surgery is a personal one. We all have ot judge whether it's right for us.

Whatever you decide, best of luck.

Regards,
Linda

jenparker
10-24-2009, 12:28 AM
Karen

I've been thinking and worrying about this post all day--I know everyone has to chose for themselves what is right. But--you rock! My double major curves are only in the 50 deg range and I am having surgery in Feb.

I am 37 and the curves are affecting my entire body. I have an esophageal ulcer (I am not overweight and no doctor would believe me until I pushed for an endoscopy!) and gastroparesis--most likely the nerves are all messed up (I am not diabetic or even pre-diabetic). I have the beginnings of osteoarthritis but it is affecting my body unevenly--one foot turning inward, one hip will not rotate, all because I am so out of alignment. I suffer 3-4 migraines per week and several specialists have said they are likely due to the scoli curves affecting my cervical vertebrae and putting undue pressure on the base of my skull.

I never would have believed that scoliosis could affect the entire body. At the junction of my two curves the spine has now twisted and become kyphotic. The longer I wait the less correction I will achieve and the harder it will be to recover.

It is wonderful to see both sides of issues on this site. I was skeptical for a long time of having the surgery--but I've had to wake up to the facts--and it took seeing several docs to convince me--I'm a stubborn gal (my RN makes me even more skeptical!)

Jennifer

ADMoul
10-24-2009, 07:17 AM
I heard you loud and clear. Monday, I am calling to get an app't. with Dr. Boachie. I have been stewing about the Hopkins app't. for 10 days--I didn't leave that app't. with a really good feeling. Skepticism would be the description of the Dr.'s attitude. Thanks for giving me the reality check, kick in the pants and HOPE!!!
Anne

titaniumed
10-24-2009, 11:49 AM
Anne

You made the right decision. Go up to New York, see the sights, and go see Dr Boachie.

90 degrees is getting up there.......

If you need a list of questions to ask him, we will post for you. You will be fine.

Ed

Doodles
10-24-2009, 01:43 PM
Anne--
I swore to never ever have the surgery but only continued to worsen. I had been seen by another surgeon about 3 years ago who obviously didn't really want to tackle my back but would do it. He said I could probably live a normal life without. Things just got worse. I think you made a wise decision to get another opinion! Janet

debbei
10-25-2009, 01:48 PM
Anne,

I really don't know anything about the Dr. you saw, but if you were to go back and look at some of my first posts here, you will see how I referred to the first surgeon I saw for this 1.5 years ago as 'Dr. Dumbell.' Well....I think we have another Dr. Dumbell in our midst. What Karen and Linda said is right on. Go see Dr. B and see what he has to say. I'm sure it will be MUCH different advice that the first surgeon gave gave you.

I know this is SO SO hard to wrap your head around. HOnestly, it hit me like a ton of bricks and I practically had a breakdown in the Dr.'s office when I found out that my curves were so large after thinking that I had been 'cured' as a teenager with bracing. It is a long learning and decison making process. You will have to come to grips with this in your own time and make an informed decision. At least though, you will be making a decision with all the proper facts.

Stick around here, ask any questions you want, and do a lot of reading of old posts. It helps tremendously.

Good luck,

pmsmom
10-25-2009, 03:10 PM
Hi, Anne.

I don't know where you're from, but if you are close to DC (I see you went to see a doc in Baltimore), I recommend my dd's surgeon, Dr. Lauerman at Georgetown if you need another opinion as well.

Good luck and keep us posted!

jrnyc
10-25-2009, 09:05 PM
wow, & i thought hopkins was good! just goes to show, you cant trust a reputation of a hospital..i had a bad experience with the supposedly great & wondrous mt sinai hospital in nyc, & a bad one with yale new haven in ct also, so i should have learned that lesson already!

there is wise advice here on forum...& it can be trusted! i am appalled that a doctor would tell you something wont get worse..does he have a crystal ball?

sent you a private message...

best of luck
jess

Shari
10-26-2009, 12:10 AM
Hi Anne,

I had seen several Doc's, like many others here. I had one in Pittsburgh tell me that I did have scoliosis, (DUH), but most of my problem was from arthritis.

I couldn't get out of there fast enough. Since I was diagnosed at 12, and I was, at the time 43.

I sometimes wonder if some Doc's are afraid to take on some of our cases because they may not feel confident enough in themselves, which is okay with me. What I think is extremely WRONG, is that they don't have the integrity to admit their fear, tell us they don't think they are as able to tackle this particular case, then recommend a second or third, etc, opinion.

Don't let anyone walk out of their office without a glimmer of hope!!!

This is one of the subjects that pisses me off, there is no excuse for telling anyone, that scoliosis can't progress much more, or affect our organs, that surgery can't help quality of life, or give a pain free life.

We all have different outcomes, mostly because no 2 surgeries are exactly the same. But we all deserve the chance to decide for ourselves.

Maybe they should make an addition to their "Oath" they take, promise to have the balls to tell the truth!!!

Sorry I got carried away,
Shari

Vali
10-26-2009, 05:45 AM
Here, here! (raise your glasses). I'll drink to that!

CHRIS WBS
10-26-2009, 09:14 AM
Anne,

This surgeon DOES NOT want to do your surgery. I had a similar experience with a surgeon in Chicago. Do get other opinions. I had a very stiff 80 degree thoracolumbar curve. On bending it corrected to only 60 degrees. But still my surgeon was able to straighten it to 35 degrees with just a posterior surgery. And he did a beautiful job of building lordosis. It was a rough surgery, but the benefits have far exceeded my expectations.