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TiffanyK
02-16-2010, 03:31 PM
So, I'm back from my second opinion from this morning. Thanks to all for the encouragement! I took my file and every x-ray/MRI I have ever had with me. With that I received new x-rays today as well. My scoli has progressed from 48 degrees into the 50's in just 5 months. Apparently it is rotating as well, which I never have been told about before. He told me that I am a candidate for surgery, but wants me to have new x-rays again in 3 months to check the progression. I would be fused and have rods down to L5. He mentioned the possibility of having a 2nd and 3rd surgery in the future due to the long fusion. How far into the future could that be? I have a long list of questions now from my long drive after the appointment. My top question (other than my previous question) is how long after surgery would I have to wait to have another baby? A year... or two? I'm in no position right now to have one, but I know I want another baby in the future.

He also mentioned the possibility of me going to Hopkins in Baltimore for another opinion. I don't know if I really want to go for more opinions... plus I'm pretty sure that my insurance won't cover anyone at Hopkins. Has anyone gone to Hopkins in Baltimore before?

Well, that's about it for now. Thanks for letting me rattle on!

txmarinemom
02-16-2010, 04:31 PM
So, I'm back from my second opinion from this morning. Thanks to all for the encouragement! I took my file and every x-ray/MRI I have ever had with me. With that I received new x-rays today as well. My scoli has progressed from 48 degrees into the 50's in just 5 months. Apparently it is rotating as well, which I never have been told about before. He told me that I am a candidate for surgery, but wants me to have new x-rays again in 3 months to check the progression. I would be fused and have rods down to L5. He mentioned the possibility of having a 2nd and 3rd surgery in the future due to the long fusion.

Tiffany,

Out of curiousity, is either doctor a scoliosis specialist (particularly a member of the Scoliosis Research Society)? SRS surgeons do a special fellowship, and dedicate at least 20% of their practice to spinal deformities (with most, it's 100%). You can locate SRS doctors here (http://www.srs.org/find).

First of all, going from 48 to (low) 50's may or may not indicate progression: Acceptable deviation from x-ray to x-ray is normally 5. For instance, my curve measured 48-53 all my adult life (until fusion - purely for pain, not progression - at 39).

Secondly, was he talking about 2-3 additional surgeries *outside* straightening your curve?

With lumbar curves, surgery can sometimes (not always) be a 2 stage surgery (anterior release/posterior fusion are typically performed a few days apart). If he's not speaking specifically of *that*, make him explain to you what he's talking about doing.

If it were me, I'd absolutely be seeking a 3rd opinion.

Best regards,
Pam

ADMoul
02-16-2010, 06:17 PM
Just wanted to let you know I did see a scoliosis specialist at Hopkins in Baltimore. His name was Dr. Khaled Kebaish and he came highly recommended by a friend who had to have revision surgery. I am sure he is a very fine surgeon but I don't know that he wanted to tackle my large curves. (92 lumbar, 63 thoracic.) We were there for almost 4 hours for the app't. which included some X ray time but had barely 20 min. of time with him. It was a lot of waiting. He told me my surgery was not medically necessary and would strictly be for "quality of life" and that it "might take 2 surgeries". We left there knowing he was not the right Dr. for us. That was in Oct. I am now 2 weeks post-op from surgery with Dr. Lonner in NY City. We got a whole different feeling with our appt. with Dr. Lonner. Research Dr.s carefully and go well prepared with questions. I found the David Wolpert book on scoliosis surgery very helpful with this. Good luck to you.

TiffanyK
02-16-2010, 10:08 PM
I saw Dr. Majid in York, PA who is on the SRS list of doctors (that's how I found him). I should have said that I was going to a scoli specialist. I do realize that different doctors can measure differently and there could be variations on the degrees. However, he re-measured my x-ray from last year and compared it to the x-ray from today. I've been seen by two other doctors before today and have never had a deviation from x-ray to x-ray and have always been at 48 for 12 years.

The additional surgeries he was talking about were only possibilities for in the future if something were to happen to my s1 and s2 since I would be fused to L5. He was trying to make me aware of all possibilities and give me as much information as he could. He even mentioned for me to go to the SRS site for more information between now and my next appointment in May and to write down more questions to ask. I feel that he was being straight forward with me and not sugar coating anything. I liked that and want to wait the 3 months before deciding to get another opinion or have surgery.

I'm not trying to be defensive. I just feel that I probably left out or didn't explain things well the first time. However, the more help and information I get the better I feel. I appreciate everyone's comments and help! Thank you!

Oh, and Anne, I've never seen anyone for my back outside of PA except to go to Dupont when I was 15. I had a long wait there too. I'll keep Dr. Lonner's name in case I feel I want to see someone else. Also, I'll check out that book as I've seen it mentioned a few times before.

green m&m
02-16-2010, 11:09 PM
I'd definitely try to get a 3rd opinion.

From the degrees your lower curve looks like a compensatory curve, and if I was in your shoes I'd prefer a shorter fusion so I could retain my lumbar mobility. Maybe ask if bending x-ray could determine wether or not the lumbar curve is compensatory at your three month follow up?

My surgeon's been saying I'm a candidate for surgery since 2005 and at my last visit he told me we should really start considering surgery when I hit 60 degrees in my thoracic curve. I'll probably hit that number by my next visit which is in two years. I'm fine w/ that, thankfully I'm not in daily pain like you are, so far I've been able to manage.

Good luck, Tiffany :)

TiffanyK
02-17-2010, 07:29 AM
I believe my lower curve is a compensatory curve. I actually have 3 curves, but to be honest I can never remember what degree my top curve is. Every doctor that I've seen can't believe how balanced I really am. However, I don't understand how a shorter fusion would help. Could someone explain? The most pain I have is in my lumbar. I'm actually nearly in tears right now from the pain, so it's going to be a long day at work. Thanks for all the help.

Pooka1
02-17-2010, 01:55 PM
I find it mind blowing that your lumbar is apparently acknowledged to be a compensatory curve and yet the surgeon intends to fuse to L5.

Did you do a bending radiograph wherein it was determined the lumbar was compensatory or structural?

There must be some very extreme balance situation wherein the surgeon doesn't think he can get you in good sagittal balance unless he fuses the compensatory curve also but I would want that in writing before allowing him to fuse a compensatory curve. It sounds unusual to say the least.

Fusing into a thoracic compensatory curve is one thing... you might never notice it. But fusing into a compensatory lumbar curve will be obvious to you.

Also, it is not clear that you are progressing which is why he wants another radiograph in a few months. And hitting and hanging at ~48* for 12 years goes completely against the paradigm. Your case, Pam's case, another case that slips my mind at the moment... that's three people in this little sandbox who have a large curve that doesn't progress for several years and even a few decades. I have to wonder about that paradigm.

To me, your case is screaming for more opinions but what do I know?

TiffanyK
02-17-2010, 10:19 PM
To be honest, I didn't even know what a bending radiograph was and looked it up, but now know that it sounds like something I had done when I was at Dupont in DE at 15. I'm feeling quite stupid with some of the terminology being used. Obviously I'm not as knowledgeable as some on here. From when I was 17 until I was 26, I ignored the fact that I have scoli. I'm now sorry that I didn't go more often to a doctor and didn't learn more. At the moment I'm just overly sensitive for more than one reason. I don't intend to go back into lurking mode. I'm determined to learn more so that I can ask better questions at my next appointment. I started a notebook with questions. Any suggestions on what to ask would be very helpful. Thanks! :)

Pooka1
02-17-2010, 10:28 PM
Please don't feel stupid. NOBODY is born knowing any of this.

You lost no time whatsoever in ignoring your scoliosis during those years. NONE. Your curve was stable. You would have known if it wasn't.

You are actually a very lucky person that your curve remained stable over those years at that angle. You must have great karma. :)

Good luck.

TiffanyK
02-17-2010, 11:11 PM
Thanks, but I'm pretty sure my karma ran out 3 years ago. My life has been pretty bumpy since then. At this point I think I'm due some good karma again. I keep praying and hope that something will give one of these days! :) I just keep smiling for my daughter!

dorigirl
02-26-2010, 07:53 PM
Hi Tiffany, I just wanted to let you know that Dr. Kebaish did my fusion in 2006 (T2-L4). In my opinion, he is fabulous! He and his entire team are brilliant and have a great bedside manner. You can never go wrong with getting several opinions, believe me you will know when you find the right person. Obviously, your insurance coverage is a huge issue, but if you can go to Johns Hopkins you will be in excellent hands. Good Luck!

Shari
02-28-2010, 01:00 AM
A big Welcome Tiffany,

I am assuming you are from somewhere near PA. I wish they had the same technology when I was your age. There's just something not right here with me. Maybe I have misunderstood, but if you have provided your past info to the doctor and if he took an x-ray to compare, now to then. He should be able to see the difference, and know that it probably keep progressing.

It is very important you see an ADULT scoliosis surgeon. Preferably one that does it often. Don't waste any more time on these quacks, that say they do the surgery. Linda R. (our moderator} has a list of Doctor's to choose from.

I choose mine with in a 300 mile radious.

I'm sorry I'm rambling, but this subject chaps my cheecks. There are plently of qualified and compassionate Dr.'s out there.

Don't let them waste anymore of you time. And this bit about 3 different surgerie
s b/c of a long fusion. I'm T-1 to l -5 and my Dr. said he would rather do it all at once instead of putting me through it more than once.

He did say one day I ,may have to go to the pelvis but that would be a minor surgery.

Best Regards,
Shari

jrnyc
02-28-2010, 01:12 AM
Hi Tiffany
i know what you mean by lumbar pain! my thoracic is helped with botox shots to freeze the muscles, but that doesnt work for lumbar...& that is where i suffer really awful pain...how wonderful that you smile for your daughter! in bet there are many days that must be hard for you to do!

are you anywhere near NYC? we've got some great surgeons there..i say "we" cause i am born & bred, tho i left almost 3 years ago & moved to CT..

anyway, there are some great ones in NYC...i have had MANY opinions on my needed surgery...havent done it yet, though..but i see my NYC surgeon again on april 12th to discuss it...

best wishes to you for some better karma to come!

jess

pmsmom
03-03-2010, 10:37 AM
Hi, Tiffany.

We are from the York, PA area and traveled into DC to see Dr. William Lauerman.

My dd (age 16 at the time) had surgery with him last Sept. and we couldn't be more pleased.

You can PM me for more info if you'd like.

Take care,
Marian