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View Full Version : Hello to everyone - Looking at Surgery



djkinkead
04-15-2011, 09:50 PM
First off, I want to thank everyone for everything you guys write about getting the fusion surgery. It's a scary thing to consider but you guys are helping me be braver about facing it.

My scoliosis was discovered when I was 16. The doctor wanted to do the rod surgery, but my mother didn't want to deal with it--so another doctor fit me for the Milwaulkee brace. I wore it for 1.5 years--didn't really do any good. Not sure if it prevented anything either. He told my mother what she wanted to hear: my back shouldn't get worse.

Well, here I am in the bloom of menopause and I have noticed in the past year or two when showing dogs, I have become much more winded showing them. I noticed my height seems to be going down an inch a year and realized the big height loss was five years ago when I had to walk floors for 12 hour days, 13 out of 14 days for a five month period. Sigh.

Anyway, after hurting my back pulling some muscles getting a dog into a cage, I decided to visit a spine doctor. He did xrays and the top part of the curve is 85 degree angle and the bottom part (I know, I need to learn the appropriate terminology) is 60 degrees.

I have researched chiropractic sites to see if I an avoid the surgery, but with my big curves, it's looking like surgery for me.

How do I find the best doctor? I find lists, but not sure if the criteria isn't linked to the use of certain products used in the surgery. I don't hurt right now, but I understand that doesn't mean my spine isn't busy rotating or getting more crooked.

Any advice on finding the best in the Virginia/DC/Baltimore area would be appreciated. Thanks!

Elisa
04-15-2011, 10:03 PM
Hello to you! Those are some pretty big curves you've got there and am surprised that you're not feeling pain. I have not gone through spinal surgery, it's my son who has scoliosis but you have come to the right place for information. I was helped tremendously and I know you will too as there's a wealth of knowledgeable folk here who are very willing to share their personal experiences with others. I don't know where I'd be without these guys.

sarahcant
04-16-2011, 11:09 AM
i found this article http://www.beckersorthopedicandspine.com/orthopedic-spine-industry-leaders/2933-8-leaders-in-scoliosis-to-know?sms_ss=aolmail&at_xt=4d7cc191923c436e%2C0

jeneemohler
04-16-2011, 11:41 AM
Welcome!

This is such a great place for information and support. My best advice is to just spend some time doing your own research. It is your body, and a huge decision to decide to go ahead with this surgery. It sounds like you have some time to research, due to not having pain issues yet. That IS surprising with the angles of your curves! I'm glad you don't have to deal with that... It was scary facing surgery at first, but once I was armed with the knowledge from this site, I was ready to take the plunge. Just a warning...it can be a little addictive on here! You feel so welcomed and surrounded by people who truly understand you and care...

So much of the fear that people face is the fear of the unknown. Not always, but usually. Keep reading on here, (take advantage of the "advanced search" like Jess mentioned recently), and dig in! There are lots of stories, and lots of information on doctors that are really good; their names come up again and again with happy patients. Linda Racine, our moderator, also has some great links to check out. Check out the signatures on the bottom of the posts, they are a condensed version of a wealth of information on before and afters, and where it was done. Good luck in your search, and remember we are here to help, and we understand where you are coming from! Ask your particular questions and worries and we will do our best to answer or steer you in the right direction!

jrnyc
04-16-2011, 12:14 PM
hi djkin
go to the home page on this website...(National Scoliosis Foundation)...click on Resources at the top of the page...then find orthopedic doctor page...open that page, and find "geographical regions", where they list the surgeons by state....you will find the SRS list..the top ortho/scoli surgeons in the country....find your state, open that page, and scroll down looking for the surgeons near you....

jess

LindaRacine
04-16-2011, 12:40 PM
Welcome... in addition to what Jess recommended, you might want to check for recommendations in the Physician/Hospital Recommendations forum:

http://www.scoliosis.org/forum/forumdisplay.php?115-Physician-Hospital-Feedback

Best of luck with your journey.

--Linda

Doodles
04-16-2011, 01:08 PM
djkin--
Welcome. As you can already see, lots of invaluable info from some very knowledgeable people. This will all help with your decision. Good luck to you. Janet

djkinkead
04-17-2011, 07:45 AM
Thank you to everyone who posted other links and places to look within this website.

I initially did go see Dr. Good (Northern VA), but discovered since he is outside of my health care network, the cost for the surgery seemed "iffy" as to how much insurance would pay and how much extra I would have to pay since he was out of network. I couldn't tell if I'd end up paying a couple extra thousand or another eight or nine thousand. Sigh.

Dr. Good seemed like a very nice person and very knowledgeable about the spine surgery. I just need to stay within BCBS, and there are a lot of options there.

One link about the top eight surgeons was of interest. Makes me think about Charlottesville--about a three hour drive.

Still pondering.

Will continue reading posts. Hardest part is that I do not have pain right now and there is no doubt there will be pain after for a while and I don't want to think three months later "What did I do?"

Thank you everyone for your words of encouragement. I am a chicken about surgery and pain.

jrnyc
04-17-2011, 09:43 AM
hi dj
i am glad for you that you do not have pain with curves of that size...perhaps they are not pressing on any nerves...
please be careful when showing dogs, or doing other physical things...i managed my scoli with little pain until i herniated discs...then the pain really started intensely...and it has been downhill since then for me!

it might be a good idea, even without the pain, to find a top scoli surgeon and have him/her (seems to most often be a "him") monitor the curves for you...to see if there is progression happening now....

oh...and welcome to the forum....there are many kind people here, offering information, experiences and support...

jess...and Sparky (my sweet puppy, my secret pain therapy)

http://i1085.photobucket.com/albums/j439/jrrnyc/pillow2.jpg

Karen Ocker
04-17-2011, 10:39 AM
Will continue reading posts. Hardest part is that I do not have pain right now and there is no doubt there will be pain after for a while and I don't want to think three months later "What did I do?"

Thank you everyone for your words of encouragement. I am a chicken about surgery and pain.

Despite common beliefs that pain is the indicator for surgery breathing is much more important and makes the surgical issue more urgent. The reason is that, to undergo anesthesia, one needs a certain amount of breathing capacity. Without that it is too late for surgical correction. I had a triple curve with an 80 deg thoracic, 40 lumbar and 30 cervical. By the time my surgery was scheduled I had lost 30% of my breathing capacity. I also lost lung tissue and it never comes back. After my surgery, because the curves were so large, I lost a little more capacity due to the necessary thoracic/anterior approach. This is because the the incision is made through the respiratory muscles. The younger a person is the more chance of improving the pulmonary function.
My surgeon told me not to wait because, with my curves, deterioration within the next 6months might make me ineligible for surgery.

Restated: indications for surgery are: progressing curves, loss of breathing capacity(even without pain) and pain.
This sounds scary but one needs the facts. Due to my medical background I saw the writing on the wall for myself. Once I found the right surgeon for me I did not delay.
Right now I am pain free. Large curves are nothing to fool around with and only get worse.

LindaRacine
04-17-2011, 10:51 AM
Hi again...

You might want to check out

Charles Edwards II:
http://www.marylandspinecenter.com/surgeon_profiles.htm

Khaled Kebaish:
http://www.hopkinsortho.org/khaled_m_kebaish_md_msc.html

Paul McAfee:
http://www.drmcafee.net/

I think these surgeons all have great reputations in terms of scoliosis, but I've heard especially good things about Khaled Kebaish.

Regards,
Linda

ShariMSU
04-17-2011, 07:28 PM
Hi and Welcome!
I know you are in Virginia but I know many travel quite a distance for surgery. My doctor works with BCBS, however he is in Michigan. I had 110% confidence in him and I think he is the best! I had surgery at 49 years old, and 62 degree curve. I just hit my one year anniversary and life is wonderful. Feel free to check out my blog/resource center for a variety of information. www.scoliosisthejourney.com

Good luck to you and like everyone here already said, this forum is a great tool and resource!

Ask lots of questions and you will find answers.

djkinkead
04-22-2011, 09:37 AM
All the doctor references were great.

Linda, I had been reading about Dr. Edwards earlier and was pondering him. He works out of Mercy hospital and that is considered a "gold" level facility for spinal Surgery. I am still looking hard at Johns Hopkins as many consider it the Mayo Clinic of the east. Thank you for pointing out that specific doctor--they have a lot of spinal surgeons. He really seems to have a strong interest in scoliosis...and mine seems to be a whopper. Sigh.

Also, the post about breathing is another wake-up call. I had read a post on another forum how some guy lost his mom and aunt due to that problem. Don't want to go that route.

Am in Denver this week. Will start making appointments when I get back home next week.

Thanks once again to all for your advice.