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sccrm08
02-14-2007, 01:32 AM
Hi

I'm new here, but I have been reading the posts since early January.

A little (alot) info about me...I was diagnosed with scoliosis when i was about 13 and wore a milwake brace for 4 years.I am now 42. When i was taken out of the brace, I was told there was no need for any more follow up as curves do not increase after you stop growing and they are less than 40 degrees. Nor does scoliosis cause any pain. In my early 20s I asked my Dr. to x-ray my back and was told no need, any back pain would not be from scoliosis and was most likely from taking care of two small children. When I hit 37, I could not stand the pain any longer and asked again to have my back x-rayed. At this time the curves were at 48 degrees, but felt to be balanced and I was still told scoliosis does not cause pain. I did go for pain management and tried many things for a couple of years before a Dr. finally said that they are finding scoliosis does cause considerable pain in some people. My back has been x-rayed yearly for the last 3 years and depending on who reads the x-rays, you get a different degree. In April 2006 I had to have cervical spine fusion from C4 - C6 and the surgeon noticed I did not sit straight and told me to have the scoliosis followed up as soon as I recovered from that surgery. In August 2006 I had a complete set of x-rays including bending and the curves were now at 54 degrees with a severe side shift. In the bending x-rays, the bottom curve completely straightened, but there was no change in the top curve. At the appt with that surgeon, he told my husband and I that he felt it was to late for surgery and I would most likely be in a wheelchair in 5 years. He also said he was going to a scoliosis conference that weekend and he would bring my charts and x-rays with him and see what information he could find.This is the same surgeion who did my cervical surgery, and is a wonderful surgon, but does not specialize in scoliosis. When I went back in Jan. 2007 he said good news, He found a surgeon covered by our insurance who said he could do the surgery and give me a good correction. He happened to be the surgeon who corrected my nieces curves a couple of years ago.

I saw Dr. Bains Jan. 14 and he gave us a lot of hope, I agreed to the surgery, but I told him I wanted to wait until May 2007.

Now for my first question, I thought he told me the rods would run from T4 - L4 but he would only be fusing the bottom three disks, that the rods would hold the rest of the spine in place. Has anyone ever heard of this?or did I not understand what he was saying? I will be seeing him again before the surgery, as I called and asked for another consoltation because I have so many questions.

Thanks,
Patty

Houston Curves
02-14-2007, 08:08 AM
I am very glad you made a follow up appointment. I may not be one to advise you as I am also still contemplating sugery, but I've done a lot of online research. What I've read indicates that you have to fuse from the top of the curve (first vertebra not involved in the curve) to the bottom (first lower vertebra not involved in the curve).

For those with actual first hand knowledge, please feel free to correct me if this isn't correct. Thanks.

HC

abhbarry
02-14-2007, 08:16 AM
Welcome to the forum. I can't answer your specific question, but I just wanted to welcome you.

Also, isn't it frustrating when doctors say scoliosis doesn't cause pain? My sister-in-law is in med school and I was reading one of her texts that talked about scoliosis and that text also said that scoliosis does not cause pain. Needless to say, I corrected her with LOTS of examples.

Good luck with your decision. I am making my decision about surgery in 2 weeks and will probably be having it in June 2007.

Best,
Anya

bbest
02-14-2007, 10:10 AM
First of all welcome. I hope you will find this to be a place of help and support. It has helped me in more ways than I can say.

Clearly, that doctor does not have scoliosis. Otherwise, he would know better than to say "scoliosis doesn't cause pain". No two people are alike, so to encompass the symptoms of all of us with scoliosis is ridiculous. I am glad he referred you to another surgeon. Does this new surgeon specialize in scoliosis? If not, I would seriously recommend that you continue to look for one who does. It's a big operation and you definitely want someone who performs this type of surgery frequently.

Best of luck to you.

lelc2002@yahoo
02-14-2007, 10:44 AM
Patty-I agree with Brandi. You should research the scoliosis surgeons in your area & further if need be. I would definitely recommend having a ppo ins plan too. Even if you have to change it to that. Do lots of research...
where do you live?

CHRIS WBS
02-14-2007, 12:04 PM
My sister-in-law is in med school and I was reading one of her texts that talked about scoliosis and that text also said that scoliosis does not cause pain.

I can't believe what I am reading here! Scoliosis does not cause pain? And this is actually being taught to med students? It is only by the grace of God (I pray daily) that I am still able to work. Beyond that, I can do nothing...no more shopping, cooking, heavy housework, socializing after work, etc. By the time I come home from work, my back has had it. If I try to fix myself something to eat, I can barely stand and it feels like I'm carrying 20 extra pounds on my shoulders. I start to feel the compression of my ribs against my pelvis and have to lay down in bed where I spend the rest of my evening. This is my life.

I've just visited the website of Dr. Lawrence Lenke where there are before and after pictures of adult scoliosis patients. No one can tell me that these people were not in terrible pain prior to being treated.

Chris

Suzy
02-14-2007, 03:30 PM
I'm with you Chris. I can't believe they are teaching that in med school. I think we all need to call the local med schools in our own areas and be a guest speaker in the classrooms. No pain my #ss! I was able to function for a max of 3 hours per day before my surgery. It was totally due to my pain!

abhbarry
02-14-2007, 05:19 PM
Yeah, I'm not kidding about the textbook. I hope that my experience will help her become a better doctor when it comes to having patients with scoliosis! It is just so ridiculous as the majority of us have surgery BECAUSE of pain. Unbelievable, huh?

bbest
02-15-2007, 09:49 AM
To follow up what Anya said, the pain that many of us are hoping to alleviate by having surgery isn't just limited to our backs. Often times, nerves are compressed by progressive curvatures causing pain in the extremities as well. I know that's why I had surgery.

Houston Curves
02-15-2007, 09:55 AM
Dr. Hanson said the pain and numbness in my arm didn;t have anything to do with my curves. But then again, he didn't really look at by cervical issues (which is where I think it originates). I guess when you see curves like ours, you might not look at smaller things. Anyway, despite his observation, I remain convinced that the the issues I have with my small cervical curve are causing the pain/tingling/numbness in my left arm extending down to my little and ring fingers. Anyone else experience this? Thanks.

bbest
02-15-2007, 10:00 AM
I remain convinced that the the issues I have with my small cervical curve are causing the pain/tingling/numbness in my left arm extending down to my little and ring fingers. Anyone else experience this?

I have experienced that many times and was told it is nerve related. I used to get a very sharp pain in my arm which felt like someone was stabbing me while I was being electrocuted. Not fun. My Dr. prescribed a Medrol dose pack for me and it did work, but only for a short period of time.

flowerpower
02-15-2007, 10:24 AM
I also have the numbness & tingling on left arm from elbow down to fingers. I also notice that the middle, ring and pinky fingers often feel colder than the other fingers.

Renee

Houston Curves
02-15-2007, 10:34 AM
:eek: Me too!!!! My left hand usually feels colder to me than my right, though apparently not to the doctors. They said that was in my HEAD!

sccrm08
02-15-2007, 05:00 PM
HI All,

Thanks for the replies, I am currently out of town and limited on computer access, so I will save the I return next week.

Shari
02-20-2007, 01:07 AM
Hi Patty,

Welcome, from me too!!! Brandi hit the nail on the head for me!!!

Is your Dr. Bains in WV?

Shari

LindaRacine
02-20-2007, 10:30 AM
Now for my first question, I thought he told me the rods would run from T4 - L4 but he would only be fusing the bottom three disks, that the rods would hold the rest of the spine in place. Has anyone ever heard of this?or did I not understand what he was saying? I will be seeing him again before the surgery, as I called and asked for another consoltation because I have so many questions.

Thanks,
Patty
Hi Patty...

If there is no fusion, the rods will eventually break. I wonder if Dr. Bains talked about both anterior and posterior surgery. If that's the case, I suspect that what he told you that he'd be fusing the bottom 3 discs from the front, and all vertebrae from the back.

--Linda

sccrm08
02-23-2007, 04:12 PM
Hi Patty...

If there is no fusion, the rods will eventually break. I wonder if Dr. Bains talked about both anterior and posterior surgery. If that's the case, I suspect that what he told you that he'd be fusing the bottom 3 discs from the front, and all vertebrae from the back.

--Linda
Hi Linda,

First off, thanks for all the replys, I had to leave town on a family emergency.

The Dr. did say I would have both Anterior and Posterior surgery and the disks he would be fusing would be through the Anterior part of surgery. I understood the posterior to be for the rod placement.

What is the difference between fusing a disc and a vertebrae, is it the same thing? :confused:

At my next appt., my sister in law will be going with my husband and me, she has watched her daughter go through this surgery twice and will be very helpful with everything as I am very overwhelmed.

The Scoliosis surgeon I am seeing is Dr. Bains at the Oakland Medical Center in Oakland CA.

Thanks,
Patty

LindaRacine
02-24-2007, 09:24 PM
Hi Patty...

Discs aren't actually fused. To fuse the front of the spine, the disc must be removed. To fuse the back of the spine, only tiny pieces of bone are removed.

You can see animations of both procedures here:


Front:
http://www.spine-health.com/dir/interfus.html

Back:
http://www.spine-health.com/dir/bonefusion.html

Unfortunately, I can't view the animations (probably because I'm on a Mac). In the front surgery, they may or may not use cages. On the back surgery, they may or not use implants. (If I could view them, I could tell you.)

You can also see animations here:


http://www.understandspinesurgery.com/

You'll need to navigate to see what I'm talking about. If you aren't successful on your own, following these directions:

Click on Understand the Procedures, enter your ZIP code (use 94108 if yours doesn't work), click on Ivan Cheng, click on Spine. You may need to enter your email address. To view a scoliosis surgery procedure from the back (posterior), click on Find by CONDITION: Scoliosis, then on Derotation with Instrumentation. Follow the onscreen instructions.

To view something similar to scoliosis surgery from the front, click on Spine, Find by REGION, Lumbar, then on Anterior Lumbar Interbody Fusion (ALIF).


I hope that makes it more clear. If it doesn't, you might want to read Dave Wolpert's book "Scoliosis Surgery The Definitive Patient Reference."

Regards,
Linda

P.S. Dr. Bains is great.