Scoliosis, Polio, DNA testing, and surgery decisions

[Guest guest]

It is my understanding that Polio was eliminated from the Western hemisphere in

the second half of the 20th century because of the vaccination developed by

Jonas Salk in 1955. I don't think you can tie the scoliosis now being diagnosed

in our children now to Polio. Researchers believe that it is an inherited gene

and are trying to identify the it through DNA research. I participated in the

DNA testing this last year. You can go to the Axial Biotech web site for more

information. http://www.axialbiotech.com/scoliosis.html If you want to

participate in the study you can contact them through this web site

http://www.axialbiotech.com/participate.html.

I have a first cousin who had scoliosis when she was a very young woman. I

didn't know her as a teenager, so I don't know when she first showed signs of

the deformity. She had surgery back in the beginning when they first starting

using Harrington rods. Surgical procedures were very new and different back in

the 1950s and she did not have a successful outcome. Today surgeons know so much

more and are so much more skilled in the treatment of this disease. It's

important to get the best surgeon you can find...one who has made this his/her

life's work.

Ironically, today I met a neighbor who is a caregiver for her 78 year old

mother-in-law. The MIL has scoliosis that was never corrected by surgery and is

suffering the consequences....collapsed lung, heart problems, she is on oxygen

and is in extreme pain. She is wheel chair bound and lives on pain medications

and a morphine patch. I was not surprised to learn that she is depressed most of

the time. She now wishes more than ever that she had taken the surgery option

when it was still available to her.

When I hear these stories, I thank God every day that I was considered " a

candidate for surgery " still at the age of 66, and I had such a good outcome. I

would just say to do your research and know exactly what you are facing if you

choose not to have surgery. It is not a cake-walk to have the surgery and the

older you are, the more risks you face. Just be as well informed as you can

possibly be and make your decisions wisely.

Patti

Re: Newbie, surgery in 1989, fusion/rods T1-T12,

150 degrees

You know, I'm also 57, and I remember they said my scoli might have been

caused by polio. I think that was something they said back then, cause it was

right after the first vaccinations for polio, and I think they were trying to

find a reason. I really don't think it was, as it runs in my family.

Debbie

Beverlee <bea_simmons@...> wrote:

Hi Diane! Welcome to the group. May I ask how old you are? The reason I ask,

I'm 57 and have been told my curve might've been caused by polio, but I was

never diagnosed with it when I was younger. My scoliosis was diagnosed at around

13, after a car accident that dislocated my clavicle. My mother had noticed that

she was having to hem my skirts on an angle before that! There was not the

attention on catching it in schools back in the Dark Ages :0) like there is now.

My curve is a 'C' to the right, which made the dr think the left muscles might

have been paralyzed by polio. My curve progressed as I aged and was 65 degrees

when I had surgery at the age of 45. Actually, 2 weeks before my 45th birthday,

but who's counting? My surgery itself was OK, the hospital stay not so good, the

after care non-existent. I now have had deterioration below the fusion, which

was T1 to L5. I broke a rod and the fusion about 6 years ago and have to monitor

my time sitting, standing or

walking.

In other words, not flat on my back. I had done pretty well the last few

weeks, but didn't listen to warning signs the end of last week and have been in

bed since Friday AM. I get mad at myself and vow to never let myself get in this

fix again, but when I feel good I can't make myself stop. I really feel guilty

when my husband has to miss out on going somewhere fun because I'm down, or the

Furry Children (3 rescued dogs) don't get the exercise they need. But I'm

blessed with a spouse who never says 'I told you so' even when he should. I

probably would, but I've never claimed to be as good a person as he is! :0) And

the good thing about Furry Kids is that they love you no matter what. I was

being worked up for surgery to extend the fusion into the sacrum when my

insurance ran out, so no surgery. I am on major meds to control the pain and now

have medicare so I could have the surgery. I choose to not go that route unless

I get down and never get back up. Last year, after

Christmas, I was down most of the time until May. I was crying 'uncle' and

about to start back with the surgeon when, miraculously, I got better and better

and better, until having surgery was just a dim, faded memory. I'll keep it that

way as long as possible. Have you had recommendations for any further surgery?

Are you on pain meds? I am a nosy woman. I hope you enjoy the group and the

company of folks who really do understand what you've been through.

God Bless, Bea

kasha117 <harmony52@...> wrote: Hi! I'm new to this group and am

happy I've found you. Right now I'm

kind of curious (w/o going back reading all of the messages) of

people's degrees of curvature, reason for the Scoliosis (mine was

having Polio at age 2!), surgery experiences, rods or not (and why

choice?), etc........ In a nutshell, I had to have 2 surgeries

within the same stay, 7 weeks (1st - Thoracoplasty; 2nd 3 weeks later -

surgery to apply Cotrel du Basais(sp?) rods) and needless to say, that

was no picnic!! Believe it or not, I never had pain before the

surgery... only after, but I can't regret having had it done as, at

this point so many years later, I probably wouldn't be alive as it was

already compromising my my left lung! I'm now using a Bi-Pap machine

at night to help ventilate my system (I retain too much CO2). I look

forward in hearing back from anyone.

Peace, Diane