Hello and Happy Friday

[Gerry]

My kypho scoliosis (up my left side) was a congenital birth defect. I'm 72 years of age and never had surgery. I wear a lift on my right shoe. In the beginning I was in the hospital for about a year with the only treatment available at the time....sunlamps and braces. I remember my torso being in a plaster cast for awhile. That was no fun; I was growing, but the cast wasn't. Then they tried leather strapping. This was back in the day, probably 1937.

After all they did, nothing much had changed. They wanted to do spinal fusion, which was experimental at the time. My mother refused, saying that she rather leave it up to me when I was old enough to decide. She brought me home and I just lived my life, but was very much overprotected, for fear I would get hurt. I worked and drove a car and married a nice guy. I never had children of my own. Surgery, to me, would be out of the question, especially at this late date.

I have developed pulmonary problems, for which I am being treated, and of course, as I age my curvature becomes more and more a problem (getting comfortable to sleep at night and needing oxygen at night). Looking good in my clothes has always been a problem, but breathing now is my main concern. I'm trying to remain contented while at the same time knowing my days may be numbered. When your breath runs out, life is over.

It's good to meet all of you and I hope to post here as time permits.

[Pooka1]

Hello.

Have you been told surgery is out of the question for you at this point? It may not be. Maybe a few opinions from surgeons specializing in cases like yours would be in order.

Maybe something can be done to help your breathing short of a fusion. Maybe rib removal?

Good luck.

[Gerry]

Surgery for me is out of the question with my breathing problems, but at my age I would not consider it anyway. When you are dealing with the spine, it's a very serious thing. I am able to walk and have virtually no pain. I rather stay the way I am than have surgery and perhaps end up worse than I already am. I have a bony mass where my ribs should be on my right side, so I have no support on that side. To remove a rib on the side of the curve would be lessening the support I have there, so this would not be a good thing for me. I must look at the financial part of this too. My husband and I are senior citizens (he's 82) and live on a fixed income. But regardless of anything else, I don't plan on any surgery. I'm just following doctors orders now and that's what my plan is. I've lived my life as well as I could, and now I leave it in God's hands. I'm happy with who I am and that's all that matters.

[Susie*Bee]

Welcome, Gerry!

Gerry-- you sound like a wonderful person who has managed all through life to make the best of what was dealt to you in the way of big scoliosis challenges. I appreciate your positive spirit and acceptance of the way things are. We are here for you-- to be your friends and provide whatever support we can. I'm so glad you found the forum. Take care-- Susie

[debbei]

Hi Gerry,

Welcome. First of all, I want to say that I truly admire your positive attitude. You have dealt with the cards you were given and lived a normal life. I would think that having this condition at your age and being pain free is just a bonus. My maternal grandmother also had scoliosis and I remember her last 15 years having terrible pain, wearing braces, being on high-test pain meds. That is one of the reasons driving me to surgery.

I was also amazed to read the treatment that you were given back in the 30's. I would love if you had the chance to go into more detail on that. I'd never heard of sun lamps for this condition! My goodness!!

Take care of yourself, and I hope you continue to remain pain free.

[pathvet]

Welcome!!

Hi Gerry!!

I have a similar condition- congenital scoliosis due to a birth defect- and I am limited in my options as well. Surgery is not always the best option for everyone. In my case it is consider a salvage procedure- no chance of curve correction,etc. I applaud you for your courage. You will find that ALOT of people on this site have had great success with surgery for scoliosis. When I read alot of the posts, I feel like I'm the only person that the doctors won't cut into. (After all the docs I've been to, I'd now be wary of the doctor that claimed they would do the surgery!)

I am also trying to live a "normal life." I know I'll never be a runway model and that my clothes will always fit funny- but to know that you are happy and relatively pain free gives me hope. I am 31 years old and I worry alot about future pain and mobility.

Thanks for joining the forum and please keep posting!!

[Susie*Bee]

Hi Gerry (again)-- I've been wondering about the sunlamp thing too-- was it thought to be similar to rickets-- lack of vitamin D??? and they thought exposure with the sunlamp would help??? (Just wondering out loud here...) I agree that it would be interesting to hear more about your past experiences and how it "used to be"-- if you are interested in sharing.

[Gerry]

What a wonderful group of people you all are!!

Thank you for all your welcoming replies, my friends.

I think one of the reasons I am able to maintain a positive attitude is that I am NOT in great pain. I thank the good Lord for that, debbei. I applaud you for your decision to have surgery. If that is a viable option for you, then I say, "Go for it". My spine is getting weaker, so I don't stand in one position for very long, and I use every chance to lean on something, and I do use a walker when I walk down the long hallway from our apartment to do laundry. It's getting more difficult because of the breathing problems. I will talk to you more later about my treatments, debbei.

Pathvet, it's not easy going through life with congenital scoliosis, is it? I am only 4'4" tall approximately, and shrinking all the time....geez, pretty soon I won't be seen at all... I know what you mean by how our clothes fit funny and just about everything is just a little more difficult for us than others. I have a severe case of scoliosis, and have bones where I shouldn't and no bones where I should. Seeing an x-ray of myself, I wondered how I function at all. Please don't worry about whether you will have great pain during your life, pathvet......just assume that you won't have pain. That's how I did it. From the time I was a child, I acted as if I were normally built, instead of worrying about my future. And even though my mother did her best to keep me tied down, I went ahead and got a job at 17 yrs old, and then we bought a car......and I was on my way to being a normal person. I admit finding a husband was a REAL challenge!!!!!!!!!! But I found him when I was 48 yrs old. As Jesus said, "Be it done unto you as you BELIEVE."

I hope to be able to relate my stories of life, if it is acceptable here, as it relates to scoliosis.

Susie*Bee, I'm glad I found this forum, too. You all are very supportive and encouraging.

Pooka1, they won't do surgery on me for scoliosis or anything that can't be done with local anesthetic.....because of my breathing problems. It's OK. I've spent all my life like this, and as long as I am not in pain, I'm OK with it.

Talk to you later, friends.

[Gerry]

I was wrong

My hospital records say that as a toddler I had helio therapy, which I thought was a sunlamp. Today I found out it means they allowed me to sit in the sunlight a lot. So please accept my apology for misinterpreting the therapy I had. It's hard to know if the sun is good for you or bad for you these days.

[Susie*Bee]

Hi Gerry! That is sooo interesting about the heliotherapy! I'm speculating, but I bet it was based, at that time, on the vitamin D knowledge and the need for it in preventing "soft bones" as in rickets-- and I guess scoli as well... Hmmmm.

You sound like such a spunky gal, even if you are only 4'4" tall! Although I don't really know you, I feel a glow from the little glimpse of that strength you've exhibited in your life! I'm proud of you!!! It sounds like your mother would have molly-coddled and protected you from real life, but you took the bull by the horns-- and lived life to the full. Wow! That takes a lot of "moxie" -to use a really old term. I loved your comments about finding a husband. Now THAT'S an excellent example of faith and patience!

I know I would love to hear more-- and I think it would be beneficial to a lot of us to understand about the life and times of a "mature" scoli-challenged woman who dared defeat the obstacles thrown in her path... You are obviously a woman of strength who has battled many enemies over the years-- through times of weakness, thoughts of despair, and myriad emotions-- and come out on top. That can't help but buoy up many who think they're up against so many challenges now. And it would be so interesting to learn what was once in vogue for the treatment of scoli...

I also realize you are still facing many more challenges, many that will keep growing stronger-- I can't quite picture how you are managing the laundry bit with your walker, but know you've found a way for now. When you need support for your struggles, we are here. It's a good place to just share (good and bad) how you are feeling, the struggles you are up against, the victories and defeats you have... I have discovered that, in general, when you are down it really helps to know there are people on the forum that will listen, sympathize, and provide the support you need to help you back up. There have been so many that have helped me-- and I appreciate them so much. You will too, I'm sure. Take care! Susie

[Gerry]

You are probably right, Susie*Bee, about the doctors doing what they knew how to do, based on Vitamin D knowledge at that time. They sure didn't know much about how to deal with me for sure, as if a plaster cast could change anything. I also recall my mother telling me that they put weights on my legs to try and lengthen one. The fact is that both my legs are the same length.....it's the tilt of the hips that makes one seem shorter than the other. In any case, after my hospital experience, I received no further scolio treatment.

In my adulthood I was around 4' 8-1/2" tall, but as I aged, gravity compacted my body, and I shrunk!! Now it aggravates my breathing because I already had a limited space in my chest area. I have one lung smaller than the other, too. Basically no ribs on my right side, just a boney mass.

Thanks for all your kind words, Susie*Bee. I always felt I did have a little spark (or glow, as you said) inside me, which I attribute to my religious upbringing. I am Catholic, and went to Catholic schools for 12 years. I work on my spirituality, too, and I read many other things besides the Catholic view of it. It gets me through, realizing there is something wonderful waiting for me when my life here is over...and that whatever discomforts, disappointments, and other sufferings I have here...it will be more than worth it in the end. My mother only did what she knew how to do.....protect me from being physically hurt. My father was gone by the time I was around 2 or so.

Now finding a husband....that took awhile. I kissed a lot of frogs before the prince showed up!!!! I have outlined it all in my memoirs, especially my fairytale romance with Adam, the miracle nobody ever expected. Even my Uncle Jerry (a Catholic priest) said he never expected that I'd be a bride. I said to him, "O, ye of little faith." hahahhaa Well, I figured with the millions of people in the world, there had to be someone out there for me....right??

I would love to be able to help others become more content with what they have, instead of being devastated by what they don't have. Everyone needs to love their own life story because each story is unique and beautiful. And, again, thank you so much for your kind words about me, Susie*Bee.

My husband and I live in a building for people age 55 and older....and the center of the building is where the community room is, and close by that is the laundry and the trash room........but we live way down one hall, so usually I take the 3-wheel walker down there. When I do the laundry, though, I take the grocery cart with the bags of laundry in it.....which acts as a walker for me in that case. I can walk alone, but I am not as steady on my feet as I would like to be. So I can put the laundry in, and then transfer it to the dryer, as need be. When it's finished I take it back to the apartment and fold it. I probably should use oxygen when doing it, but so far I haven't.

Yes, I face the worst part of my condition, but not sure when that will be yet. All I know is I don't want to be gasping for breath as I leave this world. I want to just go to sleep and meet my Maker. Then I am home free and in better health than I ever was. And....IF there is such as thing as reincarnation, I am not coming back for a looooong time!!!

It's comforting to know I have a support system here when times get rough.

Here is a snapshot of Adam kissing his new bride (me) after my Uncle Jerry (Fr. Jerome Dukette) married us. You can see how little I am here:

http://pixie36w.bravepages.com/PIXIE...issesBride.jpg

[Qikdraw]

That takes a lot of "moxie" -to use a really old term.

I think we should bring back some old terms and make them popular.

Gird your loins and hide your girth, now thats swell!

Ok, maybe not. lol

Brad

[Qikdraw]

[FONT="Arial"][SIZE="2"][COLOR="Navy"]In my adulthood I was around 4' 8-1/2" tall,

Are you saying you're no longer an adult? Maybe since you are getting shorter you are entering your second childhood?

Now it aggravates my breathing because I already had a limited space in my chest area. I have one lung smaller than the other, too. Basically no ribs on my right side, just a boney mass.

I understand what you mean. I had surgery in 1983 when I was 12, and I had to have it then because my curve had already started to cause breathing problems. If it got worse I would not be around today. The ribs on my right side were all deformed as well. They actually removed 8 of them and used them to help fuse my spine, but they did grow back! Pretty amazing what the body can do.

Now finding a husband....that took awhile. I kissed a lot of frogs before the prince showed up!!!!

LOL
Advice given to me a long time ago by an adult neighbour... He once told me that you test drive a car before you buy it right? His wife gave him a dirty look, but that had me laughing and for some reason sticks to me this day.

It's comforting to know I have a support system here when times get rough.

Yes it is. I am finding the same thing. My surgery was so long ago, but I've never had anyone to talk to that really understands what I am going through. Reading your delightful posts is a joy too. You have so much verve its just so nice to read. You're an amazing person with an amazing story, so please keep posting!

Brad

[Gerry]

Hi Qikdraw

A guy with a sense of humor!!!

Thanks for the light hearted post........and I'd love to keep posting!!

[Susie*Bee]

Thanks!

Gerry and Qikdraw-- you were both just what I needed when I got home from doing some work at school (trying to get bulletin boards ready and stuff like that-- and I'm exhausted!) Both your posts had me laughing. You both have wonderful senses of humor. (Or am I just that tired???)