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View Full Version : A New Phase of my Scoliosis



Carole
05-27-2005, 08:07 PM
First of all, I want to thank Karen for reminding me of this wonderful place! I should not have stayed away so long. Naturally, I am having new problems!

After feeling pretty awful for a number of months, I was visiting one of my favorite doctors, who just happend to wonder about my oxygen saturation. Of course, he had called in my husband, who helped him along by tellling about all the times I've forgotten things, etc.

It turns out that my O2 saturation was only 82%! Need I mention how frightening I find this? Yes, I have been put on oxygen 24/7. There was already a room air converter in my bedroom to be used with my BiPAP machine, which I use faithfully every night. This is different. I had no idea how difficult life is when one must pull around an oxygen tank, no matter how small, when one is going about the ADLs.

This has been my first week using 02 24/7. I must say that my feelings vary from "Oh, this should really help!", to "Gosh, am I reaching the end?". Then I do remind myself that, one way or another, we all are reaching our end. Depressing though; I'm sorry.

Is anyone else in this boat with me? I am so new at this; I could use some tips!

Hello to all,
and my best wishes to all,
Carole M. (the elder) :p

lindabar
05-29-2005, 07:58 PM
Hi Carole,
I had cervical spine surgery in February. Two weeks later I was in the ER because I had chest pains and they did blood gases. My PO2 was 72%! The intern said that it could be low because of the scoliosis ( I haven't had surgery yet) or because of a blood clot. They did some tests and ruled out the blood clot. When I told my primary physician about the 72, she said that it was because I just had surgery. No one offered me oxygen. I do get out of breath, but I can't believe it was that low. I see the surgeon next week and I'm going to ask him about it. In the meantime I've been feeling badly. I can hardly get the housework done, I have little energy for anything else. Walking the dog exhausts me. The only chair I can sit in comfortably is the computer chair. I hope the scoliosis surgery helps, it truly is the last resort.

Link
05-29-2005, 09:57 PM
wow some wierd stuff... how old are you?

Carole
05-30-2005, 07:42 PM
Gosh, if I give my age, you'll probably "write me off" and say that is the reason! I think the reason is that my rods are not doing their jobs. When I had surgery in 1992, the upper curve was 99 degrees and the lower was in the high 80's. I think that is what is causing my breathing problems.

I went for a checkup in December and thae whole thing was unremarkable. And by that, I mean the doctor. He was very disinterested in me, or my situation. My husband stayed through the whole visit and told me afterward that he never understood why I made a second appointment with him when the first one had gone exactly the same way. And guess what! My husband was right!

I do not understand why a doctor would tell a person how bad things are and make absolutely NO comment about possibly changing them!

What about you guys? Should age make such a difference? I am a young 70.

Hoping to hear from you,

Carole

Karen Ocker
05-31-2005, 09:20 AM
Corrective surgery is being done in healthy 70 year olds by my surgeon(Boachie-Adjei).

I had successful revision surgery 2 2/2 years ago at age 60 for an un-instrumented scoliosis operation done in 1956. Despite the earlier fusion at age 14 my curves increased and I developed breathing problems by age 59.

Dr. Boachie told me not to wait because I was rapidly getting worse. I thought to myself "How bad do I want to get? I do not like the way I am now." Three months later, which was the earliest I could schedule it, I had the revision.

There comes a point when it is too late for help. Breathing difficulties are a serious marker; it becomes "now or never" because obviously breathing is necessary for life. If the breathing becomes too impaired a person cannot tolerate the anesthesia necessary to perform the procedure.

I thing being a nurse-anesthetist by profession helped me to see the writing on the wall before my GP. I went to him for the "shortness of breath" and he told me "there are a lot of heart/lung issues with scoliosis". I told him "I know!'. I had a pulmonary heart and lung stress test; the cardiologist said it was from my scoliosis - no problem with the heart. The cardiologist said something about "pulmonary rehabilitation" but I was already walking 12 miles a week to try to help my breathing and it still was getting worse

ABSOLUTELY NO recommendations were made to me how address the scoliosis!!!!!!!

I decided to go on-line to an earlier version of this forum and post my situation. Bless Linda Racine for suggesting I see a revision doctor.

In the meantime I went on my own for a pulmonary function test which showed 30% reduction in lung function. Armed with all these test results I consulted Dr. Boachie and had the revision.

Results:
Recovery was long. My breathing is much better but it took a long time for it to improve because the surgery itself reduces breathing capacity for 2 years afterward. I was able to go hiking in the Alps last June(2002) at 6,000 feet altitude. I am working and pain free.

Karen

Carole
05-31-2005, 05:58 PM
Karen, I am with you in that I believe that Linda Racine is the best! I have a pulmonary doctor whom I see once/year who actually felt I was doing very well the last time I saw him. This being put onto oxygen 24/7 happened very quickly after several oximeter checks over a periold of a couple of weeks, and the fact that I was "definitely not with it". I was literally leaving, in a way. I am doing much better, although I still stumble over words quite a bit. I will see my doctor soon for further check ups.

I have to admit, I cannot remember where are the doctors who did your surgery, even though their names appear here all the time! Fill me in?

Thank you so much!

Carole M. (the elder)

LindaRacine
05-31-2005, 08:48 PM
Carole...

At least YOU have an excuse for not remembering words. ;-)

--Linda

Amazed
06-01-2005, 01:04 AM
I am nearly 54 and have a completely unbraced and have had no surgeries. My curves are 150-88-50. O2 tanks and hoses and oxygen seperator, nebulizer and a brand new Biap machine all currently reside in my bedroom. I am ticked off about it but my husband says if he gets to keep me longer its worth it. He is a sweetie. I hope its just my ego that won't let me get used to Bipap mask. I feel like a scuba diver or something. I even made a sexy cover for the machine and it still chaps my hide. Oh, I don't know its just that I had never pictured my marital bedroom full of medical equipment. I'm not sure if anyone would ever do surgery on me as my lung function is around 12% -15% so far the two docs we've talked to say no - too risky. So maybe these machines are my only hope. On good days I tell myself I am stubborn enough to stick around a lot longer..Its good to hear that there are others out there like me. Anyway Carole M I think we should know each other.Email me Jeaneng@cox.net

Carole
06-01-2005, 07:17 PM
Linda,
I didn't realize that you were a wize guy! Ha! Ha! My kids think that my mind has been "gone" for years! That's what happens when they grow up and get more educated than their parents!

You know, I really am struggling. It may not show here, because I work it out before I hit the keys! Earlier in the year, I took all my Respiratory Therapy tests, and was told that I had actually improved a little! This is what I do not understand, even though I do feel so much better on the oxygen!

Was it you who thought I might not want to get this ten pound Jack Russell terrier which I am seriously considering? Do you have animals? Did I mention that I adopted a "feral" cat nearly three years ago now, and she is just the love of our lives. My husband is a dog person, yet, with our dog gone now, he absolutely idolizes this little female calico. I think most calico cats are female.

I am not at a good place in my life and I am aware of that. For some reason, I think it may be making me unreasonable? You know how old I am. The Urologist I saw today at Mass General said, "Wow! You got to 70!", which he thought I would never do. He did a ten hour surgery on me to clear away old adhesions and take down my useless Indiana Pouch and give me an ileal loop (urostomy). He reminded me today that mine is (unusual).

Would you do what I am doing, and satisfy silly wants/needs? I'm sure you don't know because you are so much younger, but you also are so much smarter. So, you are the lucky one who gets my questions!

My love to you,

Carole

LindaRacine
06-02-2005, 12:11 AM
Hi Carole...

No, my original advice was to avoid puppies. Weren't you interested in bichons? They usually make much better pets than Jack Russells. Animals can be a lot of work, and I would really be concerned about you taking on a Jack Russell. I'm sure that you know that they can be a real handful. Whatever you decide, it's a big commitment. My advice would be to be sure that you're prepared to give the new dog all the time and attention needed. Only you know what's right for your family.

By the way, I have cats and chinchillas. I'm really a dog person, but don't have the lifestyle for a dog. So, I get my fix by volunteering at my local humane society. :-)

I'm sorry to hear that things are not great for you right now. With all of your health problems, I'm amazed that you stay as mentally healthy as you normally do. I hope things get better soon.

Regards,
Linda

Jacque's Mom
06-02-2005, 10:11 AM
Carole, Linda is right, Bichons are great pets - mine just turned ten last week! As adorable as they are, they do have their health issues too. "Coconut" just had cataract surgery (I know, crazy pet owners) as he went completely blind in three weeks as a result of his diabetes (which we have to give him two shots of insulin per day for the rest of his dog life!). Then believe it or not, after one month with that lovely cone on his head, finally took it off and two days later, he couldn't walk on his back leg. Back to the vet only to find out he tore his ACL and yes.....surgery to repair. He goes to the doctor more than me now (hey, no complaints here)! Thank God for pet insurance! No matter how big or small, cute or otherwise, they are work. When our daughter left for college in September, we still felt we had a "child" at home. He is part of the family and keeps us going. They do feel your pain - when I had my surgeries and was in bed for a few weeks, he would never leave my side - very comforting. Hope you're having a better day. Good luck with your pet decision. LYNN