PDA

View Full Version : new with questions



lyric1863
04-28-2008, 02:42 PM
Hi all,

My husband has scoliosis/kyphosis. He has had scoliosis since childhood but has never been treated. He is 56 years old. Lately his breathing has become much much worse. He has had numerous pulmonary function tests which support the decrease in lung function. To add to his troubles, he also has had lymphoma in the past and that treatment included radiation therapy and a bone marrow transplant. The radiation therapy damage also contributes to the decrease in lung function. The doctors however believe that the worsening of the scoliosis is the main cause of the restrictive airway disease.

We have been from doctor to doctor to explore options and have just now started on the quest for a scoliosis specialist. We live in the upstate NY area.

From reading the forums it appears that some people are reporting a decrease in lung function after the surgery. I was under the impression that the surgery would help his lung function. Has anyone had the surgery for the purpose of increasing lung function and if so has it helped?

My husband has valid concerns that his ability to move after surgery will be greatly reduced. Although in all honesty his range of motion right now is less than desirable. But, can one after surgery comfortable sit (or slouch :) on a sofa or is one confined to a stiff upright position?

My husband is almost wanting to completely dismiss the idea of surgery after he read somewhere that a urinary catheter is in place for weeks. Is there any truth to that?

Does anyone have a good list of questions that you would ask a doctor? My thoughts seem so jumbled right now.

Thanks!

Susie*Bee
04-28-2008, 04:30 PM
Hi Lyric! I can't help much with answering your questions, but mostly wanted to say hi and let you know I'm thinking of your concerns. And I'll try to hit on some of your questions... My understanding is that there are some excellent doctors out your way, and I'm sure some of the NY people will respond with names and locations. Yes, it is very smart of you to start searching for a scoliosis specialist. Good move!

Some of your questions I think are dependent on what surgery your husband would be having-- what levels would need to be fused, what approaches (from the front or from the back), and so on. This is what I understand is the situation if someone with serious scoliosis doesn't have surgery... As the degree of curvature increases and the rotation advances, your lung and heart "spaces" are decreased, compromising their ability to function. I myself have not noticed any decrease in lung capacity from my surgery, and I didn't have any decrease in lung function prior to surgery. Some other thoughts about postponing surgery: as you age (as in 50s, 60s, 70s) your bones may become more brittle, you may develop degenerative disc disease, there may be shifting of lumbar vertebrae, you may develop stenosis (compromised space for your spinal cord), etc. I think these things just get worse with age, so if there is a problem that needs to be addressed, it would be better to do so in your 50s rather than late 60s, etc. Otherwise your condition may progress beyond what can be helped surgically.

Moving after surgery-- for some of us, recovery takes quite awhile. I think I'm doing fairly well for someone my age and with my previous capabilities (not super active, but getting around pretty well, etc.) I feel more limited still now, but am making more and more progress. I am sure my physical abilities will continue to increase with time. Physical therapy has been very beneficial. Sitting on the couch comfortably? I think I do. I sit on an extra cushion (a coccyx cushion because sometimes my tailbone bothers me) and have a (bed) pillow behind my back. No, I can't slouch. My fusion is long. But I feel like I'm sitting pretty comfortably and relaxed. :)

As far as the catheter goes, I would imagine it wouldn't be any different in a man than in a woman... and they removed mine much quicker than I would have liked! :rolleyes: They took it out on day 2 or 3 after my surgery. It was much nicer to not have to think about it-- or plan ahead to call for help to get up and go to the bathroom. That was a really difficult task!!! :eek: Anyway, I have not heard of anyone having a catheter for very long, but maybe that's not something that's talked about.

As far as questions to ask the doctor go-- there have been a lot of posts dealing with that. I'll try to find some. There are some good books-- and at least one of them has a good list of questions to ask in it. It's Scoliosis Surgery: The Definitive Patient's Reference by David K. Wolpert.

You will probably get a variety of responses, and so can weed through what you want. These are just my thoughts and based on my situation. Best wishes as you and your husband explore the possibilities.

Susie*Bee
04-28-2008, 06:33 PM
Here's a link to the thread about questions to ask the doctor. There are probably others as well-- maybe someone who remembers them can post too-- or you can try doing your own searches. This should at least get you started. And sorry I wrote so much in the last post!!! That's one of my BIG problems! :rolleyes:

http://www.scoliosis.org/forum/showthread.php?p=57797#post57797

loves to skate
04-28-2008, 07:18 PM
Hi Lyric,

Susie Bee is a great resource person. I've learned a lot from her posts and you will also. The catheter comes out when they take the IV out, for me it was 2 or 3 days. We were on drugs, so who remembers exactly? What a relief. The only situation where they leave the catheter in for a long time, up to two weeks, is after prostate surgery. So tell your husband not to worry about that right now. I'm so glad you found this forum before your husband has surgery. It is amazing how much people like Susie Bee and others care about other people who need to know as much as possible before having a major surgery like this. I am not too comfortable sitting on a sofa in the evening yet, but it isn't too bad during the day. I really don't mind sitting on a firm chair in an upright position. My best to you and your husband.
Sally