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View Full Version : Seeking thoughts and/or suggestions!



whitney81180
05-11-2005, 11:34 AM
I am bout to have my second appointment with a specialist in Missouri. Recently had an echocardiagram performed and found that my right ventricle is somewhat dilated with mild pulmonary hypertension. This is probably directly from my scoliosis. Double S curve 50 degrees at both measurements.

My dilema is that I have no pain at all but I am terrified that it is doing something to my heart. No doctor seems to be taking me seriously. Does anyone have a similar situation or advice. I am 27 and sometime feel like I only have a couple years left to live.

I am scared.

Thanks,
Becky

LindaRacine
05-11-2005, 03:11 PM
Hi Becky...

I'm not a medical professional, but I'm guessing that your scoliosis is not what is causing your heart trouble.

Regards,
Linda

Central
05-11-2005, 04:32 PM
I would be very surprised if your scoliosis is causing hypertension.
Do you have a family history of hypertension? Was it a single high reading, or have there been multiple high readings over months? I have mild hypertension too, but it's unrelated to scoliosis.

kathleensrose
05-14-2005, 07:03 PM
I second Karen's statement. I had 75/89 curves before my
operation with no breathing problems. You are still in your 20's with small
curves. Now that I have had my surgery, I have developed the belief that a person should have really sound reasons for surgery as there are a number
of things which can go wrong. ( once you buy a ticket for this surgery, there
is no going back.) Kathleens rose

tommyo
05-16-2005, 06:32 PM
Kathleen,

What would constitute a good reason for having surgery? I am a 52 year old male with 50T/40L. i have led a fairly normal life. Weightlifting for fun, construction worker (plumber) until two years ago, raced motorcycles for 30 years (alot of crashing) and had some kind of back pain for the past 25 years. now i'm getting constant tingling and burning, I think from a pinched nerve, and my curve has progressed steadily over the years. time for surgery?

LindaRacine
05-16-2005, 11:00 PM
Tommyo...

You might want to take my "Should You Have Surgery" quiz:

http://www.scoliosislinks.com/ShouldYouHaveSurgery.htm

Regards,
Linda

Amazed
05-19-2005, 12:51 AM
I am living proof that you have a few more years to worry about stuff. I have 3 curves 150 -88-55 I have never been braced or casted and I have never had surgery. I do not recommend doing nothing. There are many reasons I did not have surgery : from bad medical advice, being in awe of the medical field, I wanted gurantees, I didn't have the time and that I was bullett proof. My best advice now is to get more than one medical opinion on any medical procedure. Keep copies of your own records and have hope. I am 53 rapidly approaching 54, I have a 28 yr. old daughter, A husband, and the cutest grand son who is 6 months old. I am on Oxygen full time and sleep with a bipap on. But I am hanging in there and there are more people out there like me.

kathleensrose
05-20-2005, 10:02 PM
tommy:
I am not an expert. My opinion is only an opionion. However, remember,
surgeons make their living from surgery. They cut and sew. They do not have
to live with the results of surgery, you do. Your curves are not very large.
You are also very active even though you have occasional pain. You
cannot reverse a back surgery and you will never have the flexibility you
have now. If I were in your place, I would try many chiropractors until I found one who is gentle and helps the pain. Try actupuncture. You will spend nowhere near as much money on this route as you will on surgery. Put it
off as long as you can reasonably do so. My chiropractor kept me off the
operating table for 15 years.You can keep in touch with your surgeons with
xrays but don't jump for surgery just because a surgeon wants to do your
back. Life will be significantly altered if you have surgery. Your ability to do
plumbing, car racing, etc., will be curtailed. Kathleen

Central
05-20-2005, 10:41 PM
You seem to be very against surgery. You had your surgery only 3 months ago, right? So you are still in your recovery period. Why do you advise people with smaller curves not to have surgery? I am planning on surgery, although my curves are only in the 40s, and I am quite young (24). I'm really interested in learning a little more about your perspective as to why you advise against surgery from your experience.

tommyo
05-22-2005, 07:49 PM
I have not been advised to have surgery. In fact the ortho I went to originally told me to wait until I am 60. I am now going to a scoliosis expert who I saw 25 years ago for a second opinion and may get another. I am going for my second epidural next Thursday because the first one didn't work.
I am no longer active. I had to take a job as a plumbing inspector at a much reduced salary because of the back pain. I gave up motorcycle racing two years ago. I can only do certain excercises with weights and not many. I can only walk for ten minutes, the last two in bad pain.

suejeryl
05-22-2005, 10:41 PM
hi, tommyo...you mentioned you think you have a pinched nerve; i had pinched nerves as well and i limped along thinking it was sciatica for 2 years! my fault; i was hell bent on avoiding surgeons at the time. i found a wonderful pain mgmt. specialist who administered epidural injections but made sure i understood that relieving the pain was not the same as fixing the problem. i took his referral to a surgeon in whom i had complete trust the minute we met; he offered to try surgery just to relieve the nerves, but felt my spine was in very bad shape. i had 40 years of hearing that behind me, so i believed him. so i decided to have my scoliosis fixed as well as the nerve problem. the point here is (and i do have one) is that maybe you can just have fixed whatever structural issues are causing the pinched nerves. who knows? and btw, i feel great at 8 months post-op, but i tried everything...and i mean everything...before having surgery! good luck....

kimbo
05-23-2005, 12:17 AM
hello..
i am a 46 yo female with a 66 deg T/55 deg L compensatory L curve.
Up until a couple of years ago I was virtually pain free.
The last couple of years I have had a little pain here and there and decided to consult with a spine surgeon who informed me the"grim" prognosis of the severity of my curve. He advised me to "sttronly consider" the fusion major surgery. He is not a scoliosis specialist either..
I had NO idea my back was that bad and since then my back has been hurting a lot..almost a phycological response..it seems ..
Well..I have read thru many of these boards and weighed the pros and cons and I am NOT having any kind of surgery unless it is life threatening. The possible consequences at this stage in my life are too great.
I am currently a very active person..hiking every weekend, holding a fast paced fulltime sometimes physically demanding job.
I can't imagine going in and being layed up for months and even then..may have to redo comething all over agin a few years later...
I do have a large progressing curve with a larger rib hump..but I can't justify risking my current quality of life even though my pain has increased..some of which may be stress related due to my axiety over it..
I feel also I pinched a nerve somewhere as I have a burning feeling allover my back and neck at times or whatever it is..
I am trying to do other things like yoga..and staying active at all times..I may see an osteopath..
A surgery for me would be a last resort..I have had two other major surgeries in my life but they were life threatening.
The scoliosis has not affected my breathing much as am able to do mod/ strenuous hikeing etc....my heart is OK at the moment and am monitoring it on a bi-yearly basis.
So..like someone said..
Once you do it..you can't go back..but..
Each person is different...and it is curious why some people with smaller curves are in such bad pain and others like myself just beginning to ..

kathleensrose
05-23-2005, 10:44 AM
Central:
The biggest reason for my scepticism about the surgery is the possibility of
contacting a staph infection later on through some other surgery, (arm, leg, even dental cleaning, any operation). Some one correct me if I'm wrong about this, but staph is exquisitly attracted to metal in the body . If staph is introduced into the body by any of the above mentioned methods, now , or 10 years from now, its tendency is to travel immediately to and along any metal in the body. The consequence of this is all the metal must be removed. There are other people on this forum who are experiencing this now. Maybe they will offer their experiences. Would I have had the surgery done had I known about this
possibility? No! My curves were 85 and 70, I walked a little crooked, but
I was able to do everything and very healthy, no lung problems.

kathleensrose
05-23-2005, 10:57 AM
Central:
The biggest reason for my scepticism about the surgery is the possibility of
contacting a staph infection later on through some other surgery, (arm, leg, even dental cleaning, any operation). Some one correct me if I'm wrong about this, but staph is exquisitly attracted to metal in the body . If staph is introduced into the body by any of the above mentioned methods, now , or 10 years from now, its tendency is to travel immediately to and along any metal in the body. The consequence of this is all the metal must be removed. There are other people on this forum who are experiencing this now. Maybe they will offer their experiences. Would I have had the surgery done had I known about this
possibility? No! My curves were 85 and 70, I walked a little crooked, but
I was able to do everything and very healthy, no lung problems.

Megan_aust
05-31-2005, 05:23 PM
Hi Whitney,

It's probable that your heart problem is separate to your scoliosis. Scoliosis usually doesn't cause heart problems unless it's over 80 degrees. I have scoliosis and a congenital heart problem, and both of my specialists (cardiologist and orthopaedic) agreed that although scoliosis is more common in people with congenital heart problems, one doesn't necessarily cause the other (we're just lucky).
If I was you, I would get an opinion from a cardiologist about how to treat the heart problem (medication or operation), before I had an operation for scoliosis. I have had 3 operations on my heart and none for scoliosis, even though my orthopaedic surgeon recommended it. I feel like an old person sometimes too, but I just try and do what I can!

Lavinia
06-01-2005, 05:11 AM
My surgeon informed me of this danger just after my surgery! However, he says that provided an antibiotic drink is taken 1 hour before any dental or other invasive work (even dental hygiene work) the risk is minimal. I have spoken to my dentist about this and he knew all about it.

Lavinia