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View Full Version : In my 40s with questions!



AliceL
09-29-2007, 09:20 AM
Hi, I'm 43 years old, was diagnosed with scoliosis at the age of 13, had fusion surgery at 14. At last check in 1995, I have dextroscoliosis of the thoracic spine measuring 45 degrees between T3 and T12. I said at last check because when I went through my treatment during my teen years, I was actually quite new to this country and didn't know much English at all. During the following years, with getting back to school, etc., I never thought to search and see about more information on scoliosis because, fortunately, I've never had any pain before or after my surgery. I carried two boys to full terms without any problems at all. It was back in '95 when I joined a health club, that the trainer recommended that I go see a doctor and ask about what kind of excercises I could do that I started a little search on my condition. But by then, my hospital record had already been destroyed five years prior. I remember searching on the net back then but mostly only found conversations on adolescent scoliosis, not ones that are similar to my age. Being that I've never experienced any pain, I rarely thought about further searching and gaining more knowledge about my condition!! Now that I'm 43, going on 44 in a week, I've been experiencing more tiring in my back, so I came back onto this site to look for information, and saw much discussion. Sorry for such a long letter, but I would love to talk to someone who was diagnosed back in the 70's and had surgery and are in their 40s now. I have a couple of questions.. would my curvature increase with age? I do experience tinkling and numbing sensations on my left arm once in a while, and I read that's because of scoliosis. Is that true? Since I'm experiencing more tiring sensations in my back now, given scoliosis, would that increase with age as well? Will there be other problems as I age? Thanks!!!

LindaRacine
09-29-2007, 02:30 PM
Hi Alice...

There's no way to know for sure if your curve would have increased without going to a scoliosis specialist for an exam. In general, curves <40 degrees don't increase after skeletal maturity, and curves >50 degrees increase 1-2 degrees a year.

You can find a list of specialists here:

http://www.srs.org/directory/directory.asp

Regards,
Linda

AliceL
09-29-2007, 02:56 PM
Thank you for the information Linda! I actually just had another set of x-rays done this past Tuesday to see if my curvature has increased. I should have the results sometime next week. Either way, I do plan on asking to see a specialist, so I could find out more, and possibly get my questions answered. Thank you so much for your reply!

Shari
09-30-2007, 01:56 AM
Hi Alice,

Welcome to this forum!!! We all understand your questions and concerns.

You will find many here that were diagnosed as teens many years ago and have just recently are considering surgery or have had surgery.

We are here to answer any questions and concerns you may have. This is a great place to explore all of your options as well. I have found it to be such a source of comfort, knowledge and support. We don't all always agree, but that's what makes it informative and interesting!!!

Shari

AliceL
09-30-2007, 11:15 AM
Hi Shari,

Thank you so much for welcoming me! For sure I will now keep coming back to this forum for information. In years passed, I've only known of one person that has my condition whom I actually talked to, via phone. The last time I talked to her was 10 years ago!! Yesterday I dug out her number and called her. She called me back in the afternoon and we were able to reconnect. It was wonderful to have someone who understands our condition. And I really look forward to talking to all of you as I find out more thru' my x-rays results I will get next week.

Alice

AliceL
09-30-2007, 12:51 PM
Hi Shari,

I was reading one of your threads just now, and read that you were a recipient of cadaver bone when you had your surgery. When I was talking to my friend who has scoliosis yesterday, who also had fusion like me, back in the 70s, she mentioned that hers was done with cadaver bone, and most likely mine was too. We didn't know that cadaver bones are still used for scoliosis surgery nowadays, not that I know that much about scoliosis treatments now. Is that common, to use cadaver bones? Very Curious...

Alice

crepehanger
09-30-2007, 01:14 PM
I had cadaver bone for my surgeries in June' 07. In these politically correct days they may call it donor bone, but I'm sure it is the same thing. You were quite brave to face that surgery in the 1970's, the only other person I knew with scoliosis before this forum, also had surgery and a full body cast for I think she said a year...she had to have some additional surgeries to fuse above and below the original Harrington Rod. She has flatback pretty bad, too and was stunned when she saw the good lumbar curve the surgeon left in my back. My hat goes off to you brave souls that went through this, before us and, thanks to you, scoliosis surgery is so advanced and better. PS- I was more afraid of the donor bone and blood than anything else, but it worked out really well and I did not have the sore hip I did after the cervical fusion last year. Glad you found us! There are quite a few other members that had similar surgeries to yours- Lisa

AliceL
09-30-2007, 06:45 PM
Hi Lisa, I've been going onto this site for a few days now, and am learning so much more about our conditions!! I have to say that I was Not particularly "brave" when I had my surgery, since I was new to the country, and whatever was told to me and my parents that needed to be done, was done out of fear of not doing anything about it. I hope I'm making sense. My parents didn't know anything much about it at all, and didn't speak any English, so they didn't even understand too much about what was to do done on me. Fortunately, I later learned that actually my surgeon (I even have forgotten his name now that it's been 30 years!!), was one of the top surgeons in the field, and he even went to other countries to teach other doctors how to perform this kind of procedure. God was watching over me! I feel kind of stupid in fact, not knowing that I had a fusion done until I had my x-rays back in '95. When I had my treatments, there wasn't even any kind of support group that I know of, and of course I wouldn't have known how to reach out to them anyways back then.

Nowadays, with medical technology having gone such a long way, people with scoliosis and any other medical conditions are SO fortunate to have the resources, and people like you, to quiet their fears, and share knowledge, etc. My treatment mainly consisted of having casts through a one year period, one before my surgery in X-mas of 1977 and three separate ones after. I look forward to reading more on this site, and talking with all of you...

rainbow2010
10-01-2007, 06:04 AM
You were lucky they used donor bone. My surgery was in 1975 and they shaved my hip bone. My daughter's doctor used donor bone on her. Getting a check up from a doctor that specializes in adult scoliosis and the aging spine would be the best thing. I have a lot of wear above and below my fusion that I am getting treatments for.

my donor bone is named "sir francis" (that's from my daughter who was reading over my shoulder.)

AliceL
10-01-2007, 09:33 AM
Hi Rainbow, thanks for your post!

I've been feeling a little bit of pressure on my upper back in the last couple of days. Usually if it's muscle related, after putting on Ben Gay after my shower at night, I usually feel fine the next morning. But not this time.. :-( I'm getting a little concerned knowing that there will be wear and tear even though I've had my surgery so long ago. But come to think of it, there of course will be wear and tear since the normal portions of my spine is doing all the work while the portion that was fused is rigid. I'm checking to see whether I've gotten the results back from my x-rays. Hopefully it doesn't show increase in curvature, but I guess maybe that's wishing for too much..

Can you tell me what kind of treatments you are getting for the wear?

rainbow2010
10-02-2007, 05:56 AM
They are doing nothing for the base of my spine as it is fusing itself. For the T7-9 area, I have had steroid shots to reduce swelling, then a nerve root block and finally (hopefully) a nerve facet joint abulation. The last is where they go in using a needle guided by xray to get to the bad nerves and then zap them with radiowave to burn the nerves so they won't work any more. That took about 6 weeks for complete relief. I had real bad pain in my rib cage area, couldn't take a deep breath, and ended up with pnemonia. Since the procedure, I have been able to breathe!! It took some getting used to as I lost my early warning system. I go to a therapy pool to exercise to try to keep the back muscles strong and ease some of the arthritis pain. My curve has never increased or decreased since surgery, but I have lost height because of the discs wearing out.

AliceL
10-02-2007, 08:37 PM
Just got an appt for Oct 17 to see a scoliosis specialist. I'm anxious to find out whether my curvature has increased. Still am having achyness on my upper back, haven't been able to concentrate at work. I am doing some light stretching excercises though, it seems to ease the achyness somewhat.

Shari
10-03-2007, 01:59 AM
Hi Alice,

I hope I didn't mislead you in any way, mine was a mixture of one of my ribs, some hip and cadaver bone. This mixture was used to replace the 5 removed discs and around the screws in the fusion of the rods from T-1 to L-5.

I had no concerns about the combination of bone and have had no trouble at all. Once I found the right Doctor for me, I trusted whatever his decisions were. It took me a while to find him, but once I did I felt at ease. There were things that I didn't quite understand 100%. I'm not a doctor, but my trust and faith in him that I felt in my heart made things easier for me. I hope that makes sense!!!

Shari

rainbow2010
10-03-2007, 06:08 PM
Try a heating pad to help ease the pain. I exercise at a therapy pool where they keep the water at 90 degrees. Soaking in warm water helps the pain also.

AliceL
10-04-2007, 08:40 PM
Hi Shari, no, you didn't midlead me... I was just curious about the usage of cadaver bone 'cause my friend who also has scoliosis was at one time told by a nurse that she has never heard of our kind of treatment. So I thought I'll ask about it...

Hi Rainbow, thanks for your tip! I have been trying heating pads, warm baths, etc., but nothing has worked so far. Not even taking Motrin.

I have, however, received the results of my x-rays taken last Tuesday. The report shows a slight disc space narrowing, and there is anterior spondylosis. The doctor who read the results, however, did not provide the degrees of curvature, so I still don't know whether it has increased or not. I have written back to my family doctor, who gave me the results, to ask him for more details.

Alice

Kudzu
10-04-2007, 10:46 PM
Hi Alice,

My story is similar. Was diagnosed with congenital scoliosis when I was 11 yo. Had surgery almost immediately, a fusion at two levels with bone from my hip & no hardware. Had no back pain before surgery nor any after recovery. At 42 yo found I was shrinking & within two months the pain started. Have no records from my surgery, no idea what my curves were, didn't even remember what levels the fusion was done on. Hospital employee actually laughed when I called to ask if they still had my records from my 1975 surgery. One thing Mom & I both remembered was that at a follow up visit when I was around age 13 yo the surgeon said he thought I may need a second fusion because of the possibility one of my vertebrae may slide sideways off the one below it & that could damage my spinal cord. Over the years I'd convinced myself I had totally misremembered that.

So at age 42 yo I had my first xrays in over 25 years & to my utter shock I saw quite clearly that one vertebrae actually had slipped sideways quite a bit. Because of radiculopathy that did not respond to physical therapy I had an MRI. I've got disc degeneration, facet hypertrophy, lateral listhesis of 1.5 cm, & stenosis at L3-L4. What is amazing is that I don't hurt more than I do & that I actually made it this long without pain. I have been truly blessed.

Good luck with your appointment!

AliceL
10-05-2007, 12:38 AM
Hi Kudzu,

Thanks so much for writing me! I did a search using "fusion" and "1977", and found so many many people with fusion surgeries done in their teens and now in their 40s, I'm so very glad that I finally post on this site!!

So many things that they talked about have been feelings, both emotional and physical, I've been having for soooooo long, I sure wish I had come back onto this site a lot sooner!! It's amazing to learn that there are so many with our conditions out there! I feel like I have found so many new friends who truly understand! ^-^

I have asked my primary physician to see if I could get a MRI done before seeing the scoliosis specialist.

Thank you for wishing me luck with the appointment!
Alice

rainbow2010
10-05-2007, 05:41 AM
I had an MRI done, but they couldn't do it where my rod was. The steel rods cause distortion. If that area needs to be checked, I have to have a CT scan. You might be better off getting a CT scan before trying an MRI.

AliceL
10-05-2007, 09:05 AM
Hi Rainbow, nice to hear from you again!

I actually did not have a rod put in, only fusion was done. That was what the doctor told me when I had my x-rays back in 1995 and 1997 at Kaiser. I did read in the forum that having a rod will distort the images.

I was talking to a co-worker yesterday who's had many many spinal problems in the past few years that have been giving him great pain. In fact, he might be going into surgery very soon. He doesn't have scoliosis, but the information he told me, about disc, stenosis, etc., was helpful in my continued understanding of my condition. He mentioned two doctors he's seeing that are actually listed in the scoliosis specialist listing that Linda sent to me!

Though from reading the postings, I know at this point mine has not progressed to the point where I would need further surgery, but it's always good to have more info.

One question I've been wondering though... and I haven't seen it mentioned, yet. Have there been cases you (others?) know of that, with further degeneration of the spine as we age.. caused paralysis? Bad as it was, that was the first question that popped into my head, when I started having my pain/discomfort last week...

Thanks, Alice