Scoliosis - has anyone had the misfortune - post EC surgery?

[lightsinthecity]

Hi Everyone. I have been meaning to write on the above subject.

Although this has been happening over the last couple years I think I may have been in denial. My left knee gave out to what I was diagnosed as Osteoarthritis and, as we all do, I was favoring the opposite side that an injury has occurred. So, I started "leaning" to my right. It became my "lean" to the very few family members I have left.

I really should have gotten the message when my right rib started sticking out!!!

I don't socialize at all and in this case - that is kind of unfortunate because they say that people recognize the difference in things - uneven shoulders, walking differently, leaning, etc. My husband has of course noticed but he sees me on a daily basis so that makes it a bit different.

Well, I have "scoliosis" which seemed to have progressed very quickly in the last year - two of my doctors stated this. One, a neurosurgeon, wants to do surgery, putting in Rods and bolts and God only knows what other things he said - after the word Surgery and Rods my mind turned blank.

When I asked how this could happen, after I am asked the usual question - have I had Scoliosis my whole life - I have been told that there are a small amount of adults who do get Scoliosis n adulthood but, in many cases (such as mine) they feel that it could be from the radiation, possibly the chemo and even possibly the surgery.

I started physical therapy AGAIN and had my initial appt. the other day wherein we just talk, etc. This isn't my first time around the physical therapy ring.

It is a very hard pill to swallow after everything that has been going on and ya'll know what I mean by that.

Sometimes I just wish that I could have something wrong with me one thing at a time - instead of everything all at once.

I now have a brace, big and bulky but at least not like those old "turtle shells" as the nurse who gave me the velcro one called them. The way he described it was like a person getting fitted for a cast on their leg from a broken leg - boy, that would be hot in the summer time - even if you DIDN'T go anywhere. This one also gets warm in the heat - but, in comparison - I doubt as hot as the shell.

Well, any input anyone would have on any familiarity would be great.

I wouldn't wish this on anyone - especially on top of what we already have to deal with.

Take care everyone!

Have a good weekend!

[Hidden]

As I understand it, the doctors do not know the precise cause of scoliosis in the majority of cases, and I do sympathise with you having this condition on top of all the other things you have had to deal with. It is unfortunately true that those who undergo this surgery are just as likely to have other conditions that arise before, during or after the treatment, and this is sometimes related to getting that much older, like everyone else.

I hope that the treatment goes as well as it possibly can for you.

[lightsinthecity in reply to Hidden]

Alan: Thank you for your reply - looking at my post - I sure did go on and on as I usually do. I really don't think age is a factor here because scoliosis isn't a disease that is age related (as far as getting older). I may or may not have mentioned that this disease is more likely to happen to teenage girls.

[Hidden in reply to lightsinthecity]

I apologise. I was really only thinking that when people are older they can tend to have more than one thing wrong, but it is true that this can happen at any age of course. I accept your point about scoliosis.

[lightsinthecity in reply to Hidden]

Oh Alan, don't be silly - there is no need to apologize. Matter of fact, you are more than right about people tending to have several things wrong as they age. I developed EC younger than the average - I believe - and I think it just elevated me physically about 10 years. My oncologist actually confirmed this. I guess because of the radiation, chemo and surgery - it puts all kinds of pressure on all kinds of things that wouldn't have been happening to your body until an older age had you not gotten Cancer - or something like that.

It is indeed unfortunate, I have a lot of things going on medically and now getting back into physical therapy for the ### time - my therapist said "boy, you really got dealt a bad hand" I second that....

I hope your weekend is going along nicely... our weather has cooled off and it is very pleasant out.

[revdj]

Both of my daughters have scoliosis; one diagnosed around age 12, the other at about 9. The older daughter wore a fibre-glass, heat-trapping, body-brace for 3 years. Scoliosis can be hereditary, as an uncle, who I never met, who died long before I was born, had 'untreated' scoliosis. I am glad for this discussion you started, as it would never have occurred to me that scoliosis could show up as we get older. I am sorry that you are suffering.

[lightsinthecity in reply to revdj]

Thank you very much for your input revdj. I hope your daughters are doing well. Did the daughter who was braced for three years benefit from the brace?

It never occurred to ME that I could get scoliosis, I don't know of any relatives that have had it.

I regrettably made my post way too long but I did want to get across the point that doctors mentioned that they thought it had occurred (at least in part) from the treatment of radiology, chemo and/or surgery.

I thought if that was the case than more people on this board may have the misfortune of contracting it after we got this awful disease of esophageal cancer (I am in the states so we say esophageal instead of oesophageal :)).

I hope YOU are doing well.

[revdj in reply to lightsinthecity]

My older daughter's spine was straightened; her brace trapped heat, and she passed out in church, one Sunday, just as she was leaving the Sanctuary [Pastor was preaching at the time, of course!]. |She wasn't feeling well. Next thing we heard was an awful crashing sound, as she and her brace hit the tile floor! She was 13 at the time, and this was rather embarrassing to her, to say the least. As for myself, things are not going that well at the moment, and some hard decisions will likely have to be made. All treatments/procedures so far, for my type 1 Achalasia, have been unsuccessful. I live in Canada.

[lightsinthecity in reply to revdj]

Glad to hear that your daughter's spine was straightened. I guess that hot brace paid off... they don't make them like that anymore - or that I know of. What about your younger daughter - did her spine get straightened?

I am sorry to hear that things aren't going well for you at this time. I had never heard of Achalasia... or maybe I have come across the name but did not know what it was so I just looked it up.

Can you eat? It makes it sound as though one can not eat or digest the food - one or both of those. They also said that there is a Laparoscopic myotom surgery which they made it sound successful. Is this one of the hard decisions that you will have to make? I am sorry to hear that.

I have never been to Canada but have always wanted to go - I hear it is beautiful. I doubt that will ever become a reality at this point. Is the place you live in scenic and as beautiful as they describe?

[revdj in reply to lightsinthecity]

Both daughters were competitive swimmers - this was part of their physiotherapy. Younger daughter did not wear a brace. Her spine was straightened. With the type of Achalasia [1] I have, my esophagus is paralyzed. I have had the Heller Myotomy surgery & fundoplication, as well as 2 balloon dilations to try to stretch the esophageal sphincter muscle at the entrance to the stomach. This muscle is too tight, and continues to be that way, which means poor clearance of anything, into the stomach. I think no matter where one lives, there is beauty. We are in a Province, in the centre of Canada, but I have lived in 7 different Provinces. We are not in the mountains, but on the Prairies.