Glad I found you

[Guest guest]

Hello,

I am a new-ish member. I'd certainly love some advice, though I know I

may be repeating things others have said and should really spend some

time reading previous posts. In any case, if you'll bear with me,

here's my story:

I am 51 and I live in Toronto. I was diagnosed with scoliosis at age

5, and I had Harrington rods put in when I was nearly nine (1966),

despite the fact that only a trained eye could see anything was wrong.

I don't know what my degree of curvature was, but I was told it was

progressing rapidly enough to warrant surgery. My parents accepted

what the doctor told them. I spent three months immobilized in a body

cast and another three months wearing a corset-style brace with

hard-plastic back. Because I was so young at the time of the surgery,

I now have a very short torso. My surgeon was Dr. Hall, who later

moved to Boston.

Beginning in my 20s, I had quite severe sciatic pain in my hip and

right leg, which came and went over the years. Five years ago I was

diagnosed with breast cancer, and after radiation and chemotherapy I

went into menopause and gained about 25 pounds (I weigh about 165 lb.

and I used to be five feet, two and a half inches tall -- probably

should have been about five foot six). I always had a fairly prominent

chest (the way it was thrust into view because of my back always

caused a lot of shame), and now it's pretty big. I currently take

Arimidex to prevent the return of cancer, which is known to cause

muscle and joint pain as a side effect.

Nearly a year ago, quite suddenly my sciatic pain vanished, and I

began to experience a weird discomfort in my upper back – as though it

was stiff and made of wood. Slowly but steadily over the past year, my

thoracic back pain has increased to the point that I am really

concerned. And it's more than back pain, it's really uncomfortable. I

feel keenly aware of my spine, as though I just had it fused

yesterday. The pain moves around – mostly it's in my right shoulder

blade, but sometimes it's in both, sometimes it's at the bump where my

neck starts (over the past two years I have developed a weird

dowager's hump sort of thing, so that I have a rounded bit at the base

of my neck, and the bone density clinic says I've lost an inch and a

half in height in just two years, though I don't have osteoporosis).

Sometimes my chest aches terribly. I alternate between feeling that I

have anvils hanging from each breast, and feeling that I have anvils

hanging from each shoulder blade, sometimes both. It' rather like

having a large man sitting on my shoulders, causing downward pressure.

I'm starting to get indigestion frequently and a feeling like my

espophagus is being constricted, or my sternum is cracked. My muscles

have atrophied quite a bit, I guess, and getting up from a sitting or

lying-down position is excruciating, as is coughing or sneezing. I'm

trying to do exercises, but it hurts a lot, and now walking hurts, too.

In May I went to an orthopedic surgeon in Toronto, Dr. Raj Rampersaud,

whom I'd seen before about the sciatica after my previous specialist

retired. Although he'd told me just over a year before to come back

and see him in a year's time for a checkup, he rudely kicked me out of

his office because I had dared to come to him without a referral from

my GP – apparently, thoracic pain is considered a " new " problem, and I

had only been referred to him for my lower back stenosis. When I

protested that I had onlyone spine and had had only one surgery, he

was even ruder. I assume he was unable to bill the Canadian health

system for such an appointment. I felt humiliated and helpless.

My oncologist has made me an appointment with another spinal surgeon,

Dr. Henry Ahn at St. 's Hospital, but I won't get in to see him

until January 23rd. I'm lucky I'm only waiting six months when the

usual waiting time is a year. Canadians on the list will understand

what a shortage of orthopedic surgeons we have here.

I assume that what's happening is that gravity is having its way and

my overweight middle-aged body is trying to slump and sag into an

older woman's body but my fused spine and rods are having none of it,

leading to some kind of pulling. My physiotherapist suggests my ribs

are being pulled out of alignment. I'm planning to start Weight

Watchers soon, but it will take a long time before I'd see any

results, if that's the problem. I wish frequently that I'd had a

double mastectomy (it was never presented as an option) so that my

nine-year-old's little spine wasn't carrying this load upfront.

The pain is great enough now that I'm seriously considering trying to

get in to see a surgeon in the U.S. What I'd really like is an MRI to

make sure that none of my instrumentation has come loose, and to have

some reassurance that my self-diagnosis is correct. I'm not really

expecting surgery would help, nor am I eager to do that again.

Any advice would be appreciated.

Sincerely,

Trixie.