17 years suffering

Colleen - CassieCody@aol.com

Posted 2007-01-21

I visited your site years ago after keyboarding the word tailbone into my computer and to my utter amazement and mental COMFORT saw you holding up your tailbone!!! I have been in awful pain for 17 years now. Never could imagine anyone could suffer that long without a cure but I am proof it does happen. As you can imagine after 17 years my story is Long!!! Seeing that photo of you has literally helped me from committing suicide somedays because it was then I knew that maybe someday (even if I had to travel overseas) I could one day have this tailbone out if I wanted too. I have been out of my mind with pain these past 3 days which has brought me back to your site, and thanking God and you for it still being here.

My pain started from a disease process I say, but being that nothing ever shows up on x-rays or MRIs. I have also been told it is in my head (Like a lot of other people with chronic coxxidinia - as I sometimes see in your testimonials!!!!) I have Gaucher's Disease which causes an accumulation of large Gaucher cells in the bone marrow which in time crowds out the ability of the marrow to make red cells and platelets. I was near death at the time from a platelet count of 6,000 (which should have been in the 100,000's) and a hemoglobin of 6 which provides us with oxygen to the organs and bones, and is supposed to be at least 12 (11 and under and you are anemic and feel very yucky and you can't breathe without oxygen, and with the extremely low platelet count your blood can't clot, so I almost hemorrhaged to death and was receiving blood and platelet infusions every other day.

Then low and behold a news article appeared about and experimental new drug being used at the National Institutes of Health for Gaucher's Disease. I had my spleen removed at 14 because this disease enlarges it and you had to have a spleen in order to qualify for the experimental use of this new drug. I had to wait 4 months for it to pass thru the FDA (in spite of the fact I was near death) then they started to infuse me with it and within months my counts were all within normal limits because it was getting rid of the Gaucher cells in the bone marrow. I had stamina and energy for the first time in my life and was looking forward to a new life

But unfortunately that waiting period caused what is known in Gaucher land as a bone crisis (literally a heart attack of the bone from lack of oxygen) Just out of the blue I felt the most excruciating pain in my sacrum, ishium and coxxy. After two weeks all the pain stopped except on the tailbone and I have been in pain every day since. The first year the pain NEVER stopped. Only when I took enough pills to fall asleep for a while was I out of pain.

Then it began, the cortisone shots, then cortisone and lidicaine, physical therapy with the TENS unit only made the pain worse from stimulation. I would go to a doctor and he would dig in there and touch that tailbone and I would burst into tears automatically from the pain. They said "I think you have a sore tip" NO KIDDING YOU DON'T HAVE TO TELL ME THAT!!!! I asked if it was a nerve. They said there aren't that many nerves that go down there. The surgeon refused to take it out for fear of infection or lose of bowel control.

Elavil makes you so spaced out- your butt would be tingling but it would not connect to your head so much. That's a terrible drug that also made me fat. They pumped me full of morphine, by mouth, then injecting myself, then via implant in my chest which got infected causing me a 10 day hospital stay, then implanted an epidermal which gave me spinal meningitis.

Toradol injections work for a short time. but when I start being active or sitting the pain starts all over again. Acupuncture never worked and cost me $600 which was just about as painful as my tailbone. Expensive candles she was burning on my butt with those glasses that left big red rings.

My butt is permanently red and frozen. I started out searing heat into it but that didn't work so I switched to ice (17 years ago) Filling up my ice bag twice a day is a drag but I have no choice now. I told them that I felt excess heat was coming from that area but they wouldn't listen. If I don't freeze the area it burns now (I think that's frost bite!!!) I don't think the ice works but it makes me feel like I am doing something and that is comforting. My ice bag, donut and morphine (which doesn't always work) have become my life. I gained from the testimonials that surgery does not always work so I gave up on that idea years ago. Came back to look for new ideas. We know we must not become constipated for that sure will increase the pain. I am going to ask about the diclofenac suppositories and the fish oil I saw on the site.

When I went to my first pain management doctor who hypnotized me without success there was a women talking to her daughter and I over heard her say "I have had this back pain for 15 years and my hair stood up thinking 15 years how could anyone be in pain that long. Well, now I know how!!! I did see a doctors name there I may go see him come spring.

Thankyou for listening.

Colleen

I would appreciate any e-mail.

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