You can see another doctor

6/26/13

Hey guys! First time blogging ever so please forgive my skills.

A little back ground information: I was born with a rare bone disease called Multiple Hereditary Exostosis. Basically, I have bone tumors in all my joints and it causes major soft tissue damage. Most doctors have never treated it. Besides me and my family, there is only one other girl in Memphis, TN that has this disease. My main problem is finding doctors to treat me.

I was in a car wreck in November 2012. A lady slammed into me while I was at a redlight and it separated my left collar bone. It is now June 2013 and it has only gotten worse. I have seen 2 surgeons about it and have had numerous x-rays and MRIs. I tried resting it, therapy, and all that great stuff that never works for me. The normal surgery they would do for this situation, I have already had done back in 2007.

Today's doctors adventures:

I see the cheif of staff (head surgeon) at one of the top orthopedic groups in Memphis, TN. My first question when he walked in the door is "do I have any metal in my shoulder from the last surgery?" His answer, "No, but let me go look on the x-ray." He comes back and says that there is no metal. I told him that the MRI report says that there is metal in there. He has no answer to how that could be. He goes on to explain that I have a grade 3 AC joint separation (thats pretty bad.) There is a surgical fix but they usually only do it on football players. I said that I want it done. He said there is only a 70 percent success rate. My reply, "OK, sounds great!" But, wait for it....wait for it. He will not do the surgery since there is a 30 percent failure rate. I looked at him with tears in my eyes and asked for him to please do the surgery. If it doesnt work then oh well, we at least tried. He said that he will not do the surgery and had referred me on to yet another doctor. I go back next Friday to see that surgeon. I would say hopefully he will have an acceptable answer but at this point I have lost all hope.

Thanks for reading.

-A crippled covered in scars.