After experiencing horrific pain for two years in my right arm and muscle loss in both, I have now been told that the probable source of the pain is coming from a 1.5 cm hemangioma at C5. I also have two smaller ones higher up. This hemangioma has grown from something minute to this in 8 years. 25 years ago I had a lymphofibroma removed from tis same level (exterior) that was growing. The surgeon at that time told my PCP to watch that I didn't develop a lymphosarcoma. I also have a bone cyst in the posterior humerus that has grown from 1.0 cm to 1.5 cm in less that one year with an area of inflammation around it. The pain and muscle spasm is been horrific and I vomit with it. I have a strong constitution but am coming to end of my wit. The bone scan showed the area to be 'hot'. Now I have to repeat the MRI in another 6 mos. I need to work, but working as a medical assistant has been difficult due to pain and restricted movement of my right arm. Any suggestions? I have had a history of CNS Lyme Disease treated fairly successfully, and flares are restricted to my knees.
Thank you for this great site.
re: your cervical spine hemangiomas....i too have been having such horrible pains for 2 yrs now. i have been to the ER 3 x thinking heart attack..had endoscopy, colonoscopy, barium tests, mri's, cat scans, numerous blood work, even a cardiac catherization done (and sure i am missing alot of stuff) and drs. are stumped. i do have numerous hemangiomas on my cervical spine, but two spine surgeons told me not to worry about it. what kind/type of dr. told you that the pain is due to your hemangiomas? i would like to find this type of dr. by me so i can get my pain away!!!!! its very frustrating and have trouble day to day...sometimes the pain is away but always comes back on its own. i just finished a 3 wk series of trigger point injections in my back and neck that did not help since i was in bed most of yesterday with such severe pain. is your pain in your upper back that is also noticeable in your chest? i have that plus since 11/10 i am having horrible neck pain and headaches. i have started amrix at nighttime...this is only my 2nd night taking it....i am at my wits end and want my life back.
It is very likely that your Lyme disease could be causing your pain again. There is a lot of controversy over the proper treatment of Lyme with mainstream medical believing it can be treated by the CDC standards which are basically the guidelines set up by the Infectious Disease Society of America, and the other side (which is simply a different group of MDs) who believe the treatment guidelines put out by the IDSA are flawed. Some of the physicians that are opposed to the guidelines have been members of the IDSA, and even Willy Burgdorfer, the discoverer of the Lyme bacteria believes in persistent Lyme disease. There is a new documentary out called, "Under Our Skin," that will detail the political controversy in the treatment of Lyme as well as show some of the patients who are still dealing with Lyme after having been, "successfully treated," according to physicians who follow IDSA guidelines. I would also visit ILADS.org as it is my opinion they are much more on top of Lyme disease than the IDSA. The Connecticut Attorney General had an antitrust investigation looking into several conflicts of interest that many members on the IDSA panel had when making these guidelines. A settlement was reached and part of that settlement required the panel be replaced with members who had no conflicts of interest. In July of 2009, testimony was held and can be viewed on the IDSA website until they take it down. We are hoping for a good outcome, but many of the top physicians who are on the side of the Lyme patients (which is not the CDC/IDSA side) were left out of the testifying. So there is still some skepticism as to whether or not Lyme patients will be treated fairly by the IDSA. The CDC says they do not necessarily endorse the opinions of the IDSA. However, on the CDC's website you will find a link to the very IDSA guidelines on the CDC lyme page. They offer no other links with differing opinions on their website. It's pretty obvious they aren't interested in any other opinions.
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