Jan 15, 2009
Other Authors
I just wanted to state that if anyone else is interested in becoming an author on this blog, comment to this post with your email and you are in. I'm no control freak but as long as the posts are respectful it's an open forum. What do you have to say about cylindromatosis? Are your parents affected? What's going on with the topical aspirin story?
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My father is affected as well. However, he doesn't have near the amount of cylindromas and spiroadenomas I have. He has had about 5 removed whereas I have had over 30 removed during the last few years. I now have too many to count on the scalp and forehead. My forehead is solidly covered so is my scalp. Have any other patients had problem with pain in some of the growths? What is your opinion about surgical removal as far as is it better to remove as many as possible or just remove the painful or larger ones? I know it is not very common but is there a chance that any of these could be malignant if so how do I know which ones are a priority for removal since I have so many?
ReplyDeleteI had read on some website, etc. about the possibility of some type of topical aspirin medicine that might help as well as the use of CO2 laser. What are your thoughts about that? Are cylindromas prone to getting in other organ systems other than the skin? THe reason I ask is because when I was having frequent bouts of bronchitis and pneumonia my pulmonologist wanted to CT scan my lungs because he said it was possible that he cylindromas could get in them. Does that happen very often? I hate this disease. It is so scarring and having the surgeries are painful. I have been lucky in finding a wonderful head and neck surgeon at Kirklin Clinic. It just feels like I have 5 or so removed and 20 more pop up just like that. It amazes me how fast they tend to pop up. Thank you for starting this blog. I am hoping that others who have this will find it like I did.
ReplyDeleteSorry to hear you have so many of the tumors. I have met other patients who state their growths are painful. I want to look into this more at some point because classically cylindromas are not painful. I don't have an opinion on removing as many as possible, but certainly large ones. It is difficult to know if one is malignant, but quick growth or bleeding would be two concerning signs. You should know that malignant cylindromas are usually treated relatively easily. The topical aspirin is a potential for the future but right now the delivery of the drug is not good. Regarding your pulmonary issues, there is no data that cylindromas also appear in the lungs but it is certainly a possibility. The problem is we don't have enough knowledge about BSS to make a confident statement. Glad to hear you have a good surgeon and enjoy the blog!
ReplyDeleteAre you still researching BSS? I have been diagnosed with BSS & want to learn more about it & how to get rid of all these growths. I've been to many doctors who have done absolutely nothing for me except waste my time & money. I just cut quite a few off of my face. We'll see how that goes. This is so disgusting & depressing.
ReplyDeleteForgot to say that some of the growths on my face & neck were painful. Over the years, I've had at least 2 basal cell carcinomas removed & one was recently.
ReplyDeleteIs this blog still active? I don't see any new comments since 2011.
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