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Anyone have a paraganglioma?

Neuroendocrine Tumors (NETs) | Last Active: Dec 16, 2024 | Replies (24)

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@wilhelm

Well, I did more research, one article I came across from Columbia in NYC mentioned that a better way to remove the paraganglioma was thru the back, instead of the abdomen, but that there were few people that did this option. After looking for this, I found a Dr. Carling in Tampa, who uses this approach. One of the benefits is the length of the surgery, from the front can take several hours, he is usually done in less than 30 minutes. After sending all my records, and several phone calls, he has agreed to do my surgery, which will be on Dec. 10th. He is only dealing with adrenal surgeries, and has done many paraganglioma removals, now I just want to get the waiting done! Will be back with after surgery thoughts in a few weeks. Oh, the drug I've been put on, Doxazosin, is usually shown as being used to treat high blood pressure, but after finding go dot drugbank dot com, it is also an alpha adrenergic receptor. This site was very interesting, goes into much more detail on drugs than a standard google search.

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Replies to "Well, I did more research, one article I came across from Columbia in NYC mentioned that..."

@wilhelm, you may wish to connect with @dawn_giacabazi who is also a patient of Dr. Carling. See this discussion:
- Pheochromocytoma: Anyone being treated for an adrenal mass? https://connect.mayoclinic.org/discussion/pheochromocytoma/?pg=3