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Bob, Volunteer Mentor (@grandpabob)

Anxiety due to Cancer

Cancer: Managing Symptoms | Last Active: Sep 5, 2020 | Replies (27)

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@julieannarcand

Thank you so much for your reply and for allowing me into the group not knowing if my tumor is cancerous. I have a rare spinal condition called Klippel-Feil syndrome and at 25 had major surgery to insert 2 long screws through C2 up through C1. And 7 more surgeries in the next 7 years. The pain in my neck greatly intensified and I went through a pain clinic where they actually advised pain medication. I am now 52 and slowly the Migraines got worse and worse until I began having extreme facial pain then swelling and trigeminal pain all on the right. The Migraine specialist treated me for migraines and cluster headaches atypical. So basically a constant dose of pain medication that I and they realized was better for me to just take the lower constant dose than to take pain medication when I needed it. So that has been going on for 20 years. I have been injected with botox, lidocaine, take aimovig for migraine and relpax daily now because all of the neurosurgeons believe it is not cluster headaches but headaches due to the location of the tumor. Although I still suffer from migraines and they all think that is separate from the tumor. The tumor was found last November and I went through radiation and am still exhausted, still in pain and losing hair. I am trying to learn acceptance because I joined a Facebook group that was very helpful in some ways of hearing other's struggle with the doctor's varying and opposing opinions but also unnerving because many people having the same tumor have had successful surgery and are out of pain! I'm in the Seattle area where one expects the best of care and I am told it's inoperable- until death makes surgery the only choice meanwhile a woman in small town Iowa had successful surgery. I think I have to come to terms with this tumor not being the linear way my spine surgeries were. Thank you for listening and I am sorry for anyone who suffers from chronic migraines, cluster, tumor or cancer…and any disease ! Hugs back to you and thank you.

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Replies to "Thank you so much for your reply and for allowing me into the group not knowing..."

@julieannarcand Hi, and welcome and please don’t apologize for anything! Are the doctors you’re seeing at a major medical center in Seattle? Maybe get a second opinion. Are you scheduled for regular follow ups on your condition? What have the doctors told you to watch for?