Feeling very low tonight. I saw 2 high powered Neursurgeons today in Seattle and was told there is nothing they can do for me. One doctor was empathetic the other coldly dismissive. I know most of the rest of you have had similar experiences…just thought I’d log on and get it off my chest!!!
So sorry to hear this...have you explored PNS?? I have heard it can be helpful-- not sure about for AD but it works for TN and is often used for migraines as well. One group has a facebook page you could check out--
https://www.facebook.com/groups/232392623486874/
Some docs need a swift kick in the face to realize what a lot of their patients endure...
prayers to you for better days ahead...
I would now look to see the BEST PNS doctor you can get --- get a consultation --- don't stop searching ---
Do you have a MM card??
Read up on Nerve Pain and Medical Marijuana!
You can get edibles, smoke, oil, vapors --- it is helping soooo many people
Find how to watch CNN - Sanjay Gupta
2 part series on it
((( ML ))), good to vent and come here and get it out…this place is such a safe place of understanding…
Although my GP, Neurologist & Neurosurgeon haven’t really said it directly, nor have I been or felt dismissed, I’m in a similar situation in that there’s not much more they feel can or should be done. They are supportive, for that I’m grateful.
But, I’m struggling with acceptance…I still have HOPE, I don’t really know why, as most days it’s hard to find, I think because if I lose hope then I feel I’ve given up. I can’t give up! Better days have to be ahead…I can’t fathom the alternative…
Collectively we have to gather our strength and remind one another to not give up, to keep the hope alive, and keep trying whatever we can to reach better days.
Just want you to know I’m thinking of you and hoping the days ahead will present a glimmer of hope…
(( hugs )) Mimi
Thank you friends! After a long night of burning facial pain from my TN & AD, I’ve transitioned from feeling humiliated to just plain mad at dismissive Neurosurgeon #1. He’s head of the whole Neuroscience Institute at a major hospital in Seattle and is certainly aware that he is “a big deal”. I’ve been his patient for 4 years and he has performed surgery on me. Yesterday he walked into the exam room, didn’t even sit down, and coldly informed me that he was passing me off to another TN specialist in another of his departments. That’s not a such a bad thing it’s just the coldness of his attitude and demeanor. Neurosurgeon #2 is head of the Radiosurgery Department and has an incredible resume treating TN, he was very empathetic and knowledgable but told me there is absolutly no surgical intervention of any kind possible for me. He recommended a “cocktail of meds” and promised to write a note to my regular Neurologist with his suggestions for medication changes. He then dismissed me…told me there is no reason for me to return to the Institute of Neuroscience as there is nothing they can do for me. I’m now just a pain patient. All of that is true, and I appreciate truth, but I felt somehow humiliated to be dropped by the best Seattle has to offer. As for a “pain cocktail” I think I’ve been tried on all the available medications over 16 years and had serious reactions to almost all of them. I can’t imagine that a combination of them will be anything but horrible.
I just had an unrelated brain tumor removed by Dr Marc Goldman in Tacoma WA. He's fantastic. Super nice guy and a top surgeon. We talked quite a bit about my TN as well but we didn't do anything in that regard. I highly recommend reaching out to him. He understands TN extremely well and will give you the straight goods.
Todd
Todd Friesen said:
I just had an unrelated brain tumor removed by Dr Marc Goldman in Tacoma WA. He's fantastic. Super nice guy and a top surgeon. We talked quite a bit about my TN as well but we didn't do anything in that regard. I highly recommend reaching out to him. He understands TN extremely well and will give you the straight goods.
Todd
Thanks Todd, I’m glad you’ve found someone who is helpful for you. I live way north of you, out on Camano Island, so Tacoma is out of the question. I actually have a decent Neurologist in Mount Vernon, Patty Brettell.
I’m just really hesitant to become as heavily medicated as I was following the trigeminal nerve tumor surgery. Neurosurgeons at UC San Francisco had me so dropped up I “lost” about 3 years…can’t remember much of anything for that period of time and in photos taken of me my eyes look like “no one home”. Id rather hurt than allow that again.
Thanks KC...Just went on the comp. and printed out both series on the weed from Gupta. I am on the fence with it so more info will help me. Hope u have a great weekend...Eva
Read up on Nerve Pain and Medical Marijuana!
You can get edibles, smoke, oil, vapors --- it is helping soooo many people
Find how to watch CNN - Sanjay Gupta
2 part series on it