Losing hope

Hello all,
I am having a really rough day as I was turned down by the Mayo Clinic for an evaluation as they dont believe surgery is a viable treatment (its in the brainstem)… I really dont know where to turn to next. I am beginning to think that I will not be rid of this malformation or the pain it is causing. I apologize for the negativity…I am just lost right now.

Patti

Patti,

Don’t appologize, we all know where you’re coming from, we’ve all been there and some of us are still there. My AVM is at the base of my brain entangled in the spinal cord tissue down to C2. I’ve been turned down for treatment a number of times, just a couple of months ago. I thought I might be a candidate for CyberKnife treatment but I’m not.

You need to vent or simply to just get if off your chest or just to get it out in words and that is one of the things this site is for. That’s what a support group does. I would like to hear more from you if you feel up to it.

Keep your chin up and your AVM silent,
Kim

I echo don’t lose hope! When Chari’s AVM first showed up, the DRs said not treatable. 10-15 yrs later, the Drs said they could fix it and they did.

Technology is getting better all the time. Hang in there.
ron, ks

Hi Patti. I know you are discouraged but as long as you are alive there is HOPE! I am sending a friend request right now.

Hey Patti,

I have an avm in the brainstem - surgery was never an option i was turned down 9 times before i got 1 yes, for stereotactic radiation therapy - so progress not much change, although something was done, dont let one turn down get the better of you, when you feel like giving up you just have to keep trying till you get the answer you want.! xx

Patti, there is always hope for the future. Gather your records on CD’s and send them to different hospitals.

The other thing I wonder is if you could have your trigeminal neuralgia treated with Gamma Knife? I know when my son was having his Gamma for his Brain AVM, the other gentleman there was having Gamma for trigeminal neuralgia. By the way, I am a dental professional so have read up on trigeminal neuralgia and know that the pain that it causes is just so hard to deal with because it is so severe. I hope you have a good doctor who is helping you, not only with your AVM, but also with this condition. That must be so so difficult for you. Have you tryed different medications for the pain? My thoughts are with you.

Hang in there , Patti & don’t lose hope!
I’d encourage you to get another opinion(s) from other experts, as many as it takes for you to feel ‘right’ about their recommendations and what’s best for you. Ask other members in your region who they recommend and go from there.
I live on the West Coast & ‘sing’ praises for the team @ Stanford! :slight_smile: http://neurosurgery.stanford.edu/patient_care/cerebrovascular.html
Take care & don’t give up,
Patti G.

Hi Joy-
Thank you for your sympathy. My dr said that gamma knife is usually effective for people with trigeminal neuralgia, but since there are blood vessels involved he did not think it would be safe (the malformation is causing the TN- it is at the root entry zone of the TN nerve into the brainstem). :frowning:
I will keep searching.

Thanks :slight_smile:
Patti




Joy said:

Patti, there is always hope for the future. Gather your records on CD’s and send them to different hospitals.

The other thing I wonder is if you could have your trigeminal neuralgia treated with Gamma Knife? I know when my son was having his Gamma for his Brain AVM, the other gentleman there was having Gamma for trigeminal neuralgia. By the way, I am a dental professional so have read up on trigeminal neuralgia and know that the pain that it causes is just so hard to deal with because it is so severe. I hope you have a good doctor who is helping you, not only with your AVM, but also with this condition. That must be so so difficult for you. Have you tryed different medications for the pain? My thoughts are with you.

Thank you everyone for your kind thoughts and hope. I will continue my search and hopefully find peace (and pain free days as well).

Thanks,
Patti

Thinking of you. Keep faith and stay strong…I know easier said than done but life surprises us sometimes.

Patti,

FIrst of all, definitely don’t lose hope. During these times, it helps to take things a day at a time. Don’t figure out tomorrow or next week. Take today, enjoy it, savor it and live your normal life. When tomorrow comes, you can handle whatever it throws at you as well.

Second, I can tell you that I had four neurosurgeons waver back and forth about whether my daughter has a residual AVM in her brain. They would tell me yes, then they would change their tune. Mayo surgeons did my daughter’s second craniotomy. They reviewed my daughter’s most recent scans, but I didn’t feel they were seriously looking at the scans. We sent the scans to Stanford, where they decided it is a residual AVM. My daughter is scheduled for her third craniotomy at Stanford later this month. Several people here will tell you they are the best.

Third, if everybody is in agreement, then I would go back to the neurologist and ask what can be done about the pain for now. Then, as Ron said, hopefully technology will catch up to your stubborn AVM.

Waiting is sooooooooo hard. Believe me, I’m waiting for my daughter’s third surgery. I live in the Midwest. There’s not a neurosurgeon here who will lay a hand on my daughter – too complex, too young. Every morning I wake up with butterflies as I try to figure out all the details for our upcoming trip to Stanford. Waiting is the toughest part.

Best wishes. Feel free to vent to all of us. We do understand.

Take care,
Tina

dont give up.i sas told that igot avm 3 years ago