After waiting for over a month I finally heard from doctor Solomon in NY yesterday. He was my fifth and final decision. He also said my avm is not treatable. Not the news I wanted or needed. I don’t think I can handle this thing anymore but I have no choice but to live as long as it will let me live. I continue to have seizures and headaches. So far none of the seizure meds work for me. Either they make them worse or I’m am allergic to them in some way. This sucks. I have never been one to give up but I have no other choice now. I am no longer in control of my life. The evil thing in my brain controls my life now.
Hi Chrissy,
Sorry to hear of the news about your AVM. It's easy for me to say, and most likely impossible for you to do, but I would encourage you not to lose hope. When my wife's AVM showed up around 1991, she was told it was inoperable, learn to live with it as you had, yada, yada.
Just five years later, we checked with some other specialists, and they said yeah, we can fix it. By 1998, her AVM was GONE through various treatments. While yours might not be as good a story, I offer ours so that you can see their might be hope.
In the interim, I would encourage you to do what we did: Counseling. We knew a great family counselor and both individually and as a family, we spent many sessions talking about what we were facing. My guess it is very similar to what you are currently facing.
Our counselor helped each of us (including our two young kids) work through our feelings and not really get rid of them, but put them in a perspective that we could handle.
None of us knows how much time any of has, so I would encourage you to try to make the best of a bad situation.
Best wishes,
Ron, KS
Chrissy,
Ron’s right… don’t give up. I know you don’t have money to burn (who does?) but despite all the good wishes, doctors really don’t know but are learning more and more every day. I am not a doctor, but my experience on this site is that things change. I do not know Dr. Solomon and I certainly do not want to contradict him, but hey NOTHING is final. (Ok, that was just me, but hopefully it’ll rub off on you). Feel free to use this site to find another doc or even just vent. Whatever it takes. Hang in there, you are not alone in this ;J
I echo Suzy and Ron, KS - don't give up!
While presently, ??maybe?? your AVM isn't treatable, there are new discoveries & technologies being made that may offer you future options. :)
NIH has ongoing clinical trials you may wish to research & follow @ http://clinicaltrials.gov/search/term=Arteriovenous%20Malformation.
Also, you may wish to join the sub-group @ http://www.avmsurvivors.org/group/inoperableavms.
Hold onto the good in your life & know you're not alone.
Best wishes.
Chrissy,
This makes me very sad. So sorry to hear. I have little to offer besides condolences. The only other thing I can suggest to you is a paradigm shift. With a certain certitude now, consider yourself truly free. Run up a credit card bill, go sky diving, and what the hell... commit a crime! It looks like there's nothing to lose, and you're truly free. Start a band, write a book, it's all in your hands.
Easy for me to say, I know. My AVM was operable and I got away Scott Free. I wish for you to live it to the max from here on out. Be well.
-Chad
Hah Chad,
There's an OLD Burt Renolds/Dom Deloies (sp)/sally field movie where Burt thinks he's going to die. Dom is trying to help him die. To me a very funny movie, but in the end, Burt realizes the medical tests are wrong, and he finds out he's going to live--so he makes a deal with God.
You young folks probably never heard of it, but to an old guy like me, it is funny.
Ron, KS
don't let the evil thing in your head control your life, otherwise its winning, well that's how i see it. to lighten the mood i called my AVM Tom Riddle, hes Voldemort from harry potter.
and also we have to think everything advances all the time, medication treatments everything, so just live your life to the fullest just because you that evil thing it doesn't necessarily mean you have to let it make you miserable
I appreciate all of your kind words. I’m sure I will get thru this, but I’m sure it will take some time. I thought I’d come to terms with it but I guess that was just a good day. I have many different emotions going on right now. I feel completely alone probably because I am pretty much alone. This site is my only venting grounds. So I apologize now LOL. Hope everyone has a great day.