I got the results from my CT Angiogram this morning. There was absolutely no change in the size of my AVM, which means that the proton beam radiation was just a total waste of time, money, and hope. Now DR. Singh wants to send me to a neurosurgeon consultation. I think that would just be another waste of money because I consulted with a very good one last year and he said that it was too dangerous to operate unless I have a bleed and it becomes absolutely necessary.
Oh Connie. I just don’t even know how you are handling this news. That is so upsetting and disappointing. Could they explain to you how it could do NOTHING!?!?! My heart just breaks for you. Never give up hope. As my daughter told me, there is always hope for the future. My thoughts are with you .
Connie,im soooooooooo sorry…cant belive this news,and please listen to your daughter,There is always hope,and prayer,please dont give up ok,look for another doctor and a different treatment,maybe gamm radiation??im thinking positive and belive that the answer is out there,xxoo sending hugssssssss
Hey connie- I just got the same news myself last week. I feel like I should ask for a refund for the first attempt. Whatcha think? I don’t know of an alternative. Surgery is out, or its spinning the wheel to see how long life can be with no treatment.
I’ve got an appointment monday with the neurologist, radiation-oncologist and the neurosurgeon, all in the same room. Should be interesting.
This sucks.
oh Connie, I know how you feel (in my own way that is) and understand your frutration and wish there was somehing I could say to help you feel better. I think the hardest part for me is hearing time and again that unless I have a bleed they will not treat me, the frustration is high and the understanding is low and learning to live with the knowledge is difficult never mind living with the headaches and the daily pain, but I trully believe that like Joy’s daughter says there is always hope for the future adn we really aren’t given more than we can bare no matter how heavy that load may seem at times, as long as you hav ehope for tomorrrow you have something to hold on to adn when it feels dim, look here and find your friends, although I may be relativly silent these days I am still here when you and if you need
take care xoxoxo
Lianne
hi connie well i have also been there. i had gamma knife in 2007 and will need another round next year. There has been no change in my avm size in over a 1 1/2. So i really know as well how you feel. It all just sucks waiting around wondering everyday if its going to work out the way we want it to.
Connie, i am so very sorry that the news was not better. i know it easy to give up especialy when you are delt a card like this, but please please dont lose hope. i wish you the best in whatever you deside to do.
Take care
Brian - your appointment sounds perfect! I would love to have a sit down with all the specialists at one time! Good luck!
By the way, you are right…a refund would be nice! lol
Caroline and Joy - Don’t worry, I’m not giving up hope!
connie,
never give up…there will be someone out there with the right treatment for you i am so sorry the radiation didnt work…i am asking that archangel michael…the angel of courage…be by your side to give you the strength and courage you need to continue this journey…you are in my prayers…keep searching…it will happen …lots of love and hugs to ya xxx
So sorry… It must be hard to go through all that and not have it help. I’m with Alicia though–someone out there will find the right treatment for you and it will work. You’ll be in my prayers tonight.
I’m sorry. I wish you had better news. I’ll add my hugs and hopes for a future solution for you.
Hi Connie,
My heart breaks for you. Hope there is an answer for you and everyone in the same boat in the near future.
Debbie
Sorry to hear that Connie…stay positive it will all work out! See this as just being sent to the right doctor that will help 100%. My thoughts are with you.
Connie and Brain, I am sorry to hear about this situation. They also wanted me to go for a second radiation treatment. I choose not too have a second treatment. The treatments come with risks also, like the angiogram, dyes, med’s after. I am still here; going stong since apr 1996. I have a stong believe in God, and natures ability to heal this body. I am suporting my bodies ablity to heal, with a simple diet, and trying to avoiding food allergies and chemicals. Except like a fool I still smoke. Personally it helps me to feel some sence of control, ability to help my self. I meditate, work on personal emotional growth. There is always things we can do, there are many things we do not yet understand about this human body and its ability to heal. So hang in there my friends and have faith, just a little can go a long way. I think this way; if I can limit the work my body has to do, it will have more time and energy to work on the AVM. Hugs from Karen
Thank you, my dear friends, for all your words of encouragement.
Love. Connie
Connie:
How long has it been since your treatment? Sometimes there is a long waiting period with treatments (such as Gamma Knife) I don’t know aq whole lot about your treatment, but please
be patient, you might just need to wait longer. I had Gamma Knife in 1999, 2003, and 2006 and am still waiting for obliteration day, hopefully some day it will happen for all of us in this AVM boat!
Cecelia - It has been 3-1/2 years since I had the proton beam. I love how positive you are! If you read my new blog, you will see i’m feeling more hopeful too!
My avm was also not obliterated by one st radio surgery. I however did opt for second radio surgery. It was not without its own complications. Add I developed radio necrosis which led to many negative symptoms. But the avm is obliterated now! Rock and hard place truly.