Disappointed

I just got the news a few minutes ago that the new AVM Center that I was hoping would take on my case isn’t going to. They feel that there is still a chance that the PB radiation that I had two years ago might do something and that surgery is still too much of a risk, even though my AVM has at least three aneurysms in it. I had felt so positive when I left Dr. Meyers’ office last month…I guess his team doesn’t feel there is much they can do unless I have a bleed.

Dr. Myers did make some recommendations to my doctor.

  1. Repeat the MRA.
    2… Repeat te EEG.
  2. Make appointmewnt with neuro-opthamolagist to addres my bouts of blurry vision and pain above the eyes to see if they are related to the AVM.

Thank you, Liam. Actually, they (the AVM Center at Columbia-Presbyterian) aren’t offering to do anything…these are just suggestions they gave my current neuro. But my current neurologist, Dr. Tolunsky, is arranging to have these thing done.

Thank you for the hugs…right back at you!

Connie, I am also sorry about your disappointment. Hopefully their decision is based on sound, well reasoned judgment in the best interest of your health. I know waiting feels worse than anything, but you have to think that a recommendation like that can not be related to greed and the desire to do unnecessary or dangerous procedures. That should be heartening, at least to a small degree. Be wary of the doctor who is eager to sell you every procedure they offer. Take comfort in the doctor who values your health over his wealth. I really hope you get some relief soon. Sincerely, Marilyn

Thank you, Marilyn. Yes, I agree with you…Dr. Myers could’ve put me through a battery of tests just to make money, so I do appreciate his honesty. I guess I was just hoping the other doctor was wrong and I could be “fixed”! lol

Hi Connie
I’m sorry to read about your disappointment!
One the biggest issues with AVMs in my view is the fact that there is so much waiting and uncertainty.
I hope your doctors will at least able to treat your symptoms for now. Take care. Soili x

Thank you, Soili. I agree…this wait & see business is the pits! lol

HI CONNIE, IM SO SORRY TO HEAR THE DISSAPPOINTMENT IN YOU. YOU MUST BE SO FRUSTRATED ALSO . KEEP ON GOING …THERE IS ALWAYS A REASON AND A ANSWER. DON’T GIVE UP , KEEP SEARCHING! TAKE CARE OF YOU. TRY TO ENJOY LIFE…AND KNOW THAT OTHERS OUT HERE CARE ABOUT YOU! YOU ARE NOT ALONE! WAITING IS THE PITS! SO JUST DO WHAT EVER IT IS THAT MAKES YOU HAPPY. GO WILD GIRL…ALL WILL BE AS IT SHOULD BE. SENDING YOU ANGEL LIGHT AND LOVE…D

Hi Connie, I am sorry, I can understand how you feel. Sometimes the only thing to do is to trust doctors, if they believe PB radiation can make a change so it will. I hope doctors can find a way to treat all kinds of AVM very soon. Take care.

Connie: all things considered, I’m fine, but who is John?

Anyway, I’m disheartened at your current situation. And I do tend to agree with Marilyn. The good thing is you don’t have someone eager to cut your head open, knowing full well what the ramifications might be. And besides you already know what I’m going to say: the fact that there is this “pregnant pause” for you is God’s way of allowing you to develop more patience & peseverance. Remember those 2 fruits of the Spirit? God is still in the process of molding your character for His purpose. I know it seems cruel, but the fact is we are being prepared for further challenges that we will face down the road. You are an inspiration. Your joy for life extends beyond the customary boundaries. Don’t lose heart, I lift you in prayer that He give His mighty angels charge over you. Stay strong and have faith I’m Him who has the power to heal. God bless you, Nora~

Sorry, Nora…and my apologies to Charlie…lol I was hit with an “AVM moment”…I meant CHARLIE, but typed JOHN. I’ve been having a bunch of these lately. I know what I mean; if only everybody else did! lol

I’m so sorry about your disappointment, Connie, and I can relate- doctors have told me there is nothing they can do for my daughter, Hannah’s, AVM. It is really disheartening. What’s worse, I know she continually lives with pain, (probably as you do?) though she never complains of it. She’s lived with this her whole life and doesn’t know anything else. I hate that part- just wishing I could take her pain away and, of course, the threat of another bleed. Doctors told us that radiation is not an option for Hannah due to her young age and the risks it presents. You have had radiation in the past? I don’t know specifically what PB radiation is. Hannah has never had radiation treatment, only an embollization when she was two. But the Avm reformed as a large diffusion that they can’t seem to do anything about now. She isn’t on any medication whatsoever. I give her only Tylenol if necessary; I’m scared of the side effects of many OTC medications and doctors don’t seem to tell you anything. Anyway, my hugs and prayers go out to you!!
Dulcey

Thank you, Dulcey. I am on a lot of medication; Zonizamaide twice daily to prevent seizures, Avinza 60 mg twice daily to prevent pain; hydromorphine as neede for “breakout pain” that still seems to get the best of me, lexapro to stop my crying jags, and Miralax beause everything else causes severe constipation!

So when my friends say that I’m “not right upstairs” or full of sh*t", they’re right! lol

Connie

…at least you have a viable reason–what’s everyone else’s excuse? lol