Tired of living on my island of denial......time to face my fears!

I was diagnosed at age 13 with a right temporal, parietal, occipital avm…inoperable. After trial and error, found the right medication that almost completely eliminated seizures and “episodes”. I am 35 now, and for my entire life have lived with my secret avm. Very few ppl know about my condition. Only my closest friends and family. I am not a fan of the pity party, and even from a young age I didn’t want to admit I was different…To me, at that age, all I knew was that I couldn’t play football anymore. I lived my life virtually sympton free…until recently. It was a business trip to Baltimore when I noticed a hitch in my gait and left side weakness. I called my neurosurgeon in Dallas, and was advised by the on call neurosurgeon to go to Hopkins to get checked. MRI, CT and 3 days of poking and prodding…NO BLEED! My attending advised me to take all my current studies to my neurosurgeon in Dallas when I returned home to look at the possiblity of putting in a shunt to relieve intracranial pressure. Saw my neurosurgeon on Tuesday this week…Amazing Doctor! Oozes inteligence and confidence! So there I was, a grown man at a doctors appt with my mother and father! Not knowing what to expect…I was both relieved and scared sh***tless about the journey ahead…The plan is this embolization, followed by Gamma or possibly surgery.Time to step off my island and back into reality…23 yrs later! I am grateful for getting to share my experience as I think this particular crowd could understand best. We are in the “information gathering” stages still but I am scheduled to see a stereotactic specialist Sept. 10. Thanks for letting me share, let the Journey begin! -GK

i am so proud of you, GK. the journey does begin here and those of us who care will be with you, my friend. you are a brave and proud man and i know that you are gonna face this head-on. it’s a relief to know that you have taken your first steps to finding the truth, and to begin facing this challenge ahead of you. you are amazing. and we will love you through it :slight_smile: -AFJ

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Greg, welcome to the group. Congratulations on taking that first step. It’s a very scary thing to face but you seem to have a lot of support from family and friends. That’s very helpful. It’s great that you found a doctor that you can trust to know what the heck he’s doing. Good luck with your course of treatment. Be sure to ask any questions you may have here. Lots of experienced people who’ve all been there. Be well!

Hi Greg,

Thanks for sharing your story and joining our group. May all go well.

Take care,

Debbie

That’s a great story, Greg. What a journey this AVM condition leads us on. Sounds like your AVM gave you a little nudge. I am so glad you are looking into treatment and also I am glad you have your parents to support you too. I appreciate reading your point of view of dealing with this. Good luck with your treatment options.

Greg, Our thoughts and prayers are with you! Its great that your family is supporting you. Dont be afraid to tell them whatever is on your mind and heart. It will help you to share your feelings. Goodluck and prayers!

1st embolization in a couple weeks!!! The Dr.s are thinking 2 or 3 embos before surgery or Gamma. I hope surgery is an option b/c from what I’ve read Gamma is most effective on smaller AVMs. Keep you updated -GK

Greg, I had 4 embolizations in 97 & 98. Even when they don’t work they are good to have because when you finally have surgery there won’t be as much bleeding as if you hadn’t had them. They had 5 pints of blood waiting during my surgery but because of the embolizations I only needed 1. The worst part of having one is having to be still for several hours afterwards but they were changing that procedure when I had my next to last one.
Good luck to you.

WOW Greg your story is so simlar to mine. I was diagnosed when I was eleven and after many many years I had to make the decision for treatment even though for all those years it was considered inoperable. I had four embo’s and two gamma knife’s so far. I have improved with the side effects but it is not obliterated yet. It has been three years since my last gamma knife. It is looking like more procedures but I am happy I did what I did.
Good luck and all my best to you.

Home for the Holidays!:slight_smile: Well after we all thought the 1st embo was so successful, little headache, but not unbearable…the next night I could NOT lay my head comfortably any where on my pillows! After playing musical beds and couches for several hours, I stood up and found myself projectile vomiting! Mom called my neuro/rad and he had me readmitted that night to ICU no doubt. Appears the embo caused acute hydrocephalus! 2 ventriculostomy’s later(infection of CSF after 1st) I recieved my permanant shunt and made home for Turkey:). Set to continue embos next week, just took a minor 3 week ICU tour of duty!:slight_smile: -GK

Update: Four embolizations and one shunt later…All is well:) Waiting to start 8-10 Cyberknife treatments over the next year. Left side has improved dramatically since embo’s. Still weaker on the left but 9 months from the gym will do that! Anyone have experiences with Cyberknife to share?? I am thinking my AVM is too large for higher dose Gamma, so Cyberknife it is! Thanks for the support, good luck to everyone:)

Update: Met with the Radiation/Oncologist the week to discuss Cyberknife treatments, and the doctor determined that b/c my previous surgeries have been so successful in alleviating my symptons(left side weakness, etc.) Cyberknife is just too risky!..He fears that the radiation dose could make me worse and present new problems. So I’m going to be thankful for the last 6 months of treatment and keep on living! I am confident that my avm has settled down for now, and hope I can remain symptom free:) Thank you all for your positive and thoughts and prayers! I wish everyone the best!:slight_smile: -GK

Wow Greg! I totally see your island metaphor. I am on the island there with you buddy! I agree with the pity party too. I find this website LIBERATING! I am a medical student and I haven’t told many fellow students or doctors. It’s nice to just leave it alone for a while eh? As for your paralysis, that’s what I get too… It usually signals that a mean headache is on the way, but when I was a kid, the paralysis lasted days. Now I’m finally seeing well after my angio and the headaches have subsided. I will know on the 14th what the plan is. I hope it is operable, but a craniotomy isn’t fun either. I’m blown away by how few neurological symptoms you have despite the size of your AVM. Mine’s about 5 cm by 4 cm, but the sucker sure can cause symptoms from time to time. From reading your updates below, it sounds as though they are approaching things aggressively eh? Anyway, I hope they can do something good for you.

Take care,
Vera

Greg , what a story !!!
My avm was not diagnosed until I was 49, I presented with a stroke, then the docs found it.
I was given a second stroke when I got embo, then I got Gk, still waiting for a small part to close off.
I was not diagnosed until I was 49, I’m 51 now, but I’ve had symptoms since I was seventy, all kinds of things happened, some I went to the docs for and some I didn’t. The issues went away so quick I did not give the issues much thought, until the docs said I had an avm. Once I found out what it was, I knew I had symptoms for a long time. I never forgot any of the things that happened to me, although they seemed small at the time.

Peace,
Ameenah

You are a brave man to leave the island. I liked it when I was on mine, but reality has a way of kicking you off whether you want to head to the mainland or not. Glad you have friends and family you, hang on for the ride; it’s worth it!

This is amazing. You give me hope.