Hello, my name is Michael and I’m new to this site. I’m 52 years old and originally from Salt Lake City, Utah, USA, but I now live in Abu Dhabi, UAE.
I was diagnosed in August 2016 with a 3mm un-ruptured AVM near my brain stem by the cerebellum pons point angle. I also have two flow related aneurysms.
For the last 5 years I have had electrical shocks from the top of my head down across my right eye to my cheek. It turns out the AVM is near, or goes around, my 5th nerve and when inflamed it causes nerve impulses that give me a shock sensation.
After this discovery I did a lot of research, praying, physician consults, and decided to fly to Cleveland Clinic in Ohio to have a gamma knife procedure. That was December 15th, 2016. It was 16 Greys of radiation for 85 minutes. They said I need an MRI every 6 months for the next 1-3 years.
About one month out I have low pain level headaches almost all the time and the right side of my head is still numb but that is my only side effect.
i recognize how lucky I am that this was found prior to a rupture. I appreciate everyone’s post and your inspirational stories.
Welcome to the site! I hope you find some support here from people with similar symptoms, treatment or location of AVM. It is really interesting that you’ve had your “electric shocks” explained. I’ve got a dural AVM in my right occipital and back in October, I had a few very minor electric shocks, which I noted in my story. It is interesting to find someone reporting a similar thing.
You’re a lot deeper into your AVM journey than me, with much more discomfort, I think, so bless you and very best wishes.
Welcome Michael, nice intro post, glad to have you, I also am 52, 27 + yrs, post surgery,( cranial, left -temp,) best wishes to you and yours,. Did you go back to Dubai??
Nice to meet you. Yes I did come back to the UAE. Makes me a bit nervous as ambulance systems are different here, should I have a bleed. I was told to just get to the ER even if it’s by taxi. I look forward to other conversations.
Hello Richard it’s nice to meet you. I’ll have to go read your profile now. It is interesting regarding the shocks. Whomever I tell how I came across the AVM they just say, “that’s weird.” Though I’m not glad you have them, I am glad someone knows what I’m talking about. It happens mostly when I’m stressed and lasts for a few months, then I’m ok for several months with no symptoms.
Usually they are just a split second but sometimes 100/day. In general I’m pretty symptom free.
So where are you in your journey? Do you know what direction you want to proceed?
I’m currently waiting for an appointment for a catheter embolisation procedure, which I’m told I should expect in Mar or Apr. I’m still dizzy, caused by some elements of my AVM, which getting a very very tiny bit worse / more weird each week.
The interventional radiologist I saw in Nov believes he should be able to put me right with one or possibly two goes at the embolisation. This sounds good to me.
Thank you for your kind note. Overall I’m doing fine. Every day is business as usual, excepting its 3:45 AM and when awake the AVM is not only literally “in the back of my mind” but figuratively also. I went to Qatar last weekend and thought, “if I had a bleed, I don’t know where a hospital is, which one could handle my case, or even how to call an emergency number.” I guess that is the plight of everyone here. Regardless of our AVM location, it’s always at the back of our minds in all that we do.
Hi Micheal,. I do feel for your situation, I pray you don’t have to deal
with any AVM issue while abroad,. Me, well left DR’s office this
evening with a referral for the mayo or barrows clinic in Phoenix, due to
the lump that has recently formed,.WOW !! Pretty discouraged, never
thought I’d be dealing with this 28 years post surgery, pre- surgery I
was told you were born with AVM that has had a 2% chance a year of
aneurism, that was late 23 yrs, old, “I was not” told that with or
without surg, at 50 yrs, old you do have a 100% chance of aneurism, I’m
53 in march and the last three years just keep getting harder and harder,
the lump is going on four months, it formed on the left side over surgery
site, then slowly moved around the back of my scull and parked exactly
same spot, just opposite side, started about the size of a nickel, now
about quarter but elongated, if i touch it on the right, I physically
feel it on the left, and yes I can feel it right now just txt’ing you,
it’s like fluid or something,. Sorry to carry on, thanks for
listening, Be strong!
Andrew, I hope that you never feel that you are “carrying on.” The value
of this website is we are all able to connect with someone who knows how it
feels. Sometimes we try to have empathy for others, but when we know, for
the most part, exactly what is pressing down on someone, because of our
personal experiences, we can have a more perfect empathy. (My high school
teacher English teacher would probably tell me that’s a run-on-sentence,
but I’m sure you know what I mean.) I know that you’re having a hard
time. I know that you think about it as you commute to work. I assume
since you’re in your 50’s, you occasionally have to go to the bathroom in
the middle of the night and you start thinking about it again and
consequently don’t get as much sleep as you had hoped for. I also know
that bodies are amazing things. I believe in prayer. I believe we’re
entitled to personal revelation as we seek out options and study things
out, we will be led to know what our next step should be.
Both Mayo and Barrow’s have great reputations. One of the many physicians
I consulted was close associates with Dr. Spetzler and he was seeking his
opinion, but due to major cuts in my insurance in 2017, I needed the
procedure to be done in 2016 so I never had time to find out what he had to
say.
What are your thoughts so far as to which facility is right for you? What
are the things you’re weighing?
Hi Michael. Welcome to your new extended family. This group will give you a lot of support and encouragement on your AVM journey. We are the people who “get it”! I had a 4 cm AVM in my Cerebellum that I didn’t know anything about until it ruptured in Nov., 2014. I had Gamma Knife Radiation in 4/15 as that was the only option available to me due to the location of my AVM. On 9/27/16, I had my 18-month MRI & MRA. The next day I received the wonderful news that my AVM did not show up on the film. However tests will be repeated in June, 2017 with contrast dye to make absolutely sure that the beast is gone. I am 66 years old; feeling pretty dam good; and determined to live my life as best I can. Sure, I have a few deficits, but who doesn’t? My advice to you is to Pray, be Patient, and let your fellow AVM-ers know if you need support or encouragement. We’re here for you. I’m wishing
you the best of luck.
Hello Sharon, It’s nice to meet you. Thank you for your welcome and your
comments. Although I don’t know you much yet, I have to admit that my
emotions went up and almost started to tear up when I read “my AVM did not
show up on the film.” I’m so excited for you. All stories on this site
provide strength, both those that suffer set backs and fight through it, as
well as successes like yours. Thank you for reaching out to me.
Micheal, thank you for your uplifting, positive reply, well seeing how I
just got this news, my first concern is if either one will except my
insurance,I would prefer barrows over mayo, but they are both
acceptable, it’s been less than 24 hrs, so still evaluating, I have an
appt, with primary doc on Tuesday, can’t go to either one without
referral, that’s if they take my insurance,. Something tells me I’ll be
doing my neurology work at Wal Mart, ( I’m kidding, trying to be funny).
I’ll do it at church before that, thank you for being there, you take
care, keep you posted, good day,