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AVM Survivors Network

How many years after Avm 'removal' you are seeing a neurologist?


#1

I had my Avm surgery-ies back in 2007. 10 yeras avm free. I am still watching a neurologist! Are you too? She asked me this time to have an MRI and depending on the results, she wants to give me some medicine to boost my brain activity. My brain activity is normal. I can work, study whatever, i dont have seizures… What’s your opinion? I think she sees me as a lab rat… I dont think i have to do a MRI. Are you still seeing neurologists, and how many years after you AVM treatment. Thank you. I would like to hear your opinions


#2

Honestly, I would have this final MRI for your “final” results with her, then say your goodbyes and part ways with a smile. If you are not having any side effects and are enjoying your life, I wouldn’t continue seeing her unless something new arises, or seek a new nuerologist at that time. As far as boosting brain activity, natural alternatives such as vitamins are better than pharmaceuticals any day and she should agree with your choice.


#3

My AVM surgeries were back in 2008. I do still see my neurologist for a check up once a year. However, he has only suggested that I take a multivitamin . . . he never said anything about taking medication other than the anti-seizure med I take. He has always advocated me to work out and stay active, but that’s about it.


#4

My AVM bled in 2006 (I was 10) and I had the Gamma Knife surgery in 2007. That resulted in routine MRIs for four years, and then an angiogram to make sure they got everything at the end of it all. However, at that time they found two areas they had missed; each AVM they found was only 2 millimetres by 0.5 millimetres. In 2012 I had the Gamma Knife again, and so began the routine MRIs once more. My last MRI in 2015 showed that everything was gone, but they still want to do another angiogram to confirm. Honestly, I haven’t been back to my neurosurgeon since then. I have always felt like a lab rat, especially because I was often treated in “learning hospitals” where a group of half a dozen students would crowd around me, listen to the doctor without even looking at me, and then move on to the next patient. My parents would like me to have the final angiogram anyways, but since this has been going on since I was ten and now I am almost twenty-one, I really just want the surgery part of my life to be over! However, I suggest talking to your family and getting their opinions. I would have been ready to walk away when they falsely told me that “everything looked good” back in 2011, and while I don’t think the other AVMs would have bled, I guess it was best to get rid of them. As for the medicine to boost your brain, I would not recommend taking it unless you personally feel you need it!
Hope this helps!
-Julia


#5

Had radiosurgery in 1991 with final successful follow-up in 1994. I recently (5 years ago) mentioned to my Family Doctor that I haven’t seen a neurosurgeon in 15+ years and she wasn’t concerned. She did arrange for an MRI to look and see but after it was done the technician mentioned he used the wrong focus or wavelength or whatever and it wouldn’t have seen anything where the avm had been. And that was the last time I’ve been looked at for this.


#6

After my embolization surgery in Jan 2016 I returned to my neurosurgeon 6 weeks later for followup. He felt my recovery was good and no further MRIs etc were necessary unless I experienced problems. In December 2016 I started having severe dizzy spells so my GP contacted my neurosurgeon and he phoned me at home to say he was ordering another MRI and we would wait for results. The results were clear and the dizzy spells stopped. I was glad he took it seriously, saying he was available to me should any more problems arise.


#7

Just shy of 30 yrs, now I seem to be starting all over again, way worse than I ever was pre surgery, I’ve developed a lump on my head and can’t see doc till may 1st, I’m really scared im going to have a rupture or bleed before then,struggling to just make it through the day, everyday, trying to be positive, I’ve been thru this before, hasn’t been easy but survived last 30 yrs, I CAN DO THIS!! this site has made a big difference for me, thank you all very much, I love you all, my mato is, be strong and carry on!!


#8

I know how you feel. Unless you’ve been there, people don’t understand what it is like to live your life second to second filled with fear and pain 24/7. The stress of the uncertainty will only make you sicker. Have you tried going to an ER and trying to get a referral to a specialist sooner? May 1st sounds a long way off when you are scared and worried. Might be worth a try. My thoughts are with you.


#9

Jenny, thank you for your reply,. What your suggesting is how got the
barrows appt, minus the ER, like I said I’m going on 30 years post
surgery, unfortunately I know this AVM thing all to well, at this stage I
pretty much tell the doctors what to do, what tests I need, referrals,
meds,ECT,ECT,my main problems are that my insurance is state assisted so
that’s why getting accepted was such a big deal, also I can’t seem to get
prescriptions filled without major gaps, like right now, going on 13 days
no meds, praying they fill today,but they told me that Monday, thanks
again for thinking of me, best to you, stay strong and carry on,


#10

You see, I’m Canadian and that’s the big difference. No one ever questions cost or coverage. You need it, you get it. It’s an amazing system. I’m so glad I live here.


#11

Jenny, I lived in Vancouver for alittle over a year, when I was like
10, lol, I remember taking the fairy to the islands,I understand you
can drive there now a days,lol again, BEAUTIFUL!! Thanks for feed back,
I have heard mixed opinions on your health care system, so glad that I
works in your favor, that’s how it should be, really appreciate your feed
back, take care, EY,


#12

You say your story is very long and complicated…tell me. I’m interested.


#13

I’m trying, I just did third draft and can’t seem to get it down, let me
sleep on it, get back to you ASAP,


#14

Jenny have you seen my first post on the new members intro, page?? the
moderators recently put together a page for me and gives you a real good
idea, if not or you can’t find it let me know and I’ll start by sending
you a copy, that would be easiest,


#15

Got it. Read it. Thanks


#16

OK, so that brings you up to date, I just turned 53 and the lump appeared
about 6 months ago, it came up on left side right over surgical scare but
has moved it’s self to the right side and has stayed there, I can feel it
pulsing and the size seems to be determined by how my head feels, small for
light pain and larger with more, lots of pressure and my left ear has
been plugged up just prior to lump showing,never thought I’d be back to
square one after 30 yrs, I’m just trying to maintain until appointment in
may, I have to get 30 yrs of medical records, doctors, appt’s, ECT, ECT,
together before then, thanks for your interest, open to any and all
questions or options, good day,


#17

I had my AVM resection in 1998 - so, about 19 years ago. I see my neurologist twice a year. I just had a checkup and will return to the doctor’s office in about 6 months - with blood work to monitor Lamictal levels. Otherwise, I’m doing well.


#18

I had mine in may of 2000 at the age of nine. Had two years of physical Therapy in 2000. Accomplished acquiring my high school diploma and since being released by Dr.Scott, and was quickly released because of progression. I went in to just check my p’s and q’s, but once my doctor in Mobile released me, I have not been required to have any checkups.

Yours Truly,

Tex


#19

I had mine in 2000 and I check in with my neurologist twice a year.


#20

I had my AVM removed with surgery in January 2002, and the last time I saw a neurologist was in September, or October of that year. I was told to come back when
I had “issues” that I needed help with, and so far there have been no issues of much importance in my opinion.

I have asked advice of my general MD when needed, but so far no big problems. The best thing…no headaches in ages!

Good luck to all of you AVM survivors!