This could be the best answer to a question posted here I have ever given. I had AVM bleed and craniotomy 55 years ago in 1959. I was just lucky to have had it found, and lucky to have a neurosurgeon who knew what he was doing. I came out of it with a severe vision loss, but that has not stopped me. I got married, had one son (now 33), hated school, but became a Paralegal 2 for a State Department of Justice with just my high school diploma. I lost my husband too soon, but have been able to live on my own for the last 17 years. I can’t drive, and that is my biggest problem. I get around that, too, using planes, trains, and buses. I now have a guide dog for the visually impaired, and he is my best friend and my left side. I am doing well and am now 64.
Beans, Fantastic reply !, Thanks, If back in the "dark ages" they could get rid of it via "surgery" and you have had a full healthy life then I guess now things can only be better or the same :) . Thanks again and hope your well, Take care :)
I too have had the same thought. I feel like I am living on borrowed time. At this time I do not have a neurologist. I need to get one but am tired of all the negative talk doctors give you.
Justice your profile says its gone wouldnt say on borrowed time at all the danger of a rebleed has gone your risks have been taken away try not worry what was there is gone all the best
Having not had a bleed i can't contribute to that side of it but as for upcoming surgery to remove my AVM i am both scared and joyous...... obvioulsy scared witless of my surgery probably the most invasive surgery i will ever have but at the same time once i come out that anesthetic and knowi can talk and move and see i will be so happy and the heavy weight im carrying now willl be gone, i kow the risks of having surgery (unfortunately stents/glue/gamma/radiantion are not an option for it's full blown surgery for me only)But tbh the risks are minimal for me according to my surgeon, he has done 30 avm removals and every one has been succesful so that makes me happier and knowing his speciality is spinal surgery and vascular neuro surgery helps also. October 1st is D day for me, wishing you the best of luck in the removal and I hope you have the same feelings ihave that it's the beginning of a new chapter without fear and without worry of every headache being "that one" xx
If your avm like mine has not had a bleed why are they performing surgery.why is gamma knife not an option. I am being seen at Toronto western. Who is your doctor. Curious question to all in this group who have not had a bleed. How many of you were told that doing nothing is better if any.
Due to the location size and length of my avm which is about 2mm away from the back of my left eye in my temporal lobe radiation, stents and micro surgery are noy am option, this has been confirmed by 4 seperate neuro surgeons, all specialists in vascular neuro surgery, my option is hope it doesn’t bleed or worse or have surgery…the risks associated with bleeding out are worse than the risks of surgery… I’m 33 yrs old… I want it gone so I can live my life… I have seizures amd blackouts… I’m in the uk and have been trying to make this decision for a long time… I want a fear free life and with this avm I am constantly in fear of it bleeding out. … my life at the moment is very limited. . I can’t do exercise I can’t lift heavy objects that includes bending over a d picking up my 2 yr old daughter. … I can’t be alone too long in case I have a seizure… so yes surgery in the opinion of 4 specialists is my ONLY option. So I have my surgery booked fir October 1st this year x
And just to add my Neurologist has said that if you were to be in a room with 100 Neurologists 75 would tell you to treat it (depending on the location etc) and 25 would say no leave it… being in the UK this isn’t anout making money from me… it costs our NHS a lot of money for my surgery. I myself am.not prepared to walk about with a ticking time bomb in my head but that’s me and my decision
Anna, one cannot take it for granted that gamma knife is a better option than craniotomy. Many here have chosen craniotomy as their best option. We have members who elected to have surgery even though their avms were found incidentally and were not causing symptoms. We also have members who decided not to treat their avms. The decision process is highly individual.
I will wait for the angiogram before I make a decision but as strokes run through my family I do wonder about the future with an avm. It has take over my time completely. I just keep on reading and researching.
It’s a tough decision and everyone has a different deck of cards. It sounds like you’ve talked to a lot of doctors and worked the best plan for you and your family.
The part about not being able to pick up your daughter hit me hard. My wife was pregnant with our first child when I had my crainiotomy. When the baby was delivered, I couldn’t hold her by myself. Of course, time fixed that problem and I got to change diapers. Now, she’s 25 and has two younger brothers.
Good luck with the surgery.
P.s. Your comment about 100 neurologists makes me think about a joke. Something about how they couldn’t change a light bulb because they …
Hi Ninja Kitty, Everything will be ok :) , I'm now 5 weeks on Monday from my surgery, 10 hours and I had a bleed during the surgery also but they had this in hand since I was all opened up anyway :) , I've recovered very well with no issues from the surgery and got home after a week in hospital :) , Just waiting to get back to work and here from the DVLA to get driving again :) .
Hope all goes well, Please remember to take it super easy after surgery and rest/sleep is the key to a good recovery :) . Take care !.