The treatment that my neuro suggested was both embo & craniotomy, this was their plan. It wasn't just him & his team that suggested this it also involved other doctors from afar. It is the only best option. Radiation was not the best treatment for me because they feared that I would be on the wait list for months to a year. So a couple weeks later I had them done but the embo didn't turn out good. So I had the craniotomy done the same day as embo, instead of having it done the next day for craniotomy. From what I was told by my parents was that the doctor & his team didn't want to wait until the next day. So to this day I am happy with the decision that was made for me & my parents. If I had chosen the radiation treatment.....lord knows where I'd be. And I am not saying radiation treatment is bad, it's just wasn't the best option for me. All I can say is what ever your doctor thinks is best for you, just listen & go with it. Because they are the ones that can save a life & have better judgement in options.
My family (parents, sister, and brther-in-law) decided for me. I had just had an acquired brain injury resulting from my severe hemorrage and was in no condition to evaluate my options myself. They decided, upon consultations with several doctors, on gamma knife stereostatic radiosurgery. I have had two staggered radiosurgeries since and just recently had my first follow-up mri (its been 7 months since last radiosurgery, 10 since first). Im still awaiting for the doctor to read the mri results. However i did see the mri images and they looked rather weird lol
My surgeon recommended an embolisation for mt AV Fistula, which bled causing me to have a stroke. My husband made the decision for me since I was in no condition do do so. I had an follow-up angiogram 9 months later, confirming that I am AVF-free.
My AVM wasn’t diagnosed until after the bleed. I had a spinal AVM located at t-8. Initially they went in to kill it during angio, but found it would require invasive back surgery. I was flown to KU med center in KC, KS the team of doctors went in and removed the AVM and clot which wasn’t easy as there were two vessels in my cord. Happily I am walking with a cane and expect to lay it down soon. My surgery was only 10 weeks ago!
After two bleeds at home and while in the hospital, it took one week to actually find out why my brain was bleeding. Then it was recommended to NOT have surgery because if its location and the fact I was six months pregnant. I was to fly to Mass. Gen. Hospital for some type of laser surgery but the morning I was supposed to go, the AVM bled again. I was comatose and had to have an immediate craniotomy where two AVMs were found and clipped. I was in the hospital exactly five weeks and three months later delivered a baby girl by C-section. I recovered fairly well but do have left-sided weakness. And this was way back in l977. So it will be 35 years since my craniotomy.
My neurosurgeon told me that embolization wasn't an option due to the size of my AVM. A craniotomy carried a high risk of loss of left-field of vision & left side motor deficits, so he recommended Gamma Knife Radiation. I've had 3 GK treatments (6 months apart). My 3rd treatment was 4 months ago. In another 8 months, I'll have an MRI. A year after that, I'll have an angiogram to see how much of the AVM is remaining. He mentioned a possibility of surgery at that time to remove what is left. The MRI at my GK treatment 4 months ago does show that the AVM is shrinking.
My Neurosurgeon advised surgery for my left frontal lobe AVM. During surgeon he found that my AVM was double the size shown on the MRI, and much deeper in my brain. He had to remove viable brain tissue to stop the bleeding to save my life. 3wks in coma, 3mths in hospital and I had to re-everything! Neuro's & Surgeon said I would never get as far as I have. I know this can be seen as a negative story, however, with my full story, it is an amazing "positive" story". As one Neurologist said, "Your recovery is a miracle", and all Neuro's take my 'photo's' to their lectures as my recovery is amazing. I hope this helps James.
The pediatric neurosurgeon has recommended craniotomy for my 5yr old sons right frontal lobe AVM.
My daughter’s first craniotomy was an emergency with no option since it was a life-or-death procedure. However, doctors found residual pieces of the AVM a year later. They told us it was at a great chance for bleeding since it had already bled once. My daughter has had three total craniotomies because this is at risk for re-bleeding.
My understanding is that children are at a much greater chance for regrowth, so recommendations for a child aren’t typical. My daughter has to be monitored regularly. We have a standing order to go to emergency room for any severe headache. She will likely not get a medical all-clear until she’s a young adult – probably 10 years.
I had stereotactic radiotherapy about 2 months ago. My doctor unsuccessfully tried embolization twice. Surgery is not an option.
My neurosurgeon advised me that my AVM is close to the skull on my frontal left lobe and in his opinion, should be easy to get at with surgery.
So I am now waiting for my call to Hospital to get the procedure done.
I really can't wait, it's like living with an Alien in my head and I want ET to phone home and go home!!!
I copied your example word for word - that was exactly what happened!!
As an example, my physician recommended to my family an emergency crainiotomy because my AVM was profusely bleeding, and the AVM was clipped via the glue method. My AVM is now dormant, and not expected to present any future problems.
My situation was an emergency situation. My avm (which was previously not known of) had ruptured, and was bleeding, and the only course of action available, was an emergency surgery in the form of a craniotomy. It was a success, and the avm was removed completely.
I knew about my AVM for 25+ years but May 2012 had a bleed. They installed a shunt. My wife made the decision I'm presuming because I was in no shape to. The neurosurgeon referred me to a cerebral vascular surgeon. The angiogram showed healthy brain tissue tangled with the AVM, so it's back to wait and observe.
My neurosurgeon recommended Gamma Knife radiation for my unruptured AVM. He felt that there was a higher risk of deficits from a surgery than the risk of rupture while waiting for the radiation to shrink the AVM. I've had 3 GK treatments given 6 months apart--June 2011, December 2011, and June 2012. My third one was almost a year ago, and we were able to see an MRI comparison from June 2011 next to June 2012 and could already see the AVM shrinking. I go back in June 2013 for a one year followup to see the status of my AVM.
My situation was almost identical. My unknown AVM bled and elected for a craniotomy since the doctor said the location was optimal to just “get rid of it”. It took 2 surgeries over 3 days and the surgery time was over 15hrs combined. All worked out well, except I was left with seizures (epileptic) which we have been able to control using Dilantin and Lamictal. All in all I can’t complain, but reflexes and sharp thinking will never be the same. It’s funny how much one can learn to adjust to when you have no other choice!
My neurologist decided to treat my symptoms so I am on propanolol, 20 mg twice a day. She sees me every three months to keep track of my symptoms. The list has grown over the past year but still no change in treatment. Trying to get on Disability so I can get a Second Opinion. Medication does not help.
My neruo interventional radiologist recommended embolization of my acquired forehead AVM/fistula with NBCA. He wanted to see if this procedure could be the definitive treatment. I was suppose to return in 6 months for a followup MRI/MRA. Twelve hours post embolization my body started showing signs of a problem. Though still unsubstantiated, it seems I am allergic NBCA. Six weeks out I found this group and was pointed to a surgeon. During week 11, my forehead opened up and spontaneously ejected the embolic agents. The surgeon removed the AVM and as much of the remaining glue as he could reach approximately 12 weeks post embo. He believes that the AVM is obliterated and will most likely not grow back. I am still suffering from the effects of the remaining glue.
Hi...Originally, I think they wanted to just monitor, but once they did the angiogram, the size and location was concerning to the doctors. They originally wanted to do embolization (3-5 sessions) leading up to a craniotomy, but after further imaging (MEG-Magneto Encephalography), they determined that the AVM was too close to my facial function and dominant side motor skills strip, as well as speech and language. They have now passed me onto GammaKnife, and after my first consult in February, I am still contemplating. I have very little issue with my AVM, no real effects or deficiencies at this time. I read and research all of the time, and the feedback and success rates of GK on an AVM of my size (4cm) in an eloquent location, have a reduced obliteration rate of 50-60%, and due to the size and location, can have a lot of side effects based on the radiation they use. I am still at risk for hemmorhage until it is gone, and the radiosurgeon said that it may take up to 6 years for obliteration...IF it is successful.
I just have to get to the point where I am accepting of all that comes by the choice I make. I am just not there yet. Maybe later this summer. I can follow up with you guys if I move forward with GK.
I am still under review with my neuro team due to rapid detioriation in my left side and legs going weaker and weaker ,i was at the point where i could walk 10-15 meters with 2 sticks i am now unable to walk , my recent scan result is being reviewed , i get a horrendous stabbing pain around my scar and also in between my shoulder blades which is slightly worrying .. My surgeon doesnt want to do any surgery but says it cant be ruled out .. They tried to embolize the vessels through a angio gram which as been unsuccessful . my consultant thinks i may of suffered a spinal cord stroke down my left leg , was also getting numbness down my left arm a few days ago and couldnt grip and tingling in my fingers thankfully this as stopped , i feel like i am a ticking time bomb waiting for the big day , so people say to me how can you cope so well and be so head strong .... well my answer to that is i have to be for my son and daughters sake . ive done the tears and feeling sorry for my self i have the saying theres always some 1 worse of than me ... my heart goes out to all avm sufferers and survivors , theres not enough financial help for us we lose our homes and jobs no fault of our own the goverment should be more aware of avms and give us the help and financial support to people who are worthy and deserve it Thankyou steve parry Bury lancashire U/K email me at ... ■■■■■■■■■■■■■■■■■■■■■■■■■