With my AVM they still working on it, can’t get it to stop, I have so bad headaches that will not stop and my eyes go out sometime. I have pain down my life side of my body so much of the time. I can’t lift nothing that is more then 5pound if so my head start to pain and my left side will pain to. Do to this illness I lost my house, all my money and can’t work. I been fighting this for 6years now and steal fighting it now. My
Hi Dee. I have an AVM that was treated with Gamma Knife Radiation 9/6/12. By December I was having some dizziness and headaches, so the Drs did an MRI to check for swelling. What they found was an aneurysm that formed behind my AVM. Scared me half to death. That wasn’t even on my radar. They did an angiogram and said that they definitively saw the AVM was shrinking, and it was feeding the aneurysm. So I was put on a few restrictions and go in every 4 months for check-ups. It is expected that when the AVM shrinks enough, it will stop feeding the aneurysm.
But now, my right leg is going numb more and more frequently. I need to get that checked out.
Hang in there!
Hi, how are you today, I hope well and happy.
My name is Amanda J and I also have a very large (grade 6 ) AVM with an aneurysm smack in the middle of it........there is nothing the Doctors can do regarding either so in my infinite wisdom
I have decided to forget about them (as much as is humanly possible). I know they are there...
but well one day I will be here and one day I wont. It works for me. I used to worry about both
but really there is nothing I can do, so now I try not to.
take care, enjoy and look after number one (that's you ).
Amanda J
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Hello Gina and all of my well wisher when I received Gina's experience regarding radiation treatment for AVM I think I have some hope. But again wondering why doctor told me 10% chance I might be paralyzed or vision lost. If anyone of our AVM group has more information about radiation treatment please share your experience.
Hi Dee,l have 6 aneurysms and a grade 5 AVM on the left side of my brain.The AVM and 3 aneurysms were all discovered at the same time.The aneurysms have been coiled and one recoiled 7 years ago due to the pressure of the AVM. The AVM wasn`t touched. Recently l suffered 2 bleeds in 3 months from the AVM. Currently we are looking at surgery on the AVM. Depending on the size of the aneurysm and where it is situated some are not operated on but just monitored :)
There was an aneurysm lurking behind my avm. The doc saw and clipped it.I guess they like to gang up on us.
Hi Dee, I have a 2mm AVM and had several intermittent bleeds prior to diagnosis. I am managed conservatively on medication and routine scans. Recently got epilepsy but getting on with life.
I had my bleed on April 25,2013.On the 26th they did an Embolization with glue.
I have an AVM that caused the aneurysm and that is what leaked in my brain.
Due to that I had a SCH stroke.At 5 months I was starting to feel a little better had
Gamma knife on September 30,2013 doing ok but have a different kind of headache then before the GK They are worse. My balance is off not back to where I was at my 5 month mark which is a bit frustrating. But overall expect the not driving I have to say I’m very blessed. I go back every 6 months to see if the GK worked. Hope and prayers to you on this journey.
Niyani
Hello, Hope things are better for you.
Yes, I have had 2 aneurysms. I was diagnosed with AVM after I started having seizures shortly after my daughter was born 20 years ago. I had radiation treatment for my AVM. It was monitored and 5 years later I was diagnosed with 2 aneurysms. I do not know if there is a difference, but my Doctor clamped both of them. The radiation treatment was probably not my best choice because after the aneurysms were clamped my left upper skull collapsed. I then had two surgeries to reconstruct my upper frontal portion of my skull. I think having the radiation treatment weakened my bone and when it was opened to clamp the aneurysms it caused my skull to collapse due to it weakening of my skull. I continue to having seizures, but have scans every 3 years to monitor for aneurysms. I hope all goes well. Your are welcome..and God Bless You.
In 2002 I had AVM surgery. I had 2 embolization, 3 aneurysms, and they were all removed. I went back to work after 9 months and retired back in Feb. I haven't had any major problems and I worked at a state prison for 25 years, so it helped me
Hey Dee ,AVM only,I wish you the best of luck with your situation take care Rob W from Canada
Hi Dee,
I Just had my 6 month angio after a craniotomy for AVM resection in May. I was told my 4 mm Aneurysm shrunk 30% in 6 months. I was so happy.I had one Aneurysm (11 mm),that was coiled in January. This is when I found out about this whole mess. I had a AVM in the right occipital lobe. and the Aneurysms were believed to be flow related. I guess they were because the remaining just shrunk after the surgery. I cant get over how good I feel. I had suffered with Migraines for over 20 years and since the operation I had only one. The one headache I had I didn't need to take anything for it. I was so lucky. And I feel like I was given a second chance. Good luck with your treatment. If you have any questions don't hesitate.
Rand: I am about to return to work as a 911 operator after clearance from the police physicians how was it if you can remember the first couple of weeks for you? I am nervous…The reason why I am asking because I read you worked for the state prison system so our jobs are some what similar as far dealing with stressful situations and public contact.
Hi Dee,
I was diagnosed with an aneurysm caused by a 2 inch AVM 5 years ago. The Aneurysm was coiled off straight away as it was bleeding but they couldn't remove or treat the AVM as it was too big and in a inaccessible region of my brain. Initially I was told it was and would be treated with Gamma Knife Surgery but a year later was told they couldn't treat me. I haven't worked since because of the pain and they more or less told me I would have to live with the pain. Been on pain killers ever since.
They did say that treating it would be 50/50 risk of making things worse.
They prefer to pay me sickness benefit rather than pay for the treatment. Things could have been worse though, I am still able to talk, walk etc so the pain is the only down side and not being able to work.
Take Care
Chris
When I had my surgery to remove/repair the damage from my avm that ruptured, they also found three aneurysms..They removed those also..My Dr. told me that because of the AVM I had a higher likelyhood of having aneurysms. He also told me that even though my AVM was removed I still had a higher than average possibility of developing aneurysms again and to monitor my headaches...
I don't want to be a downer but I would not be so hasty to have gamma knife without some serious thought. My daughter underwent Gamma knife for a large AVM sitting on top of her brain stem at Thomas Jefferson. Seven months later she ended up in A. I. DuPont Hospital for Children due to radiation edema of the brain from the Gamma Knife. She ended up with severe permanent deficits to the right side of her body (similar to a stroke victim) and her facial muscles were so severely damaged that she spent 18 months blind before six surgeries were able to restore her sight to some degree. I won't bore you with the details of our frustration with her doctors at Thomas Jefferson but I urge you to carefully consider your decision. Hair loss is one thing but paralysis is something else altogether. I am thankful that my daughter is alive but I regret that the cost to her was so high.
Hi Shirl,
Sorry to hear about the difficulties you've all had with your daughters condition. I consider myself extremely lucky to be in the position I am, as I previously said. The only thing I was complaining about really was the way I was originally treated by my consultants. The said that my AVM can be treated by Gamma Knife Surgery and built up my hopes. At my own expense I was sent to st Barts in London to see the consultant there and was told that he would do the procedure. with help from my MP it took over a year to realise that they applied for the operation but they were turned down by the Primary Care Trust who pay for the operation. They were informed by the specialists in Sheffield that the procedure would take 2 attempts and that my AVM is too close to vital areas of the brain. Im just a bit agrieved by the way I was treated and knowing now how people have suffered im probably better off in the position I am.
Once again appologies for how you have all suffered with your daughters condition. My thoughts are with you all.
Regards Chris
Treatment options depend on the neuro-surgeon obviously. I had AVM and aneurysm diagnosed October 2008, it was a worrisome issue for my husband and I because my doctor was worried. My AVM had grown to be the size of a small orange, and although he could not provide anything but statistics I was clear that it had to be resolved. As I read further, I saw that these rare anomalies are usually discovered at autopsy patient age ranges 35-51, I was 35 when mine was obliterated. IT took a total of 4 surgeries, radiation, and the loss of my beautiful mane. Since my surgery, with treatment I read that these issues can be monitored and resolved but your physician will know best as every case is different. Size does count, however an aneurysm is an aneurysm. It has been found and hopefully with your doctors treatment it will resolve without any evasive procedure. I was monitored and after the surgeries I'm back to living my normal life and raising my son. Take it easy, and God bless you. I will keep you in my prayers.
One of my aneurysms was found when they did the MRI & angiogram the day of my first Gamma Knife radiation treatment (I've had 3). The second aneurysms was discovered during the craniotomy to clip the 1st aneurysm, so they went ahead & clipped it, too. I was very lucky that I had opted for the crani when I did since my neurosurgeon described the 2nd annie as "nasty."
I had my first GK in June 2011; craniotomy for the annies in July 2011, GK in December 2011, GK in June 2012, MRI/checkup in June 2013. I go back in June 2014 for another MRI to see how much of the AVM remains. My first GK & the craniotomy were scheduled during my summer break. I was back to school on time with the other teachers for inservice 6 weeks after the crani.
I did have hair loss in October 2011 & July 2012. My migraines are much less frequent and are less severe since the first GK & the crani.
Dee i had an AVM bleed in my left temporal area when i was 39 in 1989.
My blood pressure was high at the time of the bleed.
I became unconsious and woke up in the emergency room of a rural hospital about 30 mins later.
My bleed was completely misdiagnosed i spent 3 days in hospital until my BP reached an acceptable level.
One week later i started to mix up my words and ended up in a large city hospital where they diagnosed the AVM. In 1989 the only treatment available was to operate and tie off the blood vessels feeding the AVM. I was all for this to take place but the Neurosurgeons decided that they might damage my speech area so they did not operate.
The advice i was given was do not go deep sea diving. do not push immovable objects like cars, do not lift heavy weights, do not play heavy contact sports.
So i spent about 5 years not lifting or pushing cars and feeling really scared when i forgot and lifted a heavy object. I certainly did not dive or push cars, which for a man presented some problems when i was asked to do so by a woman.
I have taken blood pressure control tablets for the last 29 years and i try to keep fit by walking and bike riding.I have traveled the world extensively and hiked all over carrying heavy packs up until now when at the age of 68 my joints are wearing out.
20 years later i was at a Veteran's Hospital and i was sent to have an MRI.
The radiologist who examined the scan if i had not told him that i had had a bleed in the area he would not have noticed a thin line representing the remains of the iron from the blood from the bleed. My brsin had healed itself.
I did pray a great deal and searched the world for alternative advice.
I traveled twice to Russia with Doctor Patch Adams and a world wide group Clown Doctors to work in Russian Children's Cancer hospitals and Orphanages.
This gave me a very large jolt to my worries which sank into insignificance after those visits to Russia.
I have also visited India, China, and Vietnam to be equally humbled by the poor people in these countries.
So all i can recommend to you is apart from watching your weight, eat a balanced diet of fresh food, exercise, and most of all help other people. Older people for example in Nursing Homes are so lonely even if they have families and even if they are suffering from dementia they are human beings in need.
If you put out 1 tenth of compassion to another human you will get back a tenfold reward.
And if this activity only lasts for a couple of hours this will sustain you through the rest of you worried nights.
cheers from Digger.