i have newly been diagnosed with avm. I cannot do my job any longer because of the severe headaches, dizziness, nausea etc. Is any one on disability? Is that my inevitable future? I would appreciate some veteren input in regards to treatments and definite what not to dos.
thanks the newby
Welcome...just know your not alone here and there are many ways an AVM can be treated but that is up to your Doctor to decide. Get yourself a good Neurosurgeon that has experience with AVMs and they will guide you in the right direction.
I all depends on the location, size etc etc...good luck & God bless you. Keep us posted
Definitely a long road. I was diagnosed in December 2011 without ever knowing I had an avm. I decided to go for Gamma Knife in Feb. 2012, 2 weeks ago I suffered my first Grand Mal seizure and now I am definitely having serious issues with work, migraines, nausea, I'm definitely a slower version of who I was only 4 months ago. My aptitude, comprehension, multi-tasking skills, even the way I speak has slowed. I was otherwise a normal, healthy, active, 37 year old female. Most people come out of this with no issues, some have many. It's case-by-case really, so it's hard to go by what everyone is going through. Disability is real hard to get, most people get denied the first time around. I'm trying to get it now because I did have to cut my hours in 1/2, plus I lost my license for the next 6 months due to my seizure and with my symptoms, work is almost an impossibility somedays...I'm still waiting on a decision. But I've seen those who have had full craniotimies and multiple seizures a day get denied. Hang in there, and best of luck to you!
Welcome Cynthia,
AVMs are not usually a quick fix. I'm sure some here are on disability, and you might have to do that at least for a short period. Many are treatable and will allow you to regain function.
My suggestion is to get to a good TEAM that treats AVMs and be evaluated by them. Both UCLA and Stanford have treated many AVMs. To my knowledge from several years ago, Stanford had treated more. Going to a team for evaluation usually gives you the best opinions. Neurologists will say "wait and see or try different drugs", Radiologists will say "Treat it with radiation", Neurosurgeons will say "cut it out". Hopefully through collaboration, they will help formulate a plan that is best for YOU, which might involve one or more treatment types.
We were treated by Drs Steinberg/Marks at Stanford, with radiation at Loma Linda (where Stanford does their radiation). Our results were very good, and we were treated very well by all there.
Hope this helps.
Ron, KS
Hi Cynthia - I'm on Disability currently - I'm unsure at this point if that will change at this point. A lot of unknowns - getting used to that.
It does suck not being able to work or do what you used to be able to do; however, I've learned that things could be much worse and to make the most of what I can do through educating others, volunteering or something else.
Hello Cynthia. Your page caught my eye as did your question. I was diagnosed in 2009 when I had my huge bleed. I'd been having multiple small ones for about a year prior but didn't know it. From sept 2009-Aug 2010 I received state disability. In Aug 2010 I applied for federal and well...I'm still waiting. I have the backing of my first neuro who saw me in Riverside in 09 and the backing of my neurosurgeon and radiation oncologist at UCLA who've been treating me since 2010. During the course of my application I've had three other bleeds, am in pain literally all day everyday (head, neck, back, tailbone, seizures etc) and have been denied twice. Apparently it doesn't help that I'm 27 and "look" healthy and able but they have no idea what's going on inside. I hardly sleep because of the pain and well....life is just rough. I wish you the best and my suggestion would be to get an attorney in line to help you. I had even had the support of my congressman (a rep from his office) but like I said, because of my age and how I appear on the outside I've been denied and denied and denied. You are not alone in your frustrations and you'll be in my prayers........... best to you and God bless you in your endeavors and the road ahead. Also, I do some volunteering with hospice patients. It helps me keep my head on straight and to not focus entirely on my negative experiences and life as it is now.
Jessica
Hi Cynthia,
Disability isn't inevitable; treatment can reverse a lot of problems. An active AVM is a high-blood-flow spot that "steals" blood from the rest of the brain, which can lower all your functions. Treating the AVM improves blood flow throughout the brain, so you can see improvement instead of just preventing future problems.
If your doctor finds your AVM untreatable, or if you have any reason not to trust his/her opinion, be assertive about getting a second opinion. You'll want to see a doctor who has treated many AVMs, and ideally one who works on a team, so you have access to all their knowledge instead of one person's specialty.
JH
Thank you so much for your reply! I have felt so isolated dince this happened. How did the process go for you to ultimately need disability if it isnt too intrusive to ask? It wouldnt be so bad if I didnt have my son to take care of and I am running out of money and time.
Cynthia
Thank you so mech for your reply! I feel so isolated since this started. Was the process to get disability difficult? How did your need for disabillity come about,if you dont mind sharing? I hate even asking but I am running out of money and time and I still have a son living at home. What kind of treatments have you tried?
Thank you for your comments. I feel like I fell into another world with this avm. You can tell that alot of doctors dont know much or anything at all about them. I am in California where have you gotten good treatment?
I am sorry to hear that you are in pain everyday but I can totally relate! Who did you see in Riverside? I just moved to San Diego from there. Wow you are young to be going through all of this. I am 48 and this is the first year I have known I even had an avm. I will keep you in my prayers. Cynathia
Thank you for your comments. Can you give me any insight as to how I would go about getting seen by doctors there? Do you have to request it or do you need to be referred? Cynthia
Thanks for sharing your experience.It helps to know Im not alone with this and have so many to ask questions and get support. I hope you have a good support system around you at home.God bless you
Thank you I do feel welcome. Can you give any tips to finding a neurosurgeon with experience with avms?Is there a site to go to? So far I havent found what I need. Cynthia
My husband was treated in the midwest, at Rush. I've heard a lot on this site about the docs at Stanford, so that's definitely worth a look if traveling that distance is at all possible.
When we were picking a doctor, one thing we did early on was to do a "google scholar" search (scholar.google.com) for articles by that doctor; if a doctor is publishing articles about AVM treatments, it's one good sign that s/he's an expert. Then when you go in for an appointment, you can ask questions about how many AVMs they've treated, what treatments they and the team are familiar with, and whether they've seen your type of AVM before.
how is your husband now? I hope he received what he needed. thank you for that info I have that come up alot. Do you have any tips for me to give my family about this process? This has been hard on them as well
I live on San Diego and an 27. Was diagnosed with a cerebral AVM in my right perineal lobe in oct 2011. DMV revoked my license becaus when it bled I had a seizure. I looked up state disability online and my doctor filled out the forms and I was granted disability pay. My doctor is Dr. Frank Coufal he works at Scripps La Jolla. You do need to be referred to him. And your insurance group needs to be changed to Sd physicians medical group. Then ur primary care doctor can give u a referral to him. I had a craniotomy done may 2012. The whole insurance issue took me 8 months to get resolved and ready for surgery. I am awaiting a CT scan to see how everythig is going. I am still in anriseizure meds and am still not allowed to drive. That is the next thing I will work on.
Ive been trying to claim dla since december when i recieved my surgery date! I got refused! I have now had two ops and still no money from dwp. i am so annoyed at this as i have contributed all my life with NI and Tax and dont seem to be getting a penny back! i wish you all the very best! xxxx
Hi Cynthia,
I was diagnosed with an AVM in my cerebellum in late September. The AVM ruptured early one morning and, long story short, after an unsuccessful embolization, I had to have a crainiotomy to remove the AVM.
Like you, I can no longer do my job of an airline pilot. While I am not on disability yet, I have filed for it. I would suggest you do the same as it can take some time. It is the federal government. I hate it as I have never been, nor consider myself disabled. But I can't fly and don't have any skills that other employers are looking for.
As for advice on treatments. My embolization started out OK, but didn't stick. Apparently it is one of the first treatment options as it is "least" invasive compared to surgery. The surgery was a success as the AVM is gone but as it was in my cerebellum, I am dizzy and have double vision.
The double vision was a surprise and drives me nuts. Hard to adjust after 42 yrs. I am doing vision therapy for the moment and trying to get my insurance to at least cover some of it. The 2x vision may self-correct towards the end of the year, or I get eye muscle surgery via my neuro-opthomologist. That's it in a nutshell. If you want more info, don't hesitate to ask. Good luck and be well.
Greg
Hello Greg- I just read your story with great interest. Ive just been daignosed(June 15) with an AVM. Ive not even had a consult with a neuro DR yet. My pre rupture AVN was found after an ENT sent me for an MRI after seeing him for balance issues. Im 99% sure my AVM will be in my cerebellum as I've been having balance and visual tracking issues lately. Did you have any neuro type issues before your rupture? I should also tell you I'm 65 years old and have been a college basketall player and coach my whole life....I guess I should feel blessed I havent had a rupture. Best of luck with your 2x vision...sounds like if you can get past that you will be back in businnes....is flying forever out of the question for you now? thanks for reading bballokie
newbie here as well....im pre rupture avm diagnosed June 15. Ive been having real neuro type issue ...balance disorder and visual problems. has your avm ruptured? Either way Id think documentation from your neuroDR would provide a basis to apply for disability....as a newbie I may be dead wrong...just thought Id throw that in.....bballokie