Hi, all.
I recently found out a couple of weeks ago that I have an AVM on my right temporal lobe. Since then, I have had an angiogram, which was viewed by my doctor, then sent to my neurologist, who decided to have a second opinion. So, all of my information was sent to a university. I am now just waiting to hear back from them to hopefully set up an appointment. Ever since I found out what I have, it's been a waiting game. I really don't know much of anything about my condition other than where it's located. I'm having a hard time having patients, because I'm very active and want to get back to my normal life as soon as possible. If anyone has any advice or anything to help me out that would be great!
Welcome to the group, Jacey. I had a dural AV fistula on my left temporal lobe. The surgeon embolised it with Onyx glue. I had a follow-up angiogram To ensure the AVF is gone. It is so now I have no restrictions and I don’t have to take any medications. Once you get the 2cd opinion from the University Hospital you should have enough information to make an informed decision about surgery options. That’s when this group will become invaluable. I wish you all the best with health. Update us when you have the 2cd opinion.
welcome...be strong knowing you are not alone...so many of us have gone through this or still dealing with it. I to also had mine on my right side of my brain and wait for the neuro's advice on what to do...God bless & keep us posted
Hi Jacey,
I also have an AVM on my right temporal lobe which was only discovered in January after it had bled in September. I had an angiogram at the start of March and since then I have heard nothing further as the surgeons are deciding about how to proceed with treatment, so I am playing the waiting game as well. If I was to give you any advice I would say it can definitely be hard at times but try to stay positive, and when this is sorted there is plenty of time to get back to the things you enjoy doing, and keeping that in mind can help you get through the difficult times. Stay strong
Jacey...Being in the waiting game is so difficult. Please give your Doctor a call and try to get some information. Let him now that just waiting provides too much anxiety...Perhaps he'll listen and get you the results quickly. Stay Strong!
Thank so much everyone for your support! I am hoping to here from the University Hospital sometime today. I will keep everyone posted :)
Hi, Jacey, get your own copies of your scans and records, take a look at the top neurosurgeon's list (http://health.usnews.com/top-doctors/directory/best-neurosurgeons), pick 3 that are convenient for you, and send them your scans yourself. That should speed up the process for you, and then you will be able to weigh different options, instead of depending on one opinion. While you are waiting, read as much information about intracranial AVMs as you can find, especially ones in the temporal lobe, so that you can evaluate treatment options and know which questions to ask. You can being by putting "temporal lobe avm" in the search box at the upper right of this page. Best of luck!
Thanks for the advice! I'm going to contact my doctor today about getting those scans!
I share your frustrations and it feels as though it is a waiting game. I had a stroke on 4/20/12 and the hospital Neurologist only did a Catscan and an MRI which did not show anything. After spending 3 days in the hospital, I was released and followed up with regular doctor 3 days later who ordered and MRA which showed the AVM or Aneurysm which is located on the base of my brain, close to my brain stem. I went to a new Neurologist a week ago and all he said was "I'm not sure what I am looking at, but it's in a different spot". He said they would order a CTA and after 5 voice mail messages that I left for his office, I called my regular doctor who scheduled it in a day and I will have ti done in 2 days.
I have an appointment with a new Neurologist on June 14th but do not know what I can do, not do and it seems that I am in "lingo" until someone tells me something.
I have decided that I am not going to allow this to stop my from living my normal life because like you, I am very active and I do not want to sit around and wait for something bad to happen. So please stay strong, keep positive and know that others know what you are going through. HUGS from Ohio!
Praying for you Kristina! I hope you get more answers soon. I have a great group of family and friends helping me through this, but it is still difficult everyday. I try to resume my normal activities, but it has been very difficult because I have cronic daily migraines because of my AVM, as well as many other symptoms. Everyday is a challenge, but I'm pushing through! Thanks or sharing with me! God bless.
I am a CCM survivor which is similiar but different. Mine were located in my temporal and frontal lobes of the brain. I am 60 years old and have had them all my life, but didn't have to do anything until last year. I am fully recovered and doing well. Baby steps and great physician and education about this disease will be your key. So ,Welcome to the AVM survivor forum. What a beautiful picture you have posted. Ask questions there are no stupid questions EVER ! Physician and hospital are still learning about these Rare diseases...Wishing you all the best each and every day.
Thank you!! I wish you the best as well! I'm so glad you have been treated and are doing well!
A warm welcome to you my friend .... I wish you all the best with your health. Keep this beutiful smile I saw in the picture.
Kind Regards
before my bleed in nov 2011 I had no idea that I had an AVM just thought i was prone to migraines so I went about my life as normal even on the day of my bleed I had taken the children to school, done the housework and was busy looking for christmas presents, and since my surgery another AVM has been found but I thought to myself I can either sit and worry about what may or may not happen or I can put it to the back of my mind and make the most of my time and focus on my recovery. my advise is unless you have been told not to do certain thing,s do what you normally do otherwise you will get frustrated and may develop depression because your life is not as active as you would like it / used to be and this type of news plays on your mind and all you can do is think of the worse case sinarios and you will drive yourself insane doing that.
You have found a wonderful support here with lots of people in different stages of what your going through who are all happy to listen, offer advise and give you information. They are all lovely people.