I am 22 years old and i was diagnosed with A.V.M. as we all were. Mine is in my frontal left lobe. I’ve seen so many doctors in the past month i can’t count how many. (My guess is over 15 of them) And not a single one of them has told me anything about my condition. They just ask me how i feel and go though the basic questions and they keep telling me that nothing has changed. Ok, that’s fine but i don’t know what’s going on to begin with! I just had Gamma knife therapy the 24th of january, and it being found on the 4th of january i don’t know… This is all just so sudden. I get confused very easily, so it’s hard to concentrate. I have done alot of research myslef tho in hopes i can find someone to talk to with my condition so i don’t feel so empty. I feel like giving up. I have constant headaches, dizziness, blurred vision, weakness and fatigue, numbness in my finger tips and toes, i see spots sometimes out of my right eye, and i have a loud heart beating sound in my head sometimes on my left side. Now ever since the gamma knife surgery, (where they drilled the screws in) they hurt really bad and my neurologist won’t give me anything for pain. He told me he’s not a family doctor and it’s kind of insulting asking him to write me prescription drugs. (like i have a drug problem or something) I know there going to be sore but, when i touch the back of my head around where the screw was i can feel it in the front of my head on both sides. Not with the ones in my forehead tho. And my headache’s have increased slightly. Sorry for writing so much. I just have so many questions and no answers. I’m so scared and i feel alone, and empty. I don’t know what to do. I try to stay positive, but with everything happening so fast, it’s really hard to. I keep telling myself i can get through this.
All of it did happen so fast! As if finding an AVM doesn't stop you in your tacks enough to go from 0-Gamma in 20 days has got to be scary to say the least. You can get through this! I wish I could find the words to make you feel better or even just less confused. I would suggest maybe going to the ER where you had you Gamma done and maybe they would be more able to help than your obviously unhelpful neurologist. I hope your pain eases and you are able to get clear answers about what is going on with your head!
I can assure you, you are not alone in this! I had my GF a few years ago. I can't believe your neuro. won't give you something for the pain - thats just wrong!! I would either go my family doc. or go to the E.R. and demand something for the pain. In the mean time, You ar safe int taking tylenol and ibuprofin, no aspirin - aspirin thins the blood and thats what you don't want to do with an avm. I often use ice packs for my migrains...One on the forehead and one on the back of the neck. It doesn't take it all away but, it lowers to a 'normal' head ache.
The heart beating sound you are hearing in your head is called 'bruit'. It's a phenominom that sometimes occurs from the avm. You are actually hearing your pulse. I get this to sometimes. It's more nerve racking than anything.
I'm going to friend request you so that way, you can email me (if you Like). And you can ask me more detailed questions and I will be happy to help you through this.
My screws on the back of my head were more sensitive than the front ones were too. They do heal and the pain will go away. I have a couple questions: Did you have a bleed? Do you know the size of your avm? Is there any swelling? (that you know of).
I understand your fears and confusion. Mannn..You were in the fast track!! First having a seizure, a run around with doctors, then discovering you have an avm, then right into having gamma knife. Wow!! Talk about being stressfull and traumatising! I think you are normal in feeling the way you do.
Rest, rest, rest... is the most important thing for you right now. Your body needs time to recover - physically, mentally, and emotionally.
Oh, you must not have searched this site to well yet..Your blog isn't that long at all. LOL :)
I too had Gamma Knife in Sept 2009. It was a bit uncomfortable having the screws I felt so much pressure when they screwed them in. I also felt sensitive around the areas for sometime. I would say a couple of months. I just tried to ignore them cause the more I thought about it the more I stressed out. I experienced focal seizures after the treatment and had to go and meds for them. I too feel the weakness and numbness in my hands, arms, legs and toes at times but it comes and goes. I recently found out that i have quite a bit of swelling in the brain but this is all due to the treatment and are things that will go away eventually. I just stay positive and think of good things like how life will change for me when I fight this fight and win!
I was 20 when I found out my AVM and then 22 when I had my first bleed, I am now 30 and have been fighting this frustrating AVM for 11 years but I will never give up and you shouldn't either. I understand when you say you feel alone and are not really sure how to take all this in. It is alot of information for one person. Just try and stay positive and continue doing things you love. Don't let this consume you or your life! If you feel stressed always talk about it with whom ever you feel comfortable don't hold it in if you want to scream, scream, cry, cry or talk then talk. I find when I do anyone of these things a weight is lifted from my chest and even though it might come back in a hour or day or a week in makes me feel better at that moment.
If you need anything or think I can help let me know,
Daniel, you poor guy! I can imagine how scared and frustrated you must be. You go from never hearing about an AVM to suddenly having one and then right on to Gamma.
Your neurologist sounds, shall we say, interesting? I know once you start treatments you may want to stick with the same doctor, but if you're so inclined, perhaps speaking with an different neurologist would help? I think it's so important to have a doctor that you trust and that you can talk to and ask questions and not feel like you're putting them off by asking.
It doesn't sound like you even had a chance to absorb the diagnosis before you started treatment, never mind trying to seek a second opinion. It never hurts to get a second opinion, and at this point you can have your neurologist send all of your records to whomever you choose.
I hate that you're so scared and not getting any answers. You'd think that after such a scary ordeal that your doctor would want to help settle your fears and give you as much information as possible.
In the mean time, look around on this site. You can search "gamma" and they'll be a whole bunch of blogs and discussions that you can read. I hope you get help soon. But know that everyone here is very supportive and will do our best to offer whatever we can in the way of support or advice or knowledge.
Hi Daniel. YOU ARE NOT ALONE. There are almost 2700 of us on this site!!!!! Plus more people join everyday. I agree with the other comments...it is time for a new doctor. Pain does not build character. Now you may want to join a sub-group here...
Go to the main page...scroll down and look on the lower right hand side. You will see groups...scroll further down to see view all and click. I bet there are people who can answer some of your questions.
Can you survive this beast known as an AVM? Oh you better believe it. You were probably not even alive when I had my bleed and I am still here!!!!
Hi Daniel. You need to get your neurologist a copy of an old book called A Taste Of My Own Medicine by Dr. Rosenbaum. It was written by a famous doctor who got cancer and found out what it was like to be a patient!!!
First let me tell you that you are in my prayers. I'm kind of mad at your doc just from reading how you said he's treating you. You have so many questions and are in legitimate pain and it sounds almost as if he's brusing you off like its nothing. The best advice I can give at this moment is for you to do your research. Start reading different web pages with information about avm's. Perhaps your hospital/doc has a website you can view as well. You really had no time to grasp the severity of this and what we have and then you were given the gamma knife and again nothing was explained to you. Do you have a good support system in your home/family/community? This is absolutely necessary. Surround yourself with a few people who love you and who want the best for you.
I'll keep you in prayer.
Hi Daniel, I am a mother of a son who has AVM. He had a major bleed before they realized what he had. He was 22 it happened 8/8/2010. I don’t know how you feel, but I watch my son struggle everyday to talk walk and just do normal things that he has done all of his life. My son’s name is Shaun his last name is Daniels. Daniel if you believe in God trust and know He will get you through this. I am praying with you and for you for a complete healing and recovery.