Hi... I don't mean to sound ungrateful, but I am extremely curious to know if anyone else has had migraines stop since their AVM. I have a 15 year history of debilitating migraines. Since my occipital AVM resection this past January, my migraines have completely stopped. I still have visual disturbances similar to migraine auras, but never followed by head pain. Has anyone ever heard of anything similar to this? I appreciate any feedback.... thanks!!
Your migraines stopped? I am having surgery april 16th. I have suffered migraines for 20 years. My AVM is in the right occipital lobe and I was told I would lose perpheral vision. Were you also told this? How was your recovery?
If the AVM was the cause of your migraines (without you knowing it). It would make sense to me that they would go away. One of the hidden blessings of having your AVM treated.... :) Good for you!
Ben You seem to have alot of knowledge. Have you had your avm treated? I feel like I have no choice but to have mine treated. I found out about my AVM because of my migraines. I went to the hospital(one of many trips over the years), and the neurologists set me up with an MRI. This was the first MRI I had ever had and thank god. I had an aneurysm that was ready to go 11.8mm and another that is 4.5 mm. I was immediately hospitalized and had coiling done on the larger anni. That is when I found out about the AVM. This is all new to me and I gotta be honest I am pissed off! I was told I could just watch it. But that I would keep getting aneurysms. And the ration for a bleed, 4% a year (I am now 45 years old) that leaves me at a 80% chance of a bleed. With the anni and those percentages what choice does that really leave you with? Sorry to vent but you seem to know what I am going through. Thanks for listening.
Hi. I had occipital lobe avm and just found out this month that it has been obliterated and yes, my migraines have gone. My avm wad a high risk with numerous aneurysms. I had 2 embolisations and have been left with some loss to my central vision.
Hi Susan. It sounds like you had a very good outcome. I am very happy for you. Was you AVM large? How was your recovery? I was told that with the surgery the annis should go away. Were you told the same? Were you left with many defiects?
Tcm423 -- I did have mine treated with GK in 2007. It measured 5 cm back then. I have two small ones left at 1/2" each. But,.. I knew about my AVM since 1991. I had a good surgeon who educated me very well about AVMs. I thank him for that.
Just so you know -- I'm 51 and I'm still here. Along with many others (wink)..:) Another thing -- I never agree with a dr when they say: "Just watch it". That's the most stupidest thing I have ever heard.
Feel free to email me any time you like. I would be more than happy to help you the best that I can. This whole process can be very scary at first. The more educated we are, the better we are to deal with what we have.
Ben. I agree. I guess they have to give you all the options. That is just not an option for me. I figure the best time to have the surgery is now that I am still relatively young and in good health. I would think to have the surgery after a bleed I would not make out as well. I could be wrong but that just my thought. I am so happy there are people that I can talk to and that I have found this group. Thank you for your input and I'll keep you posted.
Hi Tcm423, My AVM was 3 cm and I had 2 embolisations. My recovery was very slow and I have been left with vision loss but I am alive. My AVM is totally away. Have you had treatment yet. Susan
Hi Susan, My AVM is also 3cm. I am due to have embolization April 11 and surgery on the 16th. I was told I would need at least 3 embolizations but am only scheduled for the one day. I don't understand that. I am very nervous. Is your vision really bad? Did the doctor say you could regain some of it back?
Hi. Yes, surprisingly they have completely stopped. Granted, it has only been three months, but that is a huge improvement in itself. Good luck with your surgery... No, I wasn't told I would loose periphreal vision, but I did. I had lots of post op vision issues, most of which has resolved with time. However, I had most of my loss in the lower visual field, and it is still gone. Small price to pay, as I am able to drive. My recovery was quick... I went home five days after admission, and three days after AVM resection. I wanted to get home, but I probably should have stayed at least 1-2 days more. Being up and around at home screwed with my equilibrium, and had some nausea/vomiting issues. Hoping all goes well for you!
Hi... how long ago was this? I keep hoping my vision continues to improve. I am due for my follow-up Angiogram this Friday, and I am a little more than nervous. My neurosurgeon said my AVM was 'cured', but then why the need for another angiogram if it is 'cured'??? Thanks for responding!
That is awesome! I am glad to see you are recovering so well.I only hope I have the same outcome. I am scared to death! But it has to be done. Thanks for the input.
I never had a chance to get scared! Ruptured in Vegas, waited and then drove back to Phoenix. Once they started the morphine, I was the bravest big girl in town! lol... I would have agreed to anything... I think my husband was scared enough for both of us. Good luck though... it truly was not as painful as any sober person would expect. I don't know where you are - but the staff @ Barrows here in Phoenix was phenomenal!
Where you aware you had an AVM at the time? I am going to Duke University, North Carolina. Dr. Allen Friedman will be doing the surgery. He's supposed to be one of the best. I am in south Florida. It will be tough going back and forth but when your fsced with such a surgery you don't just want anyone doing the surgery.
No... had no idea. It ruptured at 4am one morning when I got up to pee. Had no idea what was wrong. Assumed it was some strangely abnormal migraine, but in the back of my mind (no pun intended) I knew something was really wrong. Was afraid at the time it might be some sort of stroke or aneursym. At the time, I had never heard the term 'AVM' before. I think I was just extremely lucky... lucky I live in Phoenix. Everyone I talk to said Barrows is the best in the country, and it happened to be in my own backyard! And you are so right - if you're going to have brain surgery, it helps to have the best. Good luck with the traveling.. honestly - the recovery for me wasn't anywhere near as bad as I expected (again, this was through my morphine induced cloud!). I hope all goes well for you... if and when you are up to, please let me know how you made out. It really is nice to have a place to talk to people who have walked in my shoes!
No, my migraines have not stopped. I never knew that my headaches were even migraines until my AVM finally blew. I just thought they were regular headaches, everyone describes them differently. Pre-bleed, all my headaches were in the spot where the AVM was. I would ask my husband to rub that spot on my head all the time; Idk maybe the pressure he would put on it made it feel better or something? Sometimes I would stand on my head against a wall until I felt my head feel like there was pressure so when I came down off my head, the pressure would go away and so would the headache sometimes, or it would feel less intense, now I realize how really stupid that probably was. Sometimes I couldn't be in light or around noise but I thought it was just headaches, never really knew the signs of a migraine; and I hated to take pills before (bad experience in high school), so when I had a headache or whatever I would try to "tough it out." But now, post-bleed and crani by 2 years, the migraines are so much more intense I cannot function at all when they catch me with guard down. I cannot eat, I cannot walk, I cannot be near noise or light or smells. It started, I'd say, roughly 5 months after the crani. They are very sharp. But I know the signs usually within 2-4 hours of a migraine attack so I take medicine and it works about 95% of the time. Just the medicine makes my stomach cramp :/
Hi Kristi, where was your AVM located? Mine is in the right occipital lobe or near it. I have suffered migraines for about 20 years. I never was light sensitive and I did.'t have nausea. I did have optical aura in the left accompanied by headace over my right eye. I did not have a bleed yet but I did have an anerysm coiling and I have another small aneurysm still untreated. I hope the surgery will help but I know nothing is guarenteed. I start embolization in about a week. Oh and by the way, I too used to stand on my head and it helped for a minute.
My AVM was located, as I recall a Dr. saying once "in the flap between the right frontal and parietal lobes." My neurosurgeon said it was also nestled against the motor function region which is why I am now hemiparetic (with weakness on one side). I had no aneurysms that I can recall anyone saying but I had 2 embos. The first (I found out through a facebook post while one day looking through my timeline to see if I posted any info I may have forgotten about- I was right) embo had succeeded in 15% closure; they entered through the right side of the groin. And the 2nd embo was aborted because he couldn't get the catheter at the right angle or something, they entered through the left side groin area which was extremely painful due to the hemiparesis.
I couldn't help but stand on my head, it was like a reflexive thought to do it or something. It made me light headed and sometimes dizzy, sometimes my vision would go white but that minute of relief was always worth it. I never had any signs or indicators until after the crani. My migraines (and this is so weird) they start in my left sinus and move into my left eye. Then it's a sharp piercing pain exactly opposite the location of my removed AVM, like a mirror of my old AVM. After the crani I had severe motion sickness, vertigo and sinus problems. The nurse told me there had been some iodine that was leaking out of my ear, so it's possible there had been fluid in my ear, no idea how or if that plays a role in my migraines. I'm just happy they are somewhat manageable even if it is with another stupid pills.