Headaches after surgery

I have had brain surgery twice and Gamma Knife radiation twice to completely remove the AVM. I still suffer from headaches almost a year after my last surgery. They are mostly annoying but every once in awhile I will get the “throbbing head with every little move you take” headache that is awful. None of the headaches are near what it was when I had my bleed though. Anyone else still have headaches after complete removal of your AVM?

Hi Amanda, I still have headaches and my avm was completely removed via surgery 9 years ago. It’s one of the side effects from the surgery that I’m left with (but is a minor side effect given what could’ve happened if it wasn’t removed). I also get migraines now and I never had them pre surgery. I see a neurologist regularly and I’m on medication to help with the headaches. Cheers, Lou

Amanda
This is just a shot in the dark,but back many years before my AVM I had very bad headaches and after many Dr visits my wife figured out that I had Food Allergys causing my headaches. She noticed that every time I ate peanut butter I had headaches for two days after . Sounds crazy ! I know check this web site and Good luck Gordon
http://www.centerforfoodallergies.com/Headaches.htm

Amanda,
My husband had his AVM removed Oct 2008 and does get a headache every now in then in that area, left temporal lobe. We have tried a few things but having a very hot wet washcloth, ring it out and holds it there re-warming as needed and resting for about 30 minutes. That has stopped many of his, he has tried the cold washcloth route and even drinking a caffeine drink which a nurse told him about helping with headaches but those two do not work for him. He really hates to take meds since he’s on seizure med he doesn’t want to take any chances on interference with that med. I guess it’s worth a try, hope it helps!
Marie & Steve

Thanks for your replies. I’ll just deal with them when they come and one day hope I will be totally headache free. You are right, Lou, I should be thankful I only have this minor side effect because I could have it a lot worse. Just having an annoying headache most of the week gets old but I’ll just take them as they come due to the fact I dont want to see another doctor and get put on any daily medication. Thanks again.

My son had 1 of 3 AVMs resected in 1997. He has continued to have intermittent debilitating headaches, vomitting, dizziness, and blurred vision. They some times get real bad like they are now where he is too sick to go to work and the symptoms get worse with any type of activity. The neurosurgeon has just said that he doesn’t need to operate. Any ideas on what to do? I hate to see him suffer so much. He’s 24.

yes. i have had the headache that i currently have for more than three weeks. i had my surgery a little more than eight years ago. they have done an mri, and it is clear. there is so far no explanation for my headaches.

Hi Missa,

Thanks so much for your response! 3 weeks is a long time to have a headache! What level headache is it? Does anything make you feel better? Have you had other symptoms too?

After quite a bit of research, I’m wondering if these symptoms are being caused by the volume of blood flow or lack there of. Have you ever been seen by a neuro vascular specialist?

missa andrews said:

yes. i have had the headache that i currently have for more than three weeks. i had my surgery a little more than eight years ago. they have done an mri, and it is clear. there is so far no explanation for my headaches.

the level varies from about a five to a nine…symptoms… nausea. sensitivity to light and sound, pain moving, tiredness, sleeplessness. Frankly, i go to sleep with a headache and i wake with a headache. its hard to eat and equally hard to sleep. it hurts to move and look around as well as hurting to hear. which really sucks because im big on music. nothing makes me feel better. i have had an mri, which was normal. the dr. put me on propranolol. it made it worse. he also gave me a nasal imitrex which made me vomit uncontrollably. sooo he tried the pill form of imitrex which did nothing. otc pain meds do nothing. ambien was helping with the sleep situation, but it hurts too much for that to even work now. im just so darn tired. when i had finished and was released from my neurologist, he said that i was normal and that i shouldnt worry about my avm or symptoms any longer. sooo im just not sure what to think. no i have not seen a neuro vascular specialist… i know this answer is full of mispelling and poopy grammar, but i am too tired to correct it.

My gosh! I hate to hear that you are feeling so bad. Do you have a good support system that can help you?

Your symptoms sound very similar to my son. I’m guessing that you don’t have a job. I don’t know how you could with all of this pain. It seems too coincidental for so many people to have such similar symptoms and have AVMs, but for them not to be related. Since I’m healthy, I’m going to continue to find information. I’ll share it with you.

missa andrews said:

the level varies from about a five to a nine…symptoms… nausea. sensitivity to light and sound, pain moving, tiredness, sleeplessness. Frankly, i go to sleep with a headache and i wake with a headache. its hard to eat and equally hard to sleep. it hurts to move and look around as well as hurting to hear. which really sucks because im big on music. nothing makes me feel better. i have had an mri, which was normal. the dr. put me on propranolol. it made it worse. he also gave me a nasal imitrex which made me vomit uncontrollably. sooo he tried the pill form of imitrex which did nothing. otc pain meds do nothing. ambien was helping with the sleep situation, but it hurts too much for that to even work now. im just so darn tired. when i had finished and was released from my neurologist, he said that i was normal and that i shouldnt worry about my avm or symptoms any longer. sooo im just not sure what to think. no i have not seen a neuro vascular specialist… i know this answer is full of mispelling and poopy grammar, but i am too tired to correct it.

thank you! No, I don’t have a job. I was going to school full time, but had to drop out. I missed too much class with this darn thing. Its so frustrating! I hope your son is ok. I don’t think I have a food allergy going on. I can’t eat. I know its not my allergies in general since I take benedryl and it makes no difference. I’ve had my eyes checked and now wear glasses, sooo its not that. This whole headache thing is so aggravating. As far as side effects go: I have jerky thumbs, I stutter,my memory sucks, and have a basic difficulty with comprehension. But still, those are sooooo simple when compared to what the doc said would be the most likely of side effects!
xxmissa

Cindy Nelson said:

My gosh! I hate to hear that you are feeling so bad. Do you have a good support system that can help you?


Your symptoms sound very similar to my son. I’m guessing that you don’t have a job. I don’t know how you could with all of this pain. It seems too coincidental for so many people to have such similar symptoms and have AVMs, but for them not to be related. Since I’m healthy, I’m going to continue to find information. I’ll share it with you.



missa andrews said:
the level varies from about a five to a nine…symptoms… nausea. sensitivity to light and sound, pain moving, tiredness, sleeplessness. Frankly, i go to sleep with a headache and i wake with a headache. its hard to eat and equally hard to sleep. it hurts to move and look around as well as hurting to hear. which really sucks because im big on music. nothing makes me feel better. i have had an mri, which was normal. the dr. put me on propranolol. it made it worse. he also gave me a nasal imitrex which made me vomit uncontrollably. sooo he tried the pill form of imitrex which did nothing. otc pain meds do nothing. ambien was helping with the sleep situation, but it hurts too much for that to even work now. im just so darn tired. when i had finished and was released from my neurologist, he said that i was normal and that i shouldnt worry about my avm or symptoms any longer. sooo im just not sure what to think. no i have not seen a neuro vascular specialist… i know this answer is full of mispelling and poopy grammar, but i am too tired to correct it.

You’re right that even those symptoms are better than it could be, but how do you support yourself? Are you on disability?

missa andrews said:

thank you! No, I don’t have a job. I was going to school full time, but had to drop out. I missed too much class with this darn thing. Its so frustrating! I hope your son is ok. I don’t think I have a food allergy going on. I can’t eat. I know its not my allergies in general since I take benedryl and it makes no difference. I’ve had my eyes checked and now wear glasses, sooo its not that. This whole headache thing is so aggravating. As far as side effects go: I have jerky thumbs, I stutter,my memory sucks, and have a basic difficulty with comprehension. But still, those are sooooo simple when compared to what the doc said would be the most likely of side effects!
xxmissa

Cindy Nelson said:
My gosh! I hate to hear that you are feeling so bad. Do you have a good support system that can help you?

Your symptoms sound very similar to my son. I’m guessing that you don’t have a job. I don’t know how you could with all of this pain. It seems too coincidental for so many people to have such similar symptoms and have AVMs, but for them not to be related. Since I’m healthy, I’m going to continue to find information. I’ll share it with you.

missa andrews said:
the level varies from about a five to a nine…symptoms… nausea. sensitivity to light and sound, pain moving, tiredness, sleeplessness. Frankly, i go to sleep with a headache and i wake with a headache. its hard to eat and equally hard to sleep. it hurts to move and look around as well as hurting to hear. which really sucks because im big on music. nothing makes me feel better. i have had an mri, which was normal. the dr. put me on propranolol. it made it worse. he also gave me a nasal imitrex which made me vomit uncontrollably. sooo he tried the pill form of imitrex which did nothing. otc pain meds do nothing. ambien was helping with the sleep situation, but it hurts too much for that to even work now. im just so darn tired. when i had finished and was released from my neurologist, he said that i was normal and that i shouldnt worry about my avm or symptoms any longer. sooo im just not sure what to think. no i have not seen a neuro vascular specialist… i know this answer is full of mispelling and poopy grammar, but i am too tired to correct it.

nope. they wont let me have disability. i have to go through several steps first to get it. the doctor im seeing right now is trying hard to figure out what my problem is. if it is related to the brain stuff then yes, i will probably get it. at the moment i have school loans, since i just dropped out a couple weeks ago because of the headache and being in the hospital with asthma and migraines… and child support. (i have three little girls with a turd of an ex) i live as frugally as possible.

missa andrews said:

thank you! No, I don’t have a job. I was going to school full time, but had to drop out. I missed too much class with this darn thing. Its so frustrating! I hope your son is ok. I don’t think I have a food allergy going on. I can’t eat. I know its not my allergies in general since I take benedryl and it makes no difference. I’ve had my eyes checked and now wear glasses, sooo its not that. This whole headache thing is so aggravating. As far as side effects go: I have jerky thumbs, I stutter,my memory sucks, and have a basic difficulty with comprehension. But still, those are sooooo simple when compared to what the doc said would be the most likely of side effects!
xxmissa



Cindy Nelson said:
My gosh! I hate to hear that you are feeling so bad. Do you have a good support system that can help you?

Your symptoms sound very similar to my son. I’m guessing that you don’t have a job. I don’t know how you could with all of this pain. It seems too coincidental for so many people to have such similar symptoms and have AVMs, but for them not to be related. Since I’m healthy, I’m going to continue to find information. I’ll share it with you.



missa andrews said:
the level varies from about a five to a nine…symptoms… nausea. sensitivity to light and sound, pain moving, tiredness, sleeplessness. Frankly, i go to sleep with a headache and i wake with a headache. its hard to eat and equally hard to sleep. it hurts to move and look around as well as hurting to hear. which really sucks because im big on music. nothing makes me feel better. i have had an mri, which was normal. the dr. put me on propranolol. it made it worse. he also gave me a nasal imitrex which made me vomit uncontrollably. sooo he tried the pill form of imitrex which did nothing. otc pain meds do nothing. ambien was helping with the sleep situation, but it hurts too much for that to even work now. im just so darn tired. when i had finished and was released from my neurologist, he said that i was normal and that i shouldnt worry about my avm or symptoms any longer. sooo im just not sure what to think. no i have not seen a neuro vascular specialist… i know this answer is full of mispelling and poopy grammar, but i am too tired to correct it.

I had a craniotomy over 4 months ago to remove my AVM. I have headaches all the time ( not in the spot where the incision was…it’s more toward the back of my head and radiates into my neck.) I also have pain in my right cheek if I open my mouth wide. My neurologist said the headaches and the cheek are a result of muscle damage from the incision. He explained that with most muscle injuries, the cure is rest, but you can’t rest the head and neck because your neck has to hold up your head and you have to eat and talk so the muscles in your head will never fully rest.
I am curently going to a chiropractor. I only went once, but he seemed hopeful that he could help in some way. I go back to the chiropractor on Monday. I will let you know if I see improvement.

I haven’t heard of being referred to a chiropactor before. Let me know how that goes. I really hope that it helps you!

Just went to the chiropractor…he said the muscles in my neck are extremely tight which may are may not be a result of the craniotomy…I am convinced it is because i never had headaches before the bleed, so I cant imagine this is just a coincidence. But he said he could definitely help the tightness in the muscles which should help the headaches…i’m tryna stay positive…keeping my fingers crossed.

Cindy Nelson said:

I haven’t heard of being referred to a chiropactor before. Let me know how that goes. I really hope that it helps you!

I just went to the Dr. this morning and he said that I also have a very tight neck. He was a little concerned that he couldn’t get me to relax it. So they gave me a shot of toradol and referred me to a physical therapy place… I guess we will see… The shot did not stop my headache. grr!

mary kate said:

Just went to the chiropractor…he said the muscles in my neck are extremely tight which may are may not be a result of the craniotomy…I am convinced it is because i never had headaches before the bleed, so I cant imagine this is just a coincidence. But he said he could definitely help the tightness in the muscles which should help the headaches…i’m tryna stay positive…keeping my fingers crossed.


Cindy Nelson said:
I haven’t heard of being referred to a chiropactor before. Let me know how that goes. I really hope that it helps you!

I was just talking to a friend who mentioned a connection betweenn chiropractors and strokes…I looked it up onlineand apparently neck manipulation can result in a stroke…it can cause both bleeds and blotclots, so I am kinda scared to go back. i am very disappointed cause i was really hopeful that something would finally help my headaches :frowning:

missa andrews said:

I just went to the Dr. this morning and he said that I also have a very tight neck. He was a little concerned that he couldn’t get me to relax it. So they gave me a shot of toradol and referred me to a physical therapy place… I guess we will see… The shot did not stop my headache. grr!

mary kate said:
Just went to the chiropractor…he said the muscles in my neck are extremely tight which may are may not be a result of the craniotomy…I am convinced it is because i never had headaches before the bleed, so I cant imagine this is just a coincidence. But he said he could definitely help the tightness in the muscles which should help the headaches…i’m tryna stay positive…keeping my fingers crossed.

Cindy Nelson said:
I haven’t heard of being referred to a chiropactor before. Let me know how that goes. I really hope that it helps you!

thats really scary… im not sure if i want to do the therapy now…

mary kate said:

I was just talking to a friend who mentioned a connection betweenn chiropractors and strokes…I looked it up onlineand apparently neck manipulation can result in a stroke…it can cause both bleeds and blotclots, so I am kinda scared to go back. i am very disappointed cause i was really hopeful that something would finally help my headaches :frowning:


missa andrews said:
I just went to the Dr. this morning and he said that I also have a very tight neck. He was a little concerned that he couldn’t get me to relax it. So they gave me a shot of toradol and referred me to a physical therapy place… I guess we will see… The shot did not stop my headache. grr!

mary kate said:
Just went to the chiropractor…he said the muscles in my neck are extremely tight which may are may not be a result of the craniotomy…I am convinced it is because i never had headaches before the bleed, so I cant imagine this is just a coincidence. But he said he could definitely help the tightness in the muscles which should help the headaches…i’m tryna stay positive…keeping my fingers crossed.

Cindy Nelson said:
I haven’t heard of being referred to a chiropactor before. Let me know how that goes. I really hope that it helps you!

I know this conversation is a month old, but I was wondering if your neck pain has been resolved. If a chiropractor is out of the question (and I can understand why!), how about a massage therapist? S/he can work on loosening your neck muscle, and maybe that will get rid of your headaches?

Good luck, and God bless.

Kelly