My boyfriends AVM stopped bleeding but they did not relieve the pressure by incision. They said the body will absorb the blood on it’s own and until then he cannot have the Gamma Knife Surgery. It has been about a week and a half since his AVM sprung a leak and he is still in so much pain. Has anyone experienced this, or knows how long he will have to suffer. I feel so horrible for him he is so miserable all day everyday. He just lays in bed praying the pressure will be relieved. Any advice?
When my daughter had her bleed, they also didn’t have to do surgery at the time, and it took about 4 weeks for the hematoma to reabsorb, so we could move on to the angiogram. However, her headaches got much better after about a week and a half. When they admitted her to the hospital, they gave her steroids which really seemed to help. She was on those for about 5 days, and also took Loritab for pain when she needed it. That worked for her. Have they given him anything for the pain? I would probably call his doctors if he is in that much pain.
Hate to say it, but I had the worst headaches of my life when my AVM first started bleeding and the pain did not stop for about 4 months. The headaches made it almost impossible to sleep, very difficult to function, made me so nauseated that I would vomit if I moved, I could barely eat, and no pain medication would even come close to stopping the pain.
On the plus side, the pain did eventually go away and stayed away for a few years before I started having seizure activity and ended up in the hospital and ultimately ended up having a craniotomy.
It took 3 weeks for my daughters “brain juice” to run a champagne color. She needed a ventriculostomy to relieve the pressure. She was on pretty heavy pain killers most of that time and got severe headaches when the meds started wearing off. You should talk to the doc about the pain he is in.
He is on two percocets every four hours and they are slowly taking him down off the dekagon they gave him (steroid) today he says his head is at about a 5 and 1/2 but that is on meds. I am just worried for him… he is 25 with a decent sized AVM in his right temporal lobe he has not seized or anything like that… did your daughter have the Gamma Knife or were they able to do the glueing procedure for her?
Susan Troop (Lindsey’s Mom) said:
When my daughter had her bleed, they also didn’t have to do surgery at the time, and it took about 4 weeks for the hematoma to reabsorb, so we could move on to the angiogram. However, her headaches got much better after about a week and a half. When they admitted her to the hospital, they gave her steroids which really seemed to help. She was on those for about 5 days, and also took Loritab for pain when she needed it. That worked for her. Have they given him anything for the pain? I would probably call his doctors if he is in that much pain.
where is your AVM located?
Jake M said:
Hate to say it, but I had the worst headaches of my life when my AVM first started bleeding and the pain did not stop for about 4 months. The headaches made it almost impossible to sleep, very difficult to function, made me so nauseated that I would vomit if I moved, I could barely eat, and no pain medication would even come close to stopping the pain.
On the plus side, the pain did eventually go away and stayed away for a few years before I started having seizure activity and ended up in the hospital and ultimately ended up having a craniotomy.
We are on the same boat, my son’s avm bleed on Dec 13, a week later the blood was absorbed according to the last CT. By new year he was feeling much better. But the headaches came back again, now he has a headache almost everyday.The headache are not that bad… except this week…headache since tuesday.We went to the dc today and he said that the healing process will take from 4 to 8 weeks. I am looking for anwsers too. I hope your boyfriend feels better soon.
Lindsey never seized or anything either. We have opted for embolization (gluing) followed by surgical resection, instead of Gamma. She is having her embolization next Wednesday, and surgery on Thursday morning. We are (hopefully) nearing the end of this! At least the pretreatment phase for sure. We are nervous, but eager to get there. We are praying for you and your boyfriend. I know it is a difficult journey full of questions and hard decisions. Lindsey is 10, with about a 2cm AVM in her Left Frontal Lobe. They will know much more about your boyfriends AVM when they are able to do an angiogram. Hang in there!
Sarah said:
He is on two percocets every four hours and they are slowly taking him down off the dekagon they gave him (steroid) today he says his head is at about a 5 and 1/2 but that is on meds. I am just worried for him… he is 25 with a decent sized AVM in his right temporal lobe he has not seized or anything like that… did your daughter have the Gamma Knife or were they able to do the glueing procedure for her?
Susan Troop (Lindsey’s Mom) said:When my daughter had her bleed, they also didn’t have to do surgery at the time, and it took about 4 weeks for the hematoma to reabsorb, so we could move on to the angiogram. However, her headaches got much better after about a week and a half. When they admitted her to the hospital, they gave her steroids which really seemed to help. She was on those for about 5 days, and also took Loritab for pain when she needed it. That worked for her. Have they given him anything for the pain? I would probably call his doctors if he is in that much pain.
My AVM is located in the center of the brain; surgery and embolization was not an option; gamma knife took place 9/30/09; headaches started 8/15/09 this is what lead to finding the bleed and the AVM; now dr. doesnt want to give me pain meds said that it will only “mask” the problem; i am on topomax for migranes and now dr. gave me steriods for inflammation incase that is what is causing the headache. I dont understand what is matters if they “mask” the problems …it exists!!!
when i say headache, it is not just like a headache, it is also a pain all around the inside of my head, one person on this website described it as a way the AVM is fighting back. it makes sense to me. i understand that we have something wrong i just refuse to think that we should have to be in pain everyday.
what are some of your experiences with dr. and medicines for headaches?
He is having Gamma Knife on Feb 12… how long did your headaches last after the Gamma knife? He hasn’t had his procedure yet he is still healing from the bleed itself. His headaches are waning but still there constantly all day long. I am hoping that his AVM goes away after the prodedure. Are yours still with you?
Tina Bodin said:
My AVM is located in the center of the brain; surgery and embolization was not an option; gamma knife took place 9/30/09; headaches started 8/15/09 this is what lead to finding the bleed and the AVM; now dr. doesnt want to give me pain meds said that it will only “mask” the problem; i am on topomax for migranes and now dr. gave me steriods for inflammation incase that is what is causing the headache. I dont understand what is matters if they “mask” the problems …it exists!!!
when i say headache, it is not just like a headache, it is also a pain all around the inside of my head, one person on this website described it as a way the AVM is fighting back. it makes sense to me. i understand that we have something wrong i just refuse to think that we should have to be in pain everyday.
what are some of your experiences with dr. and medicines for headaches?
Do you still get headaches everyday?
Sarah said:
He is having Gamma Knife on Feb 12… how long did your headaches last after the Gamma knife? He hasn’t had his procedure yet he is still healing from the bleed itself. His headaches are waning but still there constantly all day long. I am hoping that his AVM goes away after the prodedure. Are yours still with you?
Tina Bodin said:My AVM is located in the center of the brain; surgery and embolization was not an option; gamma knife took place 9/30/09; headaches started 8/15/09 this is what lead to finding the bleed and the AVM; now dr. doesnt want to give me pain meds said that it will only “mask” the problem; i am on topomax for migranes and now dr. gave me steriods for inflammation incase that is what is causing the headache. I dont understand what is matters if they “mask” the problems …it exists!!!
when i say headache, it is not just like a headache, it is also a pain all around the inside of my head, one person on this website described it as a way the AVM is fighting back. it makes sense to me. i understand that we have something wrong i just refuse to think that we should have to be in pain everyday.
what are some of your experiences with dr. and medicines for headaches?
yes, i still have headaches everyday; some days are worse than others; my neurosurgeon sent me to a neurologoist and i take topomax daily and it is not helping; i have an appt. with a neurrologist who is familiar with avm’s in march. i have posted questions on this cite about people take for headaches but have not had a response; i dont wont to live with a daily headache.
Sarah said:
Do you still get headaches everyday?
Sarah said:He is having Gamma Knife on Feb 12… how long did your headaches last after the Gamma knife? He hasn’t had his procedure yet he is still healing from the bleed itself. His headaches are waning but still there constantly all day long. I am hoping that his AVM goes away after the prodedure. Are yours still with you?
Tina Bodin said:My AVM is located in the center of the brain; surgery and embolization was not an option; gamma knife took place 9/30/09; headaches started 8/15/09 this is what lead to finding the bleed and the AVM; now dr. doesnt want to give me pain meds said that it will only “mask” the problem; i am on topomax for migranes and now dr. gave me steriods for inflammation incase that is what is causing the headache. I dont understand what is matters if they “mask” the problems …it exists!!!
when i say headache, it is not just like a headache, it is also a pain all around the inside of my head, one person on this website described it as a way the AVM is fighting back. it makes sense to me. i understand that we have something wrong i just refuse to think that we should have to be in pain everyday.
what are some of your experiences with dr. and medicines for headaches?