Introduction, my story and questions!

Just thought I’d introduce myself and share the journey that has brought me to this point. Earlier this month I had dropped my foster son off at school and as soon as I returned home I had a killer headache that came on all of a sudden. I am not a person that has ever had regular headaches or migraines, so the pain was significant to me. I tried to take the max recommended dosage of Ibruprofen (which I now know wasn’t a great decision), tried to shower in hopes of relieving the pain, and eventually tried to take a nap. None of those worked and after waiting around about a day and a half with the pain I finally broke down and called my doctor who advised me to go to the ER. Once there I was taken in for a CT Scan and then immediately had an IV in me and was rushed to a downtown Boston hospital. The doctor came in and told me to make arrangements for my son for and told me I have an AVM and I’d probably be in ICU for a few days. My AVM hasn’t bled or ruptured and I had an angiogram done the next morning. Recently I had a consultation and was scheduled for embolization on Dec. 29th. My AVM is located in the back center of my brain and was pretty large so they ruled out surgery. I’m going to seek out a second opinion even though I’m fairly certain I’ll be told the same thing. I figure it can’t be bad to get a second perspective. Since I’ve been home I’ve been suffering with bad headaches behind my right eye and was taking some strong prescription medicine (although I’m now just on a couple Tylenol every four hours or so since I was told to ween myself off of the prescription medication) My questions are…

  1. The angiogram wasn’t a pleasant experience and was painful…should I expect the same level of pain or worse with the embolization?

  2. Will the headaches get worse before they get better (after the embolization procedure)?

  3. What was the average time in the hospital for each of you who had treatment?

  4. How many treatments should I gear myself up for?

  5. Any comments or advice you can pass my way?

Thanks everyone and its great to find a support network like this!

Keith

welcome to this lovely little home. I too was so happy to have found it. you will find people hear with similar stories to help you and you may help them to. i dont know much about embolization as i had a crainiotomy. i just wanted to welcome you. bless you my best wishes

Hi Kevin,

Welcome to the group! I’ll try to answer some of your questions.

  1. I think the embo’s and angio’s are close enough in process that you won’t experience any differences between the procedures.

  2. Chari’s headaches (quick onset and departure, but intense) were stronger prior to the embo’s, and didn’t go away until the AVM was gone.

  3. Chari had 3-4 embo’s. If your AVM is large they usually treat it in multiple sessions to lesson the pressure on the brain and give it time to recover, rather than doing it all at once. Her embo’s were about a week apart. Embo on Monday, overnite in ICU, discharge from hospital straight from ICU. We’d sleep most of the first day (can’t sleep in ICU–too much commotion), take it easy the next day, then do normal stuff for the rest of the week/weekend, then do another embo.

  4. of treatments? No clue. Depends on size, location, etc.

  5. Comments? Well, suggest you take an MP3 player with you with relaxing music–you have a lot of wait time. REST at every opportunity you get, before, during and after. When you start feeling better after the embos, DO NOT PUSH YOURSELF! Embo’s and the AVM are big impacts to your brain and body. It takes time to heal.

Chari’s biggest comment–Find out before the embo starts WHO is going to remove the tube when you get to ICU. Tell that person you expect them to follow your gurney to the ICU! Once they remove the tube from your groin, you have to lie flat on your back for 6 hrs–this is on top of being on your back during the procedure. One time she awoke in ICU, and mentally had clicked off two hrs of the six hours of lying flat–then she found out they hadn’t come in to remove the tubes. YIKEEEEEEEEEEEEEES, was she po’ed.

Best Wishes,
Ron, KS

Welcome Keith. First off I’m from MA but have been in TN for 6 years now. Boston has great hospitals, you are in good hands!! :slight_smile:
I was in your shoes almost a year ago. I was diagnosed with an avm in my left parietal lobe on Dec 4, 2008. My neurosurgeon said that surgery was not an option, too risky. His recommendation was to have embolizations followed by stereotactic radiation. As far as how many embo’s they determine that by how many arteries they need to inject with the glue. In my case there were 3 or 4. I can’t remember exactly how many but mine took two embo procedures. I was admitted into the hospital and was released the next day. The procedure wasn’t bad as I was totally asleep. I did have some headaches for about 4 or 5 days after the procedure but tylenol helped and then I didn’t get any headaches until after I had the radiation. I had LINAC radiation on Sept 17th, 09. I started to get headaches this past month but again tylenol helps. Everyone is different so I don’t think I could tell you anything about how you feel after your procedures. I was lucky and felt pretty much great. :slight_smile: I wish you the best and am glad you found this website. It has been so wonderful to come here and share my story and be able to hear other similar stories. It’s a great support network!
May I ask how old you are? I was diagnosed at 38. I find it pretty amazing I’ve lived with this all my life and just found out! Crazy! I am married and have three beautiful children to live for. I know I’ll get through this. On top of my diagnosis my husband was diagnosed with thyroid cancer. It’s been a crazy year but we are strong and will conquer! :slight_smile:

I am 49 and AVM in brain stem area - so surgery was not an option. AVM was diagnosed in April 09 with throbbing headaches. Went thru 2 Onyx glue embolizations. 1st embo went great. Had a stroke after 2nd embo, resulting in weakness on left side of body & double vision. Had 7 Feeder vessels, 2 plugged during 1st embolization. 3 during 2nd embo. I never had a bleed.

  1. As stated by another member, Angio and Embo procedures are similar from pain perspective. Yes, you should follow instructions not to move your leg after procedures.

  2. Never had severe headaches before or after embo - so can’t comment on that.

  3. 1st Angio and Embo took 3 days in ICU. 2nd Embo took 4 days in ICU, followed by 4 weeks of rehab due to stroke.

  4. Leave this to the doctors. They would decide based on your specific details.

  5. There are good days in life, and then there are bad days. As one of the philosophers has stated, when you are really depressed, look at people with worse conditions, when you are very happy, look at people who are happier. Nothing is stationary in the world - life goes on!

Hi Rachel! Thanks for your reply. This site has been so helpful to me so far in my journey. What area of MA did you live in? I live in the South Shore Boston region but grew up out west in Springfield. I’m actually 26 years old. Its been crazy to thing I was living life full steam ahead until this slowed me down. Never would have thought…

Rachel said:

Welcome Keith. First off I’m from MA but have been in TN for 6 years now. Boston has great hospitals, you are in good hands!! :slight_smile:
I was in your shoes almost a year ago. I was diagnosed with an avm in my left parietal lobe on Dec 4, 2008. My neurosurgeon said that surgery was not an option, too risky. His recommendation was to have embolizations followed by stereotactic radiation. As far as how many embo’s they determine that by how many arteries they need to inject with the glue. In my case there were 3 or 4. I can’t remember exactly how many but mine took two embo procedures. I was admitted into the hospital and was released the next day. The procedure wasn’t bad as I was totally asleep. I did have some headaches for about 4 or 5 days after the procedure but tylenol helped and then I didn’t get any headaches until after I had the radiation. I had LINAC radiation on Sept 17th, 09. I started to get headaches this past month but again tylenol helps. Everyone is different so I don’t think I could tell you anything about how you feel after your procedures. I was lucky and felt pretty much great. :slight_smile: I wish you the best and am glad you found this website. It has been so wonderful to come here and share my story and be able to hear other similar stories. It’s a great support network!

May I ask how old you are? I was diagnosed at 38. I find it pretty amazing I’ve lived with this all my life and just found out! Crazy! I am married and have three beautiful children to live for. I know I’ll get through this. On top of my diagnosis my husband was diagnosed with thyroid cancer. It’s been a crazy year but we are strong and will conquer! :slight_smile:

Manny, thanks for your comments and advice. They are very helpful to me right now.

Manny Patel said:

I am 49 and AVM in brain stem area - so surgery was not an option. AVM was diagnosed in April 09 with throbbing headaches. Went thru 2 Onyx glue embolizations. 1st embo went great. Had a stroke after 2nd embo, resulting in weakness on left side of body & double vision. Had 7 Feeder vessels, 2 plugged during 1st embolization. 3 during 2nd embo. I never had a bleed.

  1. As stated by another member, Angio and Embo procedures are similar from pain perspective. Yes, you should follow instructions not to move your leg after procedures.


  2. Never had severe headaches before or after embo - so can’t comment on that.


  3. 1st Angio and Embo took 3 days in ICU. 2nd Embo took 4 days in ICU, followed by 4 weeks of rehab due to stroke.


  4. Leave this to the doctors. They would decide based on your specific details.


  5. There are good days in life, and then there are bad days. As one of the philosophers has stated, when you are really depressed, look at people with worse conditions, when you are very happy, look at people who are happier. Nothing is stationary in the world - life goes on!

Ron, thanks for the reminder about not pushing myself…I really have a tendancy to do that and have noticed myself doing the same thing even after the angiogram. Your comments were extremely helpful thx so much!

Ron, KS said:

Hi Kevin,


Welcome to the group! I’ll try to answer some of your questions.


  1. I think the embo’s and angio’s are close enough in process that you won’t experience any differences between the procedures.


  2. Chari’s headaches (quick onset and departure, but intense) were stronger prior to the embo’s, and didn’t go away until the AVM was gone.


  3. Chari had 3-4 embo’s. If your AVM is large they usually treat it in multiple sessions to lesson the pressure on the brain and give it time to recover, rather than doing it all at once. Her embo’s were about a week apart. Embo on Monday, overnite in ICU, discharge from hospital straight from ICU. We’d sleep most of the first day (can’t sleep in ICU–too much commotion), take it easy the next day, then do normal stuff for the rest of the week/weekend, then do another embo.


  4. of treatments? No clue. Depends on size, location, etc.


5. Comments? Well, suggest you take an MP3 player with you with relaxing music--you have a lot of wait time. REST at every opportunity you get, before, during and after. When you start feeling better after the embos, DO NOT PUSH YOURSELF! Embo's and the AVM are big impacts to your brain and body. It takes time to heal.

Chari's biggest comment--Find out before the embo starts WHO is going to remove the tube when you get to ICU. Tell that person you expect them to follow your gurney to the ICU! Once they remove the tube from your groin, you have to lie flat on your back for 6 hrs--this is on top of being on your back during the procedure. One time she awoke in ICU, and mentally had clicked off two hrs of the six hours of lying flat--then she found out they hadn't come in to remove the tubes. YIKEEEEEEEEEEEEEES, was she po'ed.

Best Wishes,
Ron, KS

Hi Keith,

I grew up in Brockton. I lived in Plymouth and on Cape Cod in the mid 90’s to 2003.
Please keep us posted on your procedures.

Rachel

Keith S said:

Hi Rachel! Thanks for your reply. This site has been so helpful to me so far in my journey. What area of MA did you live in? I live in the South Shore Boston region but grew up out west in Springfield. I’m actually 26 years old. Its been crazy to thing I was living life full steam ahead until this slowed me down. Never would have thought…

Rachel said:
Welcome Keith. First off I’m from MA but have been in TN for 6 years now. Boston has great hospitals, you are in good hands!! :slight_smile:
I was in your shoes almost a year ago. I was diagnosed with an avm in my left parietal lobe on Dec 4, 2008. My neurosurgeon said that surgery was not an option, too risky. His recommendation was to have embolizations followed by stereotactic radiation. As far as how many embo’s they determine that by how many arteries they need to inject with the glue. In my case there were 3 or 4. I can’t remember exactly how many but mine took two embo procedures. I was admitted into the hospital and was released the next day. The procedure wasn’t bad as I was totally asleep. I did have some headaches for about 4 or 5 days after the procedure but tylenol helped and then I didn’t get any headaches until after I had the radiation. I had LINAC radiation on Sept 17th, 09. I started to get headaches this past month but again tylenol helps. Everyone is different so I don’t think I could tell you anything about how you feel after your procedures. I was lucky and felt pretty much great. :slight_smile: I wish you the best and am glad you found this website. It has been so wonderful to come here and share my story and be able to hear other similar stories. It’s a great support network!
May I ask how old you are? I was diagnosed at 38. I find it pretty amazing I’ve lived with this all my life and just found out! Crazy! I am married and have three beautiful children to live for. I know I’ll get through this. On top of my diagnosis my husband was diagnosed with thyroid cancer. It’s been a crazy year but we are strong and will conquer! :slight_smile:

Keith I had angio and embo done at same time so not sure. My headaches got better but when they started getting severe, time for another embo. I was in neuro icu for a day…left day after surgery…your treatments are individual. I had there embos, Jan. March and Juen…mine cannot be “cured” with surgery unfortunately too big for I will getting more embos…my neuro wanted me to take a break but I can’t take the headaches so I will be going back on the 16th. Stay positive, surround yourself with positive people. Get as many opinions as you can (and your insurance allows) I had three; unfortunately in my case they though two embos and I would be fine but again all of us here although we share a condition, thee are many stories. After embo, your groin area will be sore. Take it easy and at your pace…no one truly ‘gets it’ but we do here and I have learned alot…going back to my dr. to tell him some of what I have learned here…I am a nurse and foreer hopeful! Hope that helped! Good luck and GOd bless! Mare