Having my AVM surgically removed

Hello all.

I just set up my first embolization for next Wernesday. Then I am having the AVM surgically removed. It is located on my motor cortex, which has already caused mild left side weakness. I have seizures 2 or more times a day, even on anti seizure meds. They have all explained the risk of more damage to my left side, but agree that it needs to be removed. I was just wanting to hear from anyone that has had this procedure or has any info that may be of interest to me. I'm a little nervous so please understand. Thanks for your help.

Peace

Dave

I was also told that my AVM was inoperable. I just want to wish you the best of luck and let you know that I will be praying for you, Dave.

hi david,
best of luck with your operation…my avm was located on my right motor cortex and deamed inoperable by many surgeons but the same as you i used to have many siezures and was developing weekness down my left side…finally i found a wonderful surgeon that removed my avm…i was left with left side paralysis…but have continued to improve each day and have relearnt to walk again …it has been a long hard road…and i still have a long way to go …but i do not regret going through with it…i think thats the most important thing of all is no matter what happens have no regrets …stay strong and keep positive…sending you lots of positive energies …my prayers and thoughts are with you at this very scary time xoxox

Hi Alicia,
Thanks for your kind words. I feel the same way you do. If this isn’t removed then It will end up really screwing me up. I feel that I am strong willed enough to rehab as much as physically possible, and that this is the best way to know that I don’t have to worry about it bleeding and causing more damage or even death. Anyway, thanks again.
Peace
Dave

Alicia said:

hi david,
best of luck with your operation…my avm was located on my right motor cortex and deamed inoperable by many surgeons but the same as you i used to have many siezures and was developing weekness down my left side…finally i found a wonderful surgeon that removed my avm…i was left with left side paralysis…but have continued to improve each day and have relearnt to walk again …it has been a long hard road…and i still have a long way to go …but i do not regret going through with it…i think thats the most important thing of all is no matter what happens have no regrets …stay strong and keep positive…sending you lots of positive energies …my prayers and thoughts are with you at this very scary time xoxox

Hello David,

I had an AVM deep within my left temporal lobe. It caused a major headaches, a partial vision loss, and much like you, I was having frequent seizure activity even while taking anti-seizures meds. Most of mine were simpe partial seizures that would come out of nowhere, would last for a few minutes, then they’d be gone almost as fast as they came on. They were never really bad enought that I could not function, they were more uncomfortable and annoying than anything.

While I was certainly not looking forward to having brain surgery, I also did not want to have to spend the rest of my life dealing with headaches, seizures and always wonderign how long it would be before my AVM would rupture.

My surgery was about 4.5 years ago now, and while I spent a LONG 9 months recovering from the surgery and was ultimately left with my right field of vision being completely lost, I no longer have to deal with headaches, have come back with clean MRIs, 99% of my seizure activity has been controlled by medication, and I no longer have to worry about my AVM rupturing.

Be aware than when dealing with brain surgery, there is no definite “yes or no” only a lot of maybes, but the same can be sad about AVMs. The only difference is that it is usually easier for a surgeon to work on fixing a problem before it happens than it is to try to patch up something that has already broken.

Hi David
Your AVM looks almost identical to mine which is also located on my right parietal (motor) cortex!
I guess you mean 7 cm and not mm? I also have a lot of seizures, sometimes more than once a day, and no anti seizure meds helps me either.
I have been doing one embo but have recently been told that they can not do any more for me
(in Norway)…
I read from your discussion that you are having it removed with surgery soon. Which hospital?
Sending you lots of positive energy on your avm free journey.
It would be very nice to know how the surgery go, if you feel like sharing your experience.
Hanne xxx

David, I just said a prayer for you!

We will be praying for you, your family and the doctors. keep us updated.

Thanks Jake,
I totally agree. At least when this is done, I won’t have to worry all the time about when will it bleed. And the seizures are like yours, more of a nuisence, but they are increasing in how many I have each day. Thanks for your reply. I’ll stay in touch and hope to learn and share as this process progresses.
Peace
Dave

Jake M said:

Hello David,

I had an AVM deep within my left temporal lobe. It caused a major headaches, a partial vision loss, and much like you, I was having frequent seizure activity even while taking anti-seizures meds. Most of mine were simpe partial seizures that would come out of nowhere, would last for a few minutes, then they’d be gone almost as fast as they came on. They were never really bad enought that I could not function, they were more uncomfortable and annoying than anything.

While I was certainly not looking forward to having brain surgery, I also did not want to have to spend the rest of my life dealing with headaches, seizures and always wonderign how long it would be before my AVM would rupture.

My surgery was about 4.5 years ago now, and while I spent a LONG 9 months recovering from the surgery and was ultimately left with my right field of vision being completely lost, I no longer have to deal with headaches, have come back with clean MRIs, 99% of my seizure activity has been controlled by medication, and I no longer have to worry about my AVM rupturing.

Be aware than when dealing with brain surgery, there is no definite “yes or no” only a lot of maybes, but the same can be sad about AVMs. The only difference is that it is usually easier for a surgeon to work on fixing a problem before it happens than it is to try to patch up something that has already broken.

Hi Hanne,
I’m having the open surgery at Hackensack University Medical Center. It is ranked in the top 50 in the US. It’s in New Jersey. I hope that you are able to find whatever type of treatment you want. I was told that My AVM was inoperable by 4 other Dr.s until I found the one with the right experience. I wish you well with your AVM. I will be happy to share all of my experiences. I have learned so much and gained much advise and guidance through others testimonials here and maybe I will be able to help others. Take care and good luck.
Peace
Dave

Hanne said:

Hi David
Your AVM looks almost identical to mine which is also located on my right parietal (motor) cortex!
I guess you mean 7 cm and not mm? I also have a lot of seizures, sometimes more than once a day, and no anti seizure meds helps me either.
I have been doing one embo but have recently been told that they can not do any more for me
(in Norway)…
I read from your discussion that you are having it removed with surgery soon. Which hospital?
Sending you lots of positive energy on your avm free journey.
It would be very nice to know how the surgery go, if you feel like sharing your experience.
Hanne xxx

Thanks Marianne,
I am going to need all the prayers I can get.
Peace
Dave

Marianne Callahan said:

David, I just said a prayer for you!

Thanks Daniel,
And thanks for the kind comments on my pics. I am so grateful for my miracle child. She was born at Hackensack Hospital 2 years ago at only 24 weeks. She only weighed 1 pound 6 ounces. She is in perfect health now. She is what makes me want to fight this AVM so that I won’t miss any of her growing up. And my wonderful fiance too. I made that lovebird heart for Jessie “my fiance” for Christmas. I have been playing with that to try to stay busy. Take care, and again thanks for your prayers and kind words.

Daniel A Sadler said:

We will be praying for you, your family and the doctors. keep us updated.

Thank you Ninibeth,
It amazes me that after all that has happened to all of us, we still never lose hope and strive to concur this. Thanks for your kind words of encouragement
Peace
Dave

Ninibeth Ramirez said:

Hi, I am really glad that you find this site. You have the opportunity to now so many great stories that could help you go through this process.

I had my avm hemorrhage on my left temporal lobe without knowing that I have a problem. I have a craniotomy. Before the surgery I was told that maybe I had to decide what language I wanted to stay with, Spanish or English because maybe I was going to lose one of them. I had afasia ( speech, reading and writing problem), my right side was very weak, I lost my right visual field and little short memory problems.

I had 1 ½ year of therapy. Thanks God I am pretty well now, I have learned to manage my small difficulties. The most important is to be confident and look to the future with the idea that you will overcome the obstacles that life puts you. You should see this like a great learner experience.

I wish you the best of looks, be positive as possible.
Ninibeth

Dave SO happy to hear…see I told you never give up hope…what hospital are you having surgery in? Hackensack? Its not that bad and its the unknown that is scary… I will pray and send lots of positive energy to you and your family… What specifically do you need answers to? After the embo you will probably be in ICU for a day… Please keep me updated. I am your Jersey neighbor I am so so happy you are moving in a forward direction and dr. have to always explain risks but you think positive thoughts and all will be fine my friend!!! Who is the dr.? I go to daily mass and will pray for you, your beautiful wife and daughter! They will give you strength…think positively and God willing you can close this chapter of the AVM for good! WHen you get better you and your family can come for dinner for a good Italian meal to my house with my four crazy kids! Set goals my friend and they will happen with positive thoughts. Please update when you can… God bless you all!

Peace,
Mare

Morning Mare,
Funny, as I was posting you a comment on your page, you were leaving me this comment. The embo is going to be done at Valley and the surgery will be at Hackensack. My Dr. is Walzman and my neurologist is ghacibeh. Both top notch. They said that the embo was a same day procedure. That I would be out the same day. I guess it is a matter of how things go. Thanks for your prayers and energy. And, sure, once this process is over, Jessie, Jocelyn and myself would love to have dinner. Thanks again and I’ll keep you up on my progress.
Peace
Dave

Mare said:

Dave SO happy to hear…see I told you never give up hope…what hospital are you having surgery in? Hackensack? Its not that bad and its the unknown that is scary… I will pray and send lots of positive energy to you and your family… What specifically do you need answers to? After the embo you will probably be in ICU for a day… Please keep me updated. I am your Jersey neighbor I am so so happy you are moving in a forward direction and dr. have to always explain risks but you think positive thoughts and all will be fine my friend!!! Who is the dr.? I go to daily mass and will pray for you, your beautiful wife and daughter! They will give you strength…think positively and God willing you can close this chapter of the AVM for good! WHen you get better you and your family can come for dinner for a good Italian meal to my house with my four crazy kids! Set goals my friend and they will happen with positive thoughts. Please update when you can… God bless you all!

Peace,
Mare

I will be praying for you and your sweet family during all the tests and procedures. I know it’s scary, but look at that sweet little girl and draw up all the strength you can from her. She will help you get through this. She and your fiance are so cute. Afterwards you will have to work hard but it will be worth it. We take so many things for granted everyday. But God doesn’t put anymore on you than you can handle… really he doesn’t. I will be praying for God to guide the doctors hands during your surgery. Return as soon as you can to let all of us caring people how you are doing. Typing and making beads will be good therapy for you. I love the your hearts, but would really like to know how you made the clear one. You are young and strong and that will also help you with the recovery. Believe in miracles, they do happen and I will pray for you to have one.
HUGS
Elizabeth

Thanks Elizabeth,
I also saw your post on LE. It really touches me all the res ponces that I have gotten. It all gives me strength and hope. I made the clear heart with the love birds for my fiance for Christmas. I used to work for Frabel Studios when I was in my late teens and early 20’s. You can look at their website, they make some amazing things. It’s made out of clear boro. That’s how I first got interested in glass art. Then I kind of went down a few wrong paths. I ended up in construction up until I found out about mu AVM. I found LE, and that’s when I started doing color and beads. I have about 20 beads that I’m trying to figure out how to photograph. I’ll post them here and on LE as soon as I can. Again, thank you, and I hope to remain in touch throughout this experience. Oh yea, I don’t plan on letting this get the best of me. I have too much to look forward to. Thank you again. If for some reason I can’t get online to update everyone, my fiance Jessie will be able to do it for me. Thank you again.
Peace
Dave

Hi Jason,
I have minor weakness on my left side. The Dr.'s say that I will have some more left side weakness, but they just don’t know until the surgery. I still feel that this is a small price to pay compared to the alternative. I hope the radiation surgery works well for you. I have my final embo on the 8th of April, with the craniotomy the following week. I am both a little nervous, and excited that this nightmare is finally coming to a resolution. I wish you well and thanks for the concern and reply. Take care.
Peace
Dave

Hey David,

I had my AVM operated on 1 year after my first seizure (6/01) and operated on (6/02) my RIGHT temporal lobe was completely removed because of damage from the AVM with in the Temporal lobes are things like the Amygdala, Hippocampus had to be removed with the AVM.

My surgery was done at the (NIH) National Institutes of Health - (NINDS) The National Institute of Neurological Disorders and Stroke on June, 18 2002 and my seizures started again in October 9, 2002, surgery does not guarantee to stop the seizures. I was told by my surgeon (John Heiss) at NIH that the AVM was completely removed and when my seizures started again I went to Johns Hopkins and found out the AVM was NOT completely removed as the surgeon John Heiss told me it was. NIH left part of the AVM in my Right Frontal Lobe and did not tell me that any part of the AVM was left in my brain. John Heiss told me and my family that
he “GOT IT”.

I have been on 7 different anti-seizure medicines and a combination of those 7 right now I am on Carbatrol 200mgs pills and the seizures still happen often just last Saturday (March, 20) I was in Costco with a friend and I had a Grand Mal in the store. Very embarrassing! I have so many seizures weekly everyone around me knows not to call an ambulance to take to the hospital I just have my seizures and in about 15 hours after the seizures I wake up. I just wish I had went and got a 2nd opinion before I had my surgery.

Hi Looking,
I have one more embo set for the 8th of April, then the craniotomy for the following week. I have mild seizures, mainly on my left side I haven’t really had any major ones. I’m curious if you had the grand mall seizures before you had the operation. My Neurologist told me that I might still have seizures for a while after the AVM is removed. I’m really glad that you told me all of this. I’m going to be sure to have a second opinion after the surgery to make sure it is completely gone. Also, I’m curious about the Amygdala and the Hippocampus. What exactly do they affect? My Dr. said that I would have some left side weakness or even paralysis.It just depends on how things go. Thanks for responding, and if you could let me know about the other things I would be very grateful. I hope that things are well with you.
Peace Dave