OK, the more I read on here, the more I realize that just like no two AVMs are alike, it seems like every surgeon has a different follow-up plan, in terms of angiograms (immediately after surgery, 6 mos after surgery etc.) and MRIs.  I am also curious for how long and at what intervals your surgeon will be following your child after the definitive "all clear" and how, with angiograms, or MRIs?  I know that it is very rare that the AVMs reform, but most of what I have read suggests kids be followed for a number of years.  I'm just interested in seeing what is happening for the other kids out there with different doctors. Thanks!

Views: 4

Replies to This Discussion

Our neurosurgeon also wants children followed. He'll do the follow up angio in the fall, which hopefully will be our "all clear". He told us that the larger Dani is physically the less risky the angio is, simply because her blood vessels will be larger so it's safer to do the test. So, she'll be 12 years old. She had the bleed when she was 9 1/2 years old. It doesn't seem like that long ago, but it will be 2 years on May 3rd. I'm terrified of the risks associated with the angio, but we're looking forward to closing the book on this AVM. We had appointments with the neurosurgeon at 2 weeks, 1 month, and 2 months. Then he went to once a year. She also has seen a neuro-opthamologist several times for monitoring because of her vision loss. Dani doesn't have any problems or symptoms (other than the field cut) and isn't on any meds. If she had issues I'm sure she would be followed more closely.

The "all clear"... oh that will be cause for celebration!
Hi Susan,
Hope things are going well ! Jaime already had her follow up angiogram (angiogram/emolization was on a Monday, craniotomy Tuesday, follow up angiogram was that Friday). It was all done in one week. We've seen the neurosurgeon a few times since the surgery (July, September and December). In December he basically said he'd see us again June and from there it would once a year. He said this would be indefinite meaning we'll never really be done with it. We're OK with it though b/c we really love this doctor. (I know I'd have cried if I had to say goodbye forever to the guy who saved her life!) They haven't talked about follow up angiograms, MRIs or anything...they say she's cured. The newer neurologist has her going for the 24 hour video EEG this coming Tuesday/Wednesday. They're also talking about doing neuropsych testing. (did I ever email you that info?). I'd like to believe Jaime is 100% cured with no residual issues but I think I mentioned to you that we have some concerns about excessive forgetfulness so I'm not really sure of where we're at. We plan to address this further with the neurologist this coming week. I think they're the ones steering the ship right now.
instead of multiple angios, jamie's drs decieded to preform a craniotomy, this maybe that j's has had the opportunity to to grow for 30yrs before discovery, she will have to take antiseizure meds for the duration of her life,she will need to have follow up cts, until the all clear is given. since without a blood supply they are not supposed to reform.i feel blessed tat we have so m any years, as, a single mother i don't know how i would have been able to cope. she hasa very good attitude, and has recieved excellent care from her drs', and support from her sister.
Mary, It is so funny to hear you say that about not wanting to say good-bye to your doctor. I feel the same way. I think my husband thinks I'm a bit of a nut case, but there is some sort of emotional (not an unhealthy one, for goodness sake) attachment I think you get to the doctor, when you have been through something so traumatic with your child. It makes me feel better to know that other moms feel the same way about their doctors! :-)

Mary (Jaime's Mom) said:
Hi Susan,
Hope things are going well ! Jaime already had her follow up angiogram (angiogram/emolization was on a Monday, craniotomy Tuesday, follow up angiogram was that Friday). It was all done in one week. We've seen the neurosurgeon a few times since the surgery (July, September and December). In December he basically said he'd see us again June and from there it would once a year. He said this would be indefinite meaning we'll never really be done with it. We're OK with it though b/c we really love this doctor. (I know I'd have cried if I had to say goodbye forever to the guy who saved her life!) They haven't talked about follow up angiograms, MRIs or anything...they say she's cured. The newer neurologist has her going for the 24 hour video EEG this coming Tuesday/Wednesday. They're also talking about doing neuropsych testing. (did I ever email you that info?). I'd like to believe Jaime is 100% cured with no residual issues but I think I mentioned to you that we have some concerns about excessive forgetfulness so I'm not really sure of where we're at. We plan to address this further with the neurologist this coming week. I think they're the ones steering the ship right now.
Yes, my daughter also had a craniotomy, it is the follow-up after the craniotomy that I was referring to.

edie pantelis said:
instead of multiple angios, jamie's drs decieded to preform a craniotomy, this maybe that j's has had the opportunity to to grow for 30yrs before discovery, she will have to take antiseizure meds for the duration of her life,she will need to have follow up cts, until the all clear is given. since without a blood supply they are not supposed to reform.i feel blessed tat we have so m any years, as, a single mother i don't know how i would have been able to cope. she hasa very good attitude, and has recieved excellent care from her drs', and support from her sister.
After Andrew's surgeries they wanted him to have an angio in 6 months. When we got the all clear in October they said another angio in 3 years. They have always indicated that he will be followed well into adulthood. If we get an all clear in 3 years I don't know where we go from there.
We were advised to have an MRI at 6 months and an angiogram and MRI at a year, then just MRIs yearly. We did the MRI at 4 months due to some concern and all was well. We repeated MRI at a year, opted not to do angiogram per another surgeons advise that if it were his own child he wouldn't do it unless MRI showed abnormalities. Scarring was one reason he stated, said at his young age (6 at the time) and the fact that he would probably need more and had already had more, he convinced us not to do it. I think it was the right choice for us. He treated the situation more like we were family instead of a case, if you know what I mean.
Ryan had an angio two days after the AVM removal and it showed all clear. At his one year date we had an MRI with contrast and all was still clear. The doctor said unless there are some kind of new issues that arise he won't need anything else done.
In our case Daniel´s doctos did an angiogram after surgery while still in hospital. Then an MRI one year latter and now he just want to see Daniel in five years, in 2014.
Joshua had a post op angiogram which showed cured but were still advised to have another at 1 year mark...

Melanie & Joshua said:
We were advised to have an MRI at 6 months and an angiogram and MRI at a year, then just MRIs yearly. We did the MRI at 4 months due to some concern and all was well. We repeated MRI at a year, opted not to do angiogram per another surgeons advise that if it were his own child he wouldn't do it unless MRI showed abnormalities. Scarring was one reason he stated, said at his young age (6 at the time) and the fact that he would probably need more and had already had more, he convinced us not to do it. I think it was the right choice for us. He treated the situation more like we were family instead of a case, if you know what I mean.
Austin has had 4 MRI's in the past three years.....we thought today would be the last one. The MRI looked good, but the say the research today is recommending an angiogram. I am not looking forward to that!

RSS

Follow AVMSurvivors and Ben's Friends

To Support AVMSurvivors.org, Click an Ad. Or Two.

Advertise With Us

Photos

Loading…
  • Add Photos
  • View All

Blog Posts

My story

Posted by chels925 on June 3, 2012 at 10:37am 0 Comments

Hello everyone. While I do not have a AVM, mine is only a VM. It is in my right cheek. I have been undergoing treatment for it since 2006. My first treatment was in September 2006. I had some complications (I got an infection and went septic). I…

Continue

I moved on ... but I cant escape

Posted by Dansky on June 3, 2012 at 7:15am 0 Comments

The first rupture of my AVM brought me to total shutdown you could say. from normalcy to all of a sudden a twist of life.

I move on ... but I cant escape...

I was at work (luckily I was in office, crowded, people are present, the…

Continue

Away for 5 weeks

Posted by ramona777 on June 2, 2012 at 3:51am 2 Comments

Hi to all my newfound friends . may not be online much in the next 5 wks but wanted to say to each and every one of you, many thanks for your welcome, friendship and support. be back soon. If anyone can advise me how to join AVM australia? Thank…

Continue

the appioment went.......

Posted by Celina on May 31, 2012 at 8:59pm 2 Comments

it went good he wants to do a big test on me he has to open the top of my leg then put a tiny cam up my leg into my head i will be put to sleep for it he wants to look at it.

Starting to understand everything...

Posted by Hannahpoppe on May 30, 2012 at 12:45am 3 Comments

Hi everyone!

I'm a new member here...

I got diagnosed with AVM this fall. After having really bad headaches for a long time, I decided to visit the doctor. She made the descision to send me on an x-ray and then they saw a 2cm AVM om…

Continue

Of Seizures

Posted by Jaime G. on May 29, 2012 at 7:32am 1 Comment

I'm being treated for Temporal seizures; simple and complex, aware and absence. The 1st one(went undiagnosed)happened almost 5mos post embolization/craniotomy. In Novemember simple happened 1 or so bi-weekly. This Jan I went inpt for longterm…

Continue

Facebook Feature Supports Organ Donation

Posted by Armando A. on May 28, 2012 at 8:02pm 0 Comments

We never realize the value of organ donation, until we're on the receiving end.…



Continue

NUMBNESS

Posted by josh54 on May 28, 2012 at 12:20pm 2 Comments

My AVM was near my right lateral ventricle. It ruptured (very painful) and I had a crainiatomy. After the surgery there were difficulties and I was in a ten day coma. When I awoke the AVM was removed successfully but as a result I have numbness,…

Continue

© 2012   Created by BensFriends.org

Badges  |  Report an Issue  |  Terms of Service