Replies to This Discussion

Permalink Reply by Rebecca on February 5, 2010 at 7:58pm

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!

Permalink Reply by Mary (Jaime's Mom) on February 5, 2010 at 8:57pm

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.

Permalink Reply by edie pantelis on February 6, 2010 at 7:08am

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.

Permalink Reply by Susan Troop (Lindsey's Mom) on February 6, 2010 at 7:29am

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.

Permalink Reply by Susan Troop (Lindsey's Mom) on February 6, 2010 at 7:30am

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.

Permalink Reply by Janice Brown (Andrew's Mom) on February 6, 2010 at 9:12am

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.

Permalink Reply by Melanie & Joshua on February 6, 2010 at 11:00pm

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.

Permalink Reply by Marla Post on February 15, 2010 at 6:15pm

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.

Permalink Reply by Erica on May 8, 2010 at 7:23pm

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.

Permalink Reply by Melanie & Joshua on May 10, 2010 at 8:15pm

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.

Permalink Reply by Maggie (Austin's mom) on May 12, 2010 at 10:34pm

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!