AVM-partial seizures

[franybug]

My daughter was having odd symptoms (stomach aches, terrible sinus trouble, panic like feelings & personality changes) 3 years ago Jan.  that led her Dr. to do an MRI in Apr 04. They found a non-ruptured AVM. We were told her symptoms had nothing to do with the AVM. Just a miraculous fluke. They advised surgery. She had the AVM embolized first ( it took two times to do it) the following week she had her surgery. The Avm was 3cm by 4 cm. Surgery wasVery successfull. No visible problems. All her symptoms went away right after her surgery.  On follow up angio they found a small risidual they could not get, it is in-operatable.  They recommended gamma knife, which she had in Nov. 04.   For the last 3 years she has been perfectly normal & active. In Apr 07 her symptoms came back. They did an MRI which looked normal. We were told it had nothing to do with her AVM, so we started checking into other possibilities that could be causing her symptom. Her family Dr. did a complete blood work. Normal. He put her on anxiety meds, no changes. Antibiotics for sinuses. No change. We went to an ear, nose & throat specialist, he did CT scan, she has sinusitus. They have her on sinus meds, does relieve sinus symptoms, but not the others. After many conversations with her neurologist he felt she might be having seizures (teenagers have a very hard time describing their symptoms). The stomach ache she always complained of never caused her to throw up or have diarrea. She finally told us it felt as if her stomach was coming up her throat. Well she had an EEG and it  showed abnormal waves on her left side, They say she is having partial seizures. She was probably having them before. (so the symptoms did have something to do with her AVM) They put her on Trileptal. She has been on it for 1 week. We are not seeing any changes yet, but I know it can take a couple weeks. We are waiting patiently. We have the best Doctors. All of them have been great. I am just wondering how common this is, long term effects, odds of controling these kinds of seizures, & is there any support groups out there for teens & moms who have been through these kinds of problems. This has been very emotionaly draining for both of us. thanks for any input.

[Marla13]

I will let you know if I find anything.
It's fairly common from what I understand to have seizures after brain surgery and, or, trauma. My son dazes out sometimes and I was worried it was seizure activity. The answer was no. His EEG showed no seizure activity but he does  show abnormal brain wave activity. This is also common after surgery or trauma. He is currently on Keppra. He gets another EEG in January and I believe he will also get another CAT scan at that point. Youth is an amazing healing power but it still takes time.

Marla

[franybug]

We also felt very lucky after our daughters surgery. This is almost like living it over again. After the surgery I felt almost guilty, because we made it through with hardly any problems compared to what can go wrong. Hopefully the meds will work to control her seizure. It is harder now that she is a teenager, you don't know if some of it just normal teen. Nobody I ask seems to have any support groups for teens. If you here of anything, let me know.
thanks
fran

[Marla13]

There is another posting if you search AVM on the boards it will pop up. There is another member there who goes by AVMOM whose daughter has an inoperable AVM . She is also a teen. She asked about a support group also. I recommended contacting local hospitals or a school social worker to see about support groups. I will repost to her and see if she will reply to you here or maybe you can post to her. As for myself my 12 year old son had an AVM bleed in June and a removal in July so I'm no stranger to what you're going through. We're just lucky in his case that first he survived and second they were able to remove it all. If you feel like sharing thoughts be my guest.
Marla13