Replies to This Discussion

Permalink Reply by Karen O'Leary on June 6, 2011 at 9:19am

Hi Tawnya,

My son was 15 when he had his first seizure which they actually thought was a stroke. They found the AVM right away as it is quite large and prescribed anti seizure meds that day. He was on Dilantin for about 6 weeks and switched to Keppra. He has done well on the Keppra for the last 2 years but is on a high dose. Dilantin is an "old" drug and Keppra is one of the newer anti seizure meds. but from what I've read and heard, there are many meds. and it is finding the one that works most effectively for your daughter as all the meds. have side effects. The most difficult side effects for my son has been the fatigue and intense mood swings. Vitamin B6 helped with the intense moods and he has just done his best with being tired ALL the time! There were 3 treatment plans on the table before the angiogram, surgery, gamma knife and embolization or a combination of two but AFTER the angio, there was only one treatment plan because of the size, location and ventricules and arteries involved. He has had 2 gamma knife treatments in the last 18 months and the AVM has shrunk in half! It's working!!!!!!! He is headed to college in the fall and will have an angiogram next July to get the final results. It has been a difficult journey but he continues to look ahead and be thankful for each and every day!!  Hope this helps and please let us know if you have more questions and concerns!!

Permalink Reply by Lillian on June 6, 2011 at 9:54am

Hi Tawnya,

 

My 14 yrs ago son had a seizure last Christmas and the CTscan confirmed that he had AVM in his right frontal lobe.

He had embolization followed by surgery.  We seeked two opinions on his case and both docs said surgery is the best option in my son's case.  Tawnya,  each AVM case is unique, ask the docs about the pros and cons of the two options and is it possible for you to seek for second opinion?

Tawnya,  the fact that your daughter's AVM has not bled is a good thing. I'm sure she will get back to normal once she starts the treatment.   Take-care!

Permalink Reply by Melissa on June 11, 2011 at 12:19pm

Hi Tawnya,

My daughter Berkeley was diagnosed with her right frontal AVM last August. We sought opinions here in Florida and also at Johns Hopkins.  We travel to Baltimore for treatment.  She had her angiogram in November and she had her LINAC done December 2nd.  Similar to the Gamma Knife.  We returned June 2nd for here firsr MRI follow up and the AVM has started to shrink!  She is on Keppra for seizures, which is why she was diagnosed, and her AVM has not bled.  Her doctors are Dr. Lim, Dr. Ahn, and Dr. Kleinberg.  We have been more than pleased with their knowledge and treatment of or daughter.  Feel free to ask me anything and may God bless your daughter. 

 

Melissa

Permalink Reply by Tawnya Sherbondy on June 26, 2011 at 6:27pm

Thank you ladies so much!!  This helps so much to hear from others :) :)  Her angiogram went well.  She is to start generic form of Keppra tomorrow (hoping there isn't a difference from brand name) and her first embo is 8-1.  She will need 2-3 before surgery (gamma knife not out of question though either).  I pray that as we start these meds in the morning she tolerates them well :)  

Take care and thank you again!!!

 

Permalink Reply by Melissa on November 2, 2011 at 9:04am

How is your daughter doing?

Permalink Reply by Tawnya Sherbondy on November 2, 2011 at 9:48pm

Hi there, Thanks for asking. We go to the Neurosurgeon on Monday and get a surgery date then I assume. I am starting to get very panicked. She's doing as well as she can be. Most days doing great :) Take care!

Permalink Reply by kikko on October 16, 2011 at 7:23am

Who is she seeing at hopkins? My daughter goes to john hopkins for treatment, She sees dr. sally mitchell on the interventional radiology. Her av.m turned vm. is internal and external in a very PRivate area. I take anti seizure meds for my migraines. i take topiramate..i hate it. My daughter is treated with embolizations 4 a few yrs ago and now it has come back this time no artirial feed so treating like a painful v.m she started embolizations again on sept 14th.

Permalink Reply by Tawnya Sherbondy on November 2, 2011 at 9:47pm

Hello,
She sees Dr. Tamargo for nuerosurgery and Dr. Gailloud for her embolizations. My one son will see Dr. Mitchell next week to be evaluated for HHT. Good luck to you all! Thanks for the post

Permalink Reply by kikko on November 8, 2011 at 8:06pm

Dr.mitchell had emergency surgery she is suppost to be out until dec 12 at least that is what her receptionist latonya said. She was sending out new appt letters a couple weeks ago. I would call them about this. I had to reschedule my daughters post op/ new mri until dec when dr. Mitchell returns.

Permalink Reply by Melinda on November 30, 2011 at 11:01am

I unfortunately had problems with rescheduling problems throughout my treatment time with Dr. Mitchell. She has a counterpart, a Dr. Cliff Weiss that may be a good bet too just in case you can't get in to see Dr. Mitchell. Hopkins biggest problem is their lack of communication, you've got to stay up on it.

Permalink Reply by Tawnya Sherbondy on November 30, 2011 at 5:06pm

Hello,
Thanks for the info. Ryan actually saw Dr. Merlo and was given a "probable" diagnosis of HHT, not definite like Sadie and I. Yay!

Permalink Reply by Thomas on December 27, 2011 at 11:10am

If AVM is relatively small < 3 cm the gamma knife seems to be very effective with minimum of side effects compared to conventional surgery.