"Our experience has been very interesting. We first heard of Dr.Scott though Taylor's neurosurgeon at UAB. The pediatric group at Children’s had released him because his AVM is so complex. Dr.Fisher consulted with Dr.Scott when we had…"
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Ashley Washington
- Eufaula, AL
- United States
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Latest Activity
sylwia left a comment for Ashley Washington"Dear Ashley Washington,how was your meeting with Michael Scott and with Dr. Spetzler in Phoenix?We are looking for specialists who have a broad experience (or the most experience) with treatment of the brain AVMs and AV-fistula by children. Our son…"
"Hi Ashley, Prayers and thoughts for Taylor and you next week when you go to Boston. Hope you get some positive answers. - Cindy"
Ashley Washington commented on Ben Munoz's group Parents of AVM"Its such a new condition that I don't believe that there is much out there. I have a little bit that the genetics doctor gave us. Would you like me to email it to you?"
Ashley Washington replied to Adrian Foster's discussion Need doctor recommendation for Pediatric Brain AVM in the group Parents of AVM"Our doctor in Birmingham consulted with Dr. Scott and I didn't like not dealing with him directly so I started contacting them. It turned out our doctor was giving me select information from Dr. Scott, not their entire converstations.…"
Ashley Washington replied to Adrian Foster's discussion Need doctor recommendation for Pediatric Brain AVM in the group Parents of AVM"We are traveling to Boston to meet with Michael Scott on April 20. We will be meeting with Dr. Spetzler in Phoenix sometime shortly after. I will let you know my opinion on both of these doctors after I meet with them. So far I've liked that…"
Ashley Washington left a comment for Cynthia Schaeffer(Grace's Nana)"We are not sure exactly the dates for Phoenix yet. We are just waiting on them to confirm the appointment. We are going to meet with Michael Scott in Boston on April 20. I want to be extremely educated about Taylor before we go to Phoenix and its…"
"Hi Ashley, How are you and Taylor. I have read in your postings that you will be seeing Dr Speltzer in about a month. I will be very interested in hearing their opinions after the appt. Has Taylor been remaining…"
Ashley Washington commented on Ben Munoz's group Parents of AVM"My sweet little Taylor asked for your son's name tonight when we were saying prayers. That little four year old is the biggest prayer warrior that I know!"
Tim Strong left a comment for Ashley Washington"Ashley, I looked into Boston, John Hopkins I think, We did send our records to Spetzler and I am waiting on them to get and review them. I have researched every corner of the web and he seems to be the best along w Martin at UCLA. Also Bajer in…"
Profile Information
- Are you an AVM survivor, a relative, a friend, or a medical professional? (Required)
- Relative
- When did the AVM bleed or, if there was no bleed, when was the AVM first discovered?
- September 2, 2010
- What is the status of the AVM?
- Active
- How was the AVM treated?
- Not Treatable
- Describe the AVM (location, size) if you know it.
- Front, Right Hemisphere; 6.4 x 3.8 cm
- Please share your AVM experience. (Discovery, symptoms, treatment, recovery)
- My three year old son had a seizure on Sept. 2, 2010. We were sent to Children's Hospital in Birmingham, AL. While there it was discovered that he has an AVM. We have had a ct scan, an angiogram, MRI and MRA. We have met with the doctor in Birmingham that specializes in embolization and we found out that his AVM is too complicated for that procedure. We next met with the pediatric neurosurgeon who would possible perform open-brain surgery. The surgeon said that he would have to remove to much of his brain therefore he will not perform the procedure. We met with the gamma knife specialist today and he said that he could not get a clear target on the AVM so that we would have to just watch it.
The other neurosurgeon we met with said that its not a matter of "if" it will bleed again, its a matter of "when." I am absolutely heart-broken.
Ashley Washington's Photos
Comment Wall (29 comments)
- At 10:05am on April 22, 2012, sylwia said…
Dear Ashley Washington,
how was your meeting with Michael Scott and with Dr. Spetzler in Phoenix?
We are looking for specialists who have a broad experience (or the most experience) with treatment of the brain AVMs and AV-fistula by children. Our son is 5 years old, has a relative big and deep AVM an 2 AV-fistulas. My impression is that there is no time to lose. He has had already TAIs. The longest TAI (6 hours) was yesterday.
We would be truly grateful for any information and sharing of experience. Thanks in advance!!!
- At 8:49pm on August 18, 2011, Suzy E gave Ashley Washington a gift…
Moderator
- At 6:51pm on April 15, 2011,
Cynthia Schaeffer(Grace's Nana) said…
- Hi Ashley, Prayers and thoughts for Taylor and you next week when you go to Boston. Hope you get some positive answers. - Cindy
- At 12:18am on March 29, 2011,
- Hi Ashley, How are you and Taylor. I have read in your postings that you will be seeing Dr Speltzer in about a month. I will be very interested in hearing their opinions after the appt. Has Taylor been remaining symptom-free? Grace has been well. - Cindy
- At 11:02pm on March 8, 2011, Tim Strong said…
- Ashley, I looked into Boston, John Hopkins I think, We did send our records to Spetzler and I am waiting on them to get and review them. I have researched every corner of the web and he seems to be the best along w Martin at UCLA. Also Bajer in Chicago but Spetzler seems to do the most w Avm's . we are hoping to go there in April. Our son has had 4 embos and looks like he needs 1 more and surgery. We are just looking for the best hands to be guided by the lord. I will try n keep you posted and we will keep Taylor in our prayers
- At 4:17am on February 5, 2011, lisa barrett said…
- hi there... my 16 yr daughter as a large avm to and we have ad 3 opinions and all have said they cant treat hers too. ino how u r feelin my daughter seems to be gettin worst everyday..xx
- At 7:35pm on January 28, 2011,
- Ashley, Thinking about you and Taylor often. Hope all is well. - Cindy
- At 8:24pm on January 22, 2011,
- Ashley, I am glad Taylor is doing well. Yes, I agree we are lucky to have the advantage to move slowly instead of the need to move hastily. I pray that Grace may have many years, even decades, without experiencing the serious effects of this AMV! I pray the same for Taylor. Good Luck with Barrows - keep me updated! - Cindy
- At 7:27pm on January 18, 2011,
- Hi Ashley, I haven't heard from you in a little over a week. How are things going with Boston and Barrow's? Have your heard back from them? How has Taylor been? Hope all is going as you hope. - Cindy
- At 6:00pm on January 7, 2011,
Keep me updated when you do start hearing back from Boston and Phoenix. - Cindy
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My story
Posted by chels925 on June 3, 2012 at 10:37am 0 Comments 0 Likes
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…
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I moved on ... but I cant escape
Posted by Dansky on June 3, 2012 at 7:15am 0 Comments 0 Likes
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 0 Likes
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…
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the appioment went.......
Posted by Celina on May 31, 2012 at 8:59pm 2 Comments 0 Likes
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 0 Likes
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…
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Of Seizures
Posted by Jaime G. on May 29, 2012 at 7:32am 1 Comment 0 Likes
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…
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Facebook Feature Supports Organ Donation
Posted by Armando A. on May 28, 2012 at 8:02pm 0 Comments 0 Likes
We never realize the value of organ donation, until we're on the receiving end.…
NUMBNESS
Posted by josh54 on May 28, 2012 at 12:20pm 2 Comments 0 Likes
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,…
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Coffee in Rockhampton
October 11, 2011 at 6pm to October 10, 2012 at 7pm – Some where with good Coffee
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