Anyone in the VA or NC area?

Announcements of local get-togethers and events

Anyone in the VA or NC area?

Postby roxiemoxie4 » Sat Mar 17, 2012 9:07 pm

Hi there! This is all new for me, my son was diagnosed with a 9x9mm CA in October 2011, in the subcortical posterior left parietal lobe. Symptoms were slow to progress and I pressed for an MRI, due to his subtle confussion/loss of balance/visual distrubances and migraine syptoms. He now has been taking atenolol 25 mg - 37mg daily. He will be 9 in May. Neither my husband nor myself have had MRI's to confirm or deny the potential for this to be genetic. Our neurologist stated that presently he would not recommend surgery, unless symptoms worsen of if symptoms become much worse. He could not promise it would never bleed again, or become an aneurysm, but that at least we have a baseline now to follow and monitor. It has been 6 months since his last MRI. He is newly being integrated back into gym, and I see his world getting smaller and smaller as these past few months have gone by, resticting his activities and desire to do what would normally scream at him (he is very athletically inclined and my father played college and pro football briefly). Although we do feel our pediatric neurologist is really very well respected and personable, I of course feel the majority of questions or answers for that matter, are done on an as needed basis and I do not get overwhelmed easily, but would rather have more information to go on. I look forward to hearing from you.

#1 Pressing question is when to I even consider or begin to interview or discuss the topic of neurosurgery?
#2 Meds....I have no idea about studies done long term or short term even, with children and these medications?
#3 I welcome any advice regarding practical conversations with my children (sibling is 5) other than constantly reminding him to be kind to himself and to be his ow best friend, and practice making good and safe choices while still trying to have some fun.

Thank so much and Happy St. Patrick's Day! :mrgreen:
roxiemoxie4
 
Posts: 9
Joined: Sat Mar 17, 2012 8:42 pm

Re: Anyone in the VA or NC area?

Postby amizzi » Tue Mar 20, 2012 2:34 pm

Hey I am so sorry you have joined us! I live in Charlotte, NC - My daughter is now 4 years old and she has multiples. We go to Duke for treatment. She was originally being treated here in Charlotte Area but I wanted a doctor with more knowledge of CAs and willing to learn more as well. 3 hour drive well worth taking every few months.

How far are you from Charlotte ? Would Duke be close enough to consider?
User avatar
amizzi
Moderator
 
Posts: 120
Joined: Thu Dec 30, 2010 2:31 pm

Re: Anyone in the VA or NC area?

Postby roxiemoxie4 » Wed Mar 21, 2012 12:00 pm

Oh I am so glad to have heard from you! YES and YES! I have recently found our so much information here and am so grateful to have stumbled upon you all. We actually will be revisting our neuro ealy next week as my son, Ryan, has had some shifts in personality, and huge lack of energy, and would simply prefer to stay on the sofa and just watch tv for hours. Out of character for him. We see John Wooten, in Raleigh and Dr. Alana Conder for neuropsch. Both in the same day next week. If I did not mention the location of his angioma it is deep in the subcortical, left posterior parietal lobe.

My brother lives in Concord and we are there every other month. And we visit often to Duke Gardens and Life & Science as we are members there. We reside in Wake Forest, right off State Hwy 98 and that is usually how we head into Durham. In fact on Friday we are planning to go to the Life and Science Museum. Ryan is up to 25mg of Atenolol, BID and that is all besides some DHA, Vit C for now...

:D Thanks so much for your reply. When will you be out this way again?
roxiemoxie4
 
Posts: 9
Joined: Sat Mar 17, 2012 8:42 pm

Re: Anyone in the VA or NC area?

Postby Elizabeth » Wed Mar 21, 2012 10:53 pm

Welcome, I'm sorry you are dealing with this...I can't imagine being a parent of an afflicted child...its been hard enough with me being the affected person. Anyway, I don't know anyone in your area, but I saw that you said your son is taking DHA. That would be concerning for me....it is possibly a blood thinner. Depends on the dose, but I personally would stay away from it and just try to consume a healthy diet. Supplements are very scary to me for many reasons, but making sure he's not consuming blood thinners is important, and can be tricky. Best wishes.
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Anyone in the VA or NC area?

Postby roxiemoxie4 » Thu Mar 22, 2012 1:30 am

Thank you Elizabeth for your reply ;)
And I did read that in an earlier post I the other day. I have added it to my list of questions that I have begun to compile because now having been with my big toe in the pond, I am able to grasp alot more and need to press, alot more for answers as well. I did find out of course that DUKE here has a very well respected NS group and they are only about 30 min away from me. I appreciate your reply, and thank you for your input. Will keep you updated. It is alot to take it and the mere concept of highschool alone scare me (thinking of all the stupid things I did myself). I am grateful and remind myself daily of that. <3
roxiemoxie4
 
Posts: 9
Joined: Sat Mar 17, 2012 8:42 pm

Re: Anyone in the VA or NC area?

Postby angelarowland » Thu Mar 06, 2014 9:42 pm

I'm in the western area of NC and would love to get together with others who have this. Mine was in the left temporal lobe and surgically removed 1 year ago but life is very different now. I'd just like to support someone else or have their support, as friends who've had a similar issue. Thanks!
angelarowland
 
Posts: 1
Joined: Thu Mar 06, 2014 9:18 pm

Re: Anyone in the VA or NC area?

Postby ProfoundlyNormal » Wed Aug 12, 2015 2:22 pm

I'm in Eastern Virginia. I'm sorry to hear about y'alls kids getting hit with this. I was diagnosed 18 mos ago and have been suffering symptoms of untold number of bleeds since 2012. I'm still trying to get a doctor with a modicum of experience. But, alas, we're military and that makes our world very small and ... dumb. Anyhow, if there's anyone out there that's successfully navigated Tricare to get a doctor who isn't using WebMD :o to treat your bleeds, please let me know.
ProfoundlyNormal
 
Posts: 2
Joined: Wed Aug 12, 2015 2:07 pm

Re: Anyone in the VA or NC area?

Postby Elizabeth » Thu Aug 13, 2015 1:15 am

Profoundly normal,
I don't know anyone local to you, but u can consult with multiple experts from afar.. You mail in ur stuff and they will call u. As far as a "small and dumb" group of choices....sadly its pretty much a "large and dumb" group for the rest of us. Sigh! Hang in there and keep being ur own advocate!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
Moderator
 
Posts: 1644
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Anyone in the VA or NC area?

Postby Connie Lee » Mon Aug 17, 2015 7:52 pm

Profoundly Normal - please message me when you have a chance. We have a decent size group in the Hampton Roads area with some retired military included. Angioma Alliance is based in Norfolk, and we'd love to have you and your family at our next event.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
User avatar
Connie Lee
Founder, Angioma Alliance
 
Posts: 440
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia


Return to Local Get-Togethers

Who is online

Users browsing this forum: No registered users and 2 guests

cron