Click this link to read a post I like on the moyamoya.com message board...

JennyG

New Poster

Offline

I'm 19 & Have MMD, and
Rocking Every Minute!

Posts: 21
Gender: female

Does living with MMD get better?
May 17^th, 2011 at 2:37pm

Hello, I am Jenny; I am 18 years old and was diagnosed with MMD when I was 16. I have been hospitalized countless times and have had 2 strokes. I am currently going through blood stealing, which is the left side of my brain is stealing blood from other parts because it needed more, and I am experiencing dizziness, fatigue, stuttering, weakness (to the point of seeming like a sort of paralysis), and more that I cannot remember because of my memory, Grin

. I have always kept a positive outlook on life; with something like MMD you need to be positive because there is so much sadness. I have so many plans, going to college, snowboarding, kayaking, etc. and the thing that worries me is that it is unpredictable. I am happy that I found this site because my friends do not know what I'm going through, my family worries and tries to relate but do not know how it is. Does it get better after several years, or will I be planning what I can do for the future in the future?
Thank you all that reply.
(I know it differs with everyone but knowing that it is better as years go on will put a smile on my face)

Back to top

Wearing A Red Jacket In A World Of Black And White! And They Say 'Normalcy' Is My Middle Name.

IP Logged

Click Here to visit the Moyamoya.com Facebook page!

Becky

Old-Time Poster

Offline

Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Does living with MMD get better?
Reply #1 - May 17^th, 2011 at 4:52pm

Jenny,
Welcome to the family. What kind of surgery did you have or have you not had a surgery? Are you seeing a MMD specialist because I am concerned on your symptoms sound like your Neurologist may not be exactly what you need. The Blood Stealing should not happen because the surgery should have fixed the blood supply to the MMD area and your brain should not be starved. I would get a second opinion on your treatment.

In my case I was 22 when I was misdiagnosed I was finally diagnosed and had a STA-MCA and EMS surgeries when I was 23. I currently work as an Engineering Aid full time (40+ hours a week). I am currently going back to school to finish my Bachelors in Electrical Engineering part time (1-2 classes at a time). My surgery has done wonders for me, but the EMS surgery left me with a permanent soft spot so I have to ware a helmet for the extreme things like skiing, motorcycling, ect. I can no longer able to Sky dive or SCUBA dive but snorkeling is fine and Roller coasters are ok too. I am married and we plan on kids after i am done with school. I have been okayed to have a cocktail if desired but to lesson to my body about how many to have. When I get tiered my friends and Husband have a code word that I need to leave the party now so I can discretely leave before I get to crabby. I have been able to start my Fridays at 5:30am got to work come home for a 2hour power nap then party until 4am. I thank it all to having the surgery and at minimum a year of recovery not saying I didn't try to push the boundaries before that but I always wound up with a migraine and in bed.

Please get a second opinion if you have not had a surgery. I hope this helps.
Becky

Back to top

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

IP Logged

JennyG

New Poster

Offline

I'm 19 & Have MMD, and
Rocking Every Minute!

Posts: 21
Gender: female

Re: Does living with MMD get better?
Reply #2 - May 17^th, 2011 at 6:58pm

I have had the EDAS procedure; Dr. Iskandar learned a new technique to do multiple openings to increase the chance that they would not have to repeat the surgery. I had my surgery done at UW-Madison Children’s hospital. Compared to the symptoms I had before my surgery, the blood stealing seems minor. I am happy that normalcy can be in my vocabulary now.
Smiley

Back to top

Wearing A Red Jacket In A World Of Black And White! And They Say 'Normalcy' Is My Middle Name.

IP Logged

Becky

Old-Time Poster

Offline

Stroke10/03, Diagnosed6/04,
Unilateral Surgery9/04

Posts: 532
Minneapolis, USA, usa, 303, 84, MN, Minnesota
Gender: female

Re: Does living with MMD get better?
Reply #3 - May 18^th, 2011 at 8:06am

Jenny,
I am happy to hear you had a surgery. I still say I am in recovery and it is going on my 7th year after surgery because the more time goes by the better I feel. My migraines are far and few vs one almost every day. My mind is able to concentrate more with my grades going from low Cs to A+s. You will get there. Don't hesitate to ask questions there is a fountain of knowledge here.
Keep on smiling,
Becky

Back to top

What doesn't kill us, makes us stronger. And sometimes leaves a cool looking scar. STA-MCA bypass and EMS Surgeries done at same time at the Mayo clinic

IP Logged

pamR

Junior Poster

Offline

mom of 15 yr old twins,
one with MM

Posts: 62
Sellersville, PA
Gender: female

Re: Does living with MMD get better?
Reply #4 - May 19^th, 2011 at 9:42am

Hi Jenny. I am so sorry you are dealing with all those symptoms. My daughter Courtney has MM too. You guys should try to talk. She is 15 and had surgery almost 2 years ago. Living with this disease seems to be a diffrent journey for everyone. The important thing is you don't give up on those awesome dreams of yours. I try to tell Courtney the same thing, but sometimes it is hard for her to believe she can be so called normal". Hang in there!! Do you take a baby aspirin daily and drink LOTS of water?
Pam

Back to top

IP Logged

JennyG

New Poster

Offline

I'm 19 & Have MMD, and
Rocking Every Minute!

Posts: 21
Gender: female

Re: Does living with MMD get better?
Reply #5 - May 19^th, 2011 at 11:08am

Hello pamR,
I would love to talk to someone around my age going through the same things. My friends dont understand and when I get breaks because of all the stuff I've been through they think it is unfair. I take 2 baby asprins a day and trentol for my MMD. I drink alot of water, I try to drink at least 100 ounces a day. Cheesy

I am trying to live in a sort of normalcy, excited for the Philadelphia thing. Can't wait to meet others that know how it is. Smiley

Back to top

Wearing A Red Jacket In A World Of Black And White! And They Say 'Normalcy' Is My Middle Name.

IP Logged

pamR Junior Poster Offline mom of 15 yr old twins, one with MM Posts: 62 Sellersville, PA Gender:	Re: Does living with MMD get better? Reply #6 - May 19^th, 2011 at 11:51am REALLY glad to hear you will be in Philly. We live an hour from the city and can't wait! I have to go to work soon, but I will tell Courtney to get on here when she gets home from school today. She could use someone to talk to too!! She gets home around 3. Hopefully you guys can talk today! Pam
Back to top	IP Logged

hrsridermom

Senior Poster

Offline

mother of 19 yr old daughter
with MMD

Posts: 292
Tampa, USA, FL, Florida
Gender: female

Re: Does living with MMD get better?
Reply #7 - May 21^st, 2011 at 9:17am

Hi Jenny. My daughter and I plan to be there (inPhilly) as well. Destin is 17 and knows just how you feel about the friends not understanding. A few are finally getting it as far as the breaks and missed school days and some just think she's a slacker (she's an honor roll student) but they don't see how she works to make up for her missed time in school. Sounds like you, Courtney and Destin will have a lot to talk about. she has a friend here in Tampa that is a year older and had her surgery a year before she did. It has been a good thing for them to get together and talk. See you soon.

Back to top

Destin's mom

IP Logged

JennyG New Poster Offline I'm 19 & Have MMD, and Rocking Every Minute! Posts: 21 Gender:	Re: Does living with MMD get better? Reply #8 - May 21^st, 2011 at 12:18pm I cant wait to see and talk to Destin, I wish june 16th to come sooner.
Back to top	Wearing A Red Jacket In A World Of Black And White! And They Say 'Normalcy' Is My Middle Name. IP Logged

Click Here to visit the Moyamoya.com Facebook page!

KTiller

Senior Poster

Offline

Posts: 355
Freeland, USA, usa, 51, 28, WA, Washington
Gender: female

Re: Does living with MMD get better?
Reply #9 - May 24^th, 2011 at 5:21pm

Hi Jenny,
Sorry you are having troubles. I was wondering what medications your doctors have prescribed for you. I learned recently that some can actually promote the "stealing" effect that your described-Plavix is one of these. I hope your meeting others in your age group at the Philadelphia reunion will be helpful. I returned last week from my 3 1/2 year checkup after bilateral STA/MCA surgeries in Stanford, CA. Receiving a pass on this milestone has been a tremendous relief.
Kim

Back to top

IP Logged

JennyG New Poster Offline I'm 19 & Have MMD, and Rocking Every Minute! Posts: 21 Gender:	Re: Does living with MMD get better? Reply #10 - May 24^th, 2011 at 5:26pm I was prescribed 2 baby aspirins and 1 trentol twice a day.
Back to top	Wearing A Red Jacket In A World Of Black And White! And They Say 'Normalcy' Is My Middle Name. IP Logged

twinsmom Experienced Poster Offline 16 year old twins with MM Posts: 128 hollis, USA, NH, New_Hampshire Gender:	Re: Does living with MMD get better? Reply #11 - Jun 22^nd, 2011 at 8:46pm Dear Jenny, I wish I had seen this before Philly, but so glad you got to meet my girls there! We are so blessed to have met you, and I hope you will keep in touch!! Stay strong, my friend!! XOXO, Kristen
Back to top	"Come to the edge." "We can't. We're afraid." "Come to the edge." "We can't. We will fall!" "Come to the edge." And they came. And he pushed them. And they flew. by Guillaume Apollinaire IP Logged

	Welcome, Guest. Please Login or Register
	NEW search box below... Search Moyamoya.com with Google!