Hi Guys & Gals
I picked up my films from my MRI-MRA and Angiogram Today and I don't think they look to good :'( Where my PC Dr. had me see a Neurosurgon because he heard a rattling in the left side of my neck so I had all three of those tests run on Oct 30 th (in which case I fainted--scarriest fainting spell I'VE Ever Had !!!!!!!) Angiogram done on the 31 st.
MRA on my neck show I have almost No Blood Flow and Angiogram shows ( The left posterior ceberal artery is completely or near completely occluded at the level of the terminus of the P1 segement )  I don't understand all this Dr. talk But I can read between the lines that I have narrowed alot since my 2006 tests,,,,,,It does say something to the effect of--it is possible to consider an occipital conduitt with the musle flap however there are already spontaneous dural-to-pial colleratlerals from both occipital artries to the brain through the transdiplonic branches and these could certainly be jeopardized by mobilizing a muscal flap........ :-/ I see my Primary Care Dr. tomorrow and am gonna show him my test results and then make an appointment with my suron to go over it with him :-/
I'm not real happy with the surgon that my PC Dr. sent me to But he done the angiogram and is in the same office as the Dr. that done my 2nd surgery (I liked him)
A New MMer that I have been talking to went to that same Dr. and was told he had Moyamoya and there was nothing they could do for him and he found moyamoya.com and called Shands and they done his surgery in Aug. So I don't have alot of faith in him...... :-X New Years Eve. will be 10 years since my 1st. surgery and I have never been afraid of this diease But I am getting worried with all that keeps happing to me........So Many Falls So Many Broken Bones,,,,,,I am just getting so tired of things happing to me, I feel like it's almost my time, I know I have had so many angels that Have Saved My Life and like a cat I've already had most of my 9 lives used up..... :-?

ELAINE  . I am praying for you my friend .   I wish you the best of luck . please let me know what the dr. says .    TAMMY :)

Hang in there Elaine.  If you aren't happy with your referral, ask for another one!  Keep fighting for yourself!  Sometimes it pays off.  May the good Lord keep you strong!
Michele

Elaine,

You are a strong women and have overcome great obstacles and I believe you will conquer this recent event. Don't let this get you down. You keep fighting and know that we are here for you.

I agree with Michele. If you are not satisfied with your doctor, find another.

Get your quesstions answered, understand your options, and keep us posted.

Stay strong and keep the faith.

Hugs,

Lore      

Well here I go AGAIN :-/ just fell face first and hit my forhead on the floor  :(  I AM SO sick and tired of falling (and hitting my head) GOD IS WATCHING ME  ;) If you guys only knew how many times I have fallen You'd Never Believe Me (Gods Truth) 4 " steel rod in my neck (10 stitches and 5 days in hospital) Broke my left foot 3 times toe twice, right foot 2 years ago and left ankle almost 2 years ago (plate put in and 1 1/2 months in nursing home.......almost 4 years ago 10 staples in back of my head, concusion (2 days later fell backwards hit same spot had a stroke) and that isn't even half the falls , I just didn't break anything or need stitches or staples, I know my husband use to get SOoooo Mad when I would fall (but there wasn't anything he could do-----I just don't have any balance, and fall ALOT,,,,,,,,Now I'm not getting any younger and these bones aren't as strong as they use to be......... :(


Well good news is when I went to the Dr. today I've lost 20 lbs. and that made him happy since I am a dieabitic , high cholestrol , high blood pressure  :D so he was glad to see me losing weight ;)

Elaine,
My son, Robert would fell down all of the time.  5or 6 times a week he'd fall up stairs or down or somtimes just walking accross room.  Then he fell down my basement stairs, luckly he didn't hurt bad.  At he's last doctor appointment I told the doctor of all the falling.  He put Robert in physical therapy, he went for 4 months before insurance cut him off.  You wouldn't belive how much that helped him.  He had tried to ride a bike for years, but couldn't do it and now he's learning slowly.

Julie and Robert :o

Elaine, I am praying for you! Hope To see u soon! I miss you! Hope to see u soon!

Kate

Elaine -

You are on my heart and in our prayers.  I know how much hardship you have already endured, but you are a strong and beautiful lady!  Hang in there and keep your hope up.  I too agree - ask for other opinions from other doctors if you don't get what you need for the one you are seeing now.  Let us know what he says.

Love and lots of hugs,

Cass, Jon, and Kate in Texas

[smiley=engel017.gif]Your angel is watching over you.

Robert & Julia
In 2003 when I had the 10 staples in the back of my head then fell and hit the same spot (it made the partical paralize that I have had since 1997 that onlyeffected my leg from the knee down :(made it from mu hip down :'() I did take several months of physcial thearphy for balance and it did help However I Have fallen dozens of times since then and the theaphry hasn't helped much now.....
I actually fell  forwardward last night and hit my forehead on the floor ( Thank-God for carpet ) This head has hit concreat garage floor, wood cabinets, woodfloors............. :'(
OH Well Life Goes On  :D

THANKS EVERYONE FOR CARING  ;)
It Means Alot,,,,,,,,,,,,,Elaine

Elaine, you are in our thoughts and prayers.

Tricia and Amanda

Just a thought here!  I know when a person has balance problems or equalibrium problems, dr.'s often check your ears and many times discover an ear infection.  Any chance the moyamoya is somehow affecting your ears?  Not enough blood flow to the ear drum or something???  Like I said, just a thouht.  I think I would ask a doctor if this is possible.  Hang in there Elaine.  Thanks for the e-mails!  

Elaine, I'm so so sorry your having these difficulties.Does you Dr. know about all of these falls????? Someone mentioned ear probles causing balance problems,Thyroid issues can cause balance problems also.I hope you can get this under control very soon! Many many prayers and (((HUGS))))
Mary Grace

Just wanted to let you know that I am thinking about you and stay strong friend!

Love~ Christy

Hi Elaine,

I'm your neighbor just north of Sanford, Fl.  My daughter Julie saw the doctors at Shands and they are very good.  There is one neurosurgeon who has performed various sta-mca's.  Julie went out to Stanford for her surgery, but if you need stay withing Florida, Shands would be my only choice.

Hope you are doing better.  We will keep you in our thoughts and prayers.

Cheri
aka Julies Mom

Cheri, who is Jules seeing at Shands?  Destin is seeing Dr. Lewis.  She has her surgery with him on Dec. 22nd.  He was recommended by a friend of my daughter-in-law.  So far we are very happy with him and Shands.  I'm fairly new to this group so I don't know how old Julie is.  My daughter is 14.

Elaine, I'm so sorry you have all difficulty, I've fall sometime in the pass due to MM effect. I know how you feel, want you to know you in my heart, and I'll pray for you everyday, hang in there, you already go through all of those you will beat anything in your way  [smiley=bigguns.gif].
Big hug from me
Kieu

OH ELAINE! I am so sorry to hear of all your troubles. You were one of my first dear friends here on the board back in July 06 when I got my dx. You had told me your MM story and how your 1st surgery was on New Year's Eve! (a happy New Year's present...lol) and you told me about the 2006 reunion in Orlando and how you were the one that contacted the Compassion Dept at Disney. You did so much to make others happy. Of course, you were inviting me to Orlando, but I was planning for my upcoming surgeries and it wasn't meant to be.

I consider you a dear friend, even if it in this cyberspace world. I wish I could be closer to give you a hug or a warm banana bread and some coffee.

We all know ourselves better than anyone, and I do believe deep down we "do" sense our mortality when a heightened awareness comes in to play. It is a gift of sorts, so that we can make our peace and start getting our business in order. Luckily, no one really knows the exact plan....so we just "keep on plugging", and those of us that feel our mortality do so with a different outlook on things. I do hope that you will be laughing and smiling here with us for quite a while....and hopefully that WILL be the case.....but at least knowing we are ALL temporary in this life.....keeps us balanced and focus's our values towards the real goal of this world.....which is, to succeed in gaining the next one.

Keep us (and me) posted, I am a bit worried and would feel a lot better, hearing you are doing Ok.

hugs....Diane : )

8-) HELLO  EVERYONE I JUST WANT TO TELL YOU ALL-------I SAW DR.LEWIS  AT SHANDS  (WONDERFUL DR.) He accually spend about an hour with me  (gat a CT Angio-----with a new machine-----only 2 in the US)  ;)
AND HE SAID I WAS BLOCKED IN THE LEFT INTERNAL CARIOD ARTERY  BUT MY EXTERNAL ONE WAS PLUMP AND SUPLLING THE INSIDE OF MY BRAIN AND THAT I HAVE GOOD FLOW  ;) ;)
:o
I  MISS ALL OF YOU GUYS AND CAN'T WAIT TILL THE NEXT REUNION


LOVE YOU ALL,,,,,,,,Elaine

Hi Elaine,  Dr Lewis is awsome isn't he?  He did Destin's surgery in December and she just loves him.  Don't know what we'll do if he ever moves...Destin said she doesn't want anyone else to touch her brain.  Looks like there are enough of us that we need to have a Florida mini reunion this spring/summer.

I am so glad to hear you got some good news Elaine!  You deserved some!  You are one tough cookie [smiley=thumbsup.gif]
Michele

Elaine -

That is really great news !!  You are on my heart and in our prayers daily.

Lots of love and hugs,

Cass, Jon and Kate in Texas

Hi Elaine,
I'm so glad to hear that you're doing well. Take good care of yourself.
Kim

Hey Elaine,

Hang in there girl! Dr. Lewis is one of the best. He did my second surgery and I absolutely loved the amount of time and attention he gave. I know someone has mentioned our Florida "reunion" so please come! I for one, can't wait to start planning :D

When it comes to dealing with moyamoya I've found that I have a choice to make. I can do one of two things: give up and cry or do something about it! You have so many people praying for you and that are here to support you...keep at it.

Jesenia

P.S. In high school I was voted, "Most likely to fall while sitting down." I know where you're coming from  ;)

Its great news!!!! I was having some problems aswelll, but everything has been good so far, I am going to the nuerosurgen on wednesday to reveiw the MRI/MRA. Hope that goes well. I have been having headaches for a couple of months, so it could go either ways!  Hope U and everyone else stays healthy!!! Maybe this summer we could come up and visit!!! U R in my prayers everyday!!! Love YA with alll my heart!!! Hope 2 c u soon!!!

Love, Kate