:) Hi everyone.  My brother is having his surgery next month. SInce my sister has MM, and now my brother,,, then my other siblings have gone to their docs. One of them has already had an MRI and a MRA done. His doc ordered it.  The other one is also having these tests done next week. Neither has the same doc.  But I thought that these were not able to tell if you really had MM. I am not sure if I am wrong on this or not. Does someone know?  Also,,, my sister I care for has something new going on.  First,, keep in mind that she also has cervical spinal stenois.  She is habving severe back pain. Not really  down her spine,, but all over. And also in her lower sides of her stomach.  Has anyone ever had this, maybe relating to the MM. Possiblely the brain sending the wrong signals to these areas? I assumed it was from her stenois.  Doctor won't give any answers, because she is a hospice patient. Morphine isn't working on this pain. Have done mortin,, cold packs,, rubbing and muscle relaxants. None have helped. I realize no one has dealt with the life ending process of MM, over a long period of time. But,,, I am taking a shot in the dark here for an answer. Thanks to all MJS

Hi MJS:
My 15 year old daughter was diagnosed in March 2000, the moyamoya showed up on a MRI scan. When she has MRI's now they use a contrast to make the scan clearer. We were told that an angiogram is the only test that shows the clearest pictures of moyamoya but they don't like to do these as often because of the risk. I wish you and your family all the best.
Tricia

Hello MJS

I am not sure of protocol,but my M.D. did it this way.

First I a ultrasound of corotid arterys,They found Stenosis.After that they did a MRA and found more evidence.After that they performed av Angiogram and sent them to a vascular surgeon.He than sent them to a neurosurgeon, that performed a SPECT or PET scan to get afinding on ceberal blood flow.
The vascular surgeon noticed the moyamoya vessels

Hope that helps Kevin.

P.S DJ has a site on message board that outlines procedure.

Hi MJS,
I am sorry to hear about the pain that your sister is in, she is truly blessed to have such a loving and caring sister like you, I wish I could help answer your question about the pain but I have no idea, I hope the Doctors will soon pin point the problem for you.  As far as diagnosing MM, the radiologist that read my MRI was the first to suggest possible MM, then my neurologist decided to do the angio to confirm this diagnoses.  I hope this helps some.
Hugs
Kathleen

Yes,,, thank youall so much for the info. It has helped. I feel more at ease now with the findings for my siblings. I myself cannot have any tests, as I have no insurance. Staying home,being a full time care giver doesn't have benefits like a work place!! LOL  I will make many calls Monday too see what I can do for my sister. But thanks so much for trying and caring... MJS

Hi MJS-
I had an MRI and MRA and although they did not confirm MM, they definitely showed a problem and led us to an angiogram and SPECT scan.  The doctors I work for (50 ER doctors) have told me they are now more alert in looking for MM and consider an MRA to be the ideal first step.  I am thinking of your entire family during this tough time!  Hang in there!  You are in my prayers!
Chelsie

Dear MJS,

My daughter Tara's first MRI showed 2 (very old) small strokes.  That led to a contrast MRI, followed by a MRA.  Her neurologist made the diagnosis based on the MRA.

I'm so glad to hear your brother moved quickly and is getting in for surgery, but am sorry to hear your sister is in so much pain.  It's hard to believe that there is no relief with the morphine - I thought it would work on just about anything.  Wish I could offer a suggestion, but am not able to.  My prayers are with you all - for your sister to be comfortable, for your brother's successful surgery and subsequent recovery, and for you to keep having strength to continue being the wonderful sister you've been.  

Take care, and keep us posted as you can, o.k.?

[smiley=hug.gif], Jill    

:( Well, I guess I will post this here.sense in making another post.  I sit here in my silent house. Everyone has gone to work and school. My sister, Bonnie, the one with Downs, has taken a turn for the worst. Here is the story, I will try to make it short.  She has been having the pains in her back and lower abdamon. The morphin didn't help it. Well, Monday night, we found out what the pain was about,,, still not why though. Her whole body was in severe pain. For two and a hale hours,, she was racked with body cramps. You could actually see it start in her shoulders and move down her body to her ankles. Her body was completely rigid. The only thing that we could move were her toes and head. For the women,, it looked like labor pains,, the tighenting , then the release. Every 60 seconds. We tried everything we had here. She was in TERRIBLE PAIN!!!!!! It is the worst thing I have ever seen in my life. Finally, we got her comfortable. BUt then she had a temp shoot up to 103. Got meds in her for that. She finally went to sleep. Had been in contact with Hospice the whole time. At 2am she was moaning in severe pain again. But also in a drug induced sleep. At least that is what we figured. At that time, I called hospice again,,, at 4am there was finally a nurse here. Had to give rectal meds,, she could not swallow.  Morning time,, not able to get her too wake. When she did,,, she still was not able to open eyes,,, only moan with pain. Nurse arrives,,, we change meds,,,, patches and rectal. Nurse witnessed the body cramps. She is amazed!!!  Has never seen anything like it. By 4pm  she is completely out. Maybe a coma,,, don't know. Put in cathater,,, barely any output. Is on oxygen. No responses from her in any way now. Try to sleep,,, she has a rattle now on her left side (chest). Temp is still up, but holding at 99.9 Her normal temp is 97. Hands and feet have no pulse,,,,. But at least her body is relaxed. So I sit here, in the quiet house. Will not fix her breakfast today. Will not dress her, or watch Mary Poppins  with her. It is just her body and I for now. I guess God is maybe giving me a quiet time to try to adjust to saying goodbye. And then again,,, maybe she will come back for a while longer. Will have to wait and see. Hug all your loved ones. I am so happy to be able to say my brother will have his surgery for this MM. But I am also afraid this will scare him more than he needs. But we are a strong people. Come from hard Stock. LOL Will updata as I can. Sincerely MJS

Please know that your sister and your family are in our prayers.  Please believe in Him

Janice

I believe you are right MJS, this id your quiet time to say your goodbyes and to help begin closure.  You will be in our prayers and I fear that your next post will bring bad news as a terrible process has begun with your sister.  Say your goodbyes and remember all the good times and the smile as best you can during this hard time. :'(

MJS,
Your whole family is in my prayers.

Although you are going through a terrible time, maybe seeing this will make your brother realize just how important surgery is. He is getting a second chance your sister missed, by her late diagnosis.

Blessed Be,
Rena

Words cannot express the sorrow I feel for you and your family.  God certainly knew what he was doing when he placed your sister with your family, I am absolutely sure that her life was filled with happiness and love.  I truly am sorry for the pain you and your sister are going through right now in the process of her leaving this world,,,Take this time as you said and say your personal goodbyes, it is never easy even when you think you are prepared for the end, but rest assured that God has your family in his hands and my prayers are with you right now, hoping that it will bring a small amount of comfort your way.
Tight Hug [smiley=hug.gif],
Kathleen

Dear MJS,

The story of your life with Bonnie is so amazing.  As you tell all of us of the physical and emotional pain,  you're still able to throw in a "LOL".  What an incredible person you are!  I am in tears as I picture you sitting in your house reflecting over lifetimes and saying your goodbyes.  It's so hard to understand why things like this must be endured, and I continue to admire your strength.  You've profoundly affected not only your immediate family, but also those of us here on the MM board.  

Words seem so weak at a time like this, but know that we're with you in thought and prayer.

Big [smiley=hug.gif], Jill        

Dear MJS,

My thoughts and prayers are with you & your family as you go through this time of change and well deserved peace for your beloved sister.  Sincerely, deb

MJS,

So sorry to read your update. :'( Still I believe as you say that your sister is staying for a while longer to say a silent goodbye and give you the chance to do the same. I have been following all your posts about your sister Bonnie and have been amazed over all the love and care between you two.  
Sending you thoughts and hugs,

Annica

 Thank you for sharing with us.As always you and Bonnie are in my prayers.I am so sorry for all that you both are going through.You are two amazing people with strength and faith that fill my heart. your posts hit a very special place in my heart,my daughter alos ahs down syndrome.
Mary Grace

MJS,

You are an incredible woman. Your sister is so blessed by you. As you are going through this time that seems unbearable, let Christ be your comfort.

As I was reading in my Bible I came across a verse and I thought of you:

"For as the sufferings of Christ abound in us, so our consolation also aboundeth by Christ."
II Corithians 1:5

Jesenia

:)Thank you all so much for your prayers. Believe it or not,,,, they have helped in so many ways.   As I said,,, as of the time she had the body cramps on Monday,,, she was unconsuch(sp!!!) after that. The next, when the nurse saw them, her meds were changed. That did help. But as the meds would wear down,,, you could see the signs of pain coming back. So more meds were given. She never woke up, but let me know when it was time for the meds. She would let out a strange sound, and it was LOUD! But then, meds would relieve it again. I know she was aware at times that I was there and helping her as best I could. Yesterday,, nurse comes by, tells me her body is shutting down. Tells me how, with cancer patients,, they will stay alive until whatever is keeping them here is done. The there is a "brain thing" that will cause the bodys temp to go up and down.  Then, when all was quiet and the patient was alone,, they would depart this world. I made a few calls to tell friends and family.  EVERYONE CAME!!!!!!!!!! I started to get upset,(I was also exausted at this time also),, but then I reliazed it.. All these people,, kids,,, noise,,, were commom for our home.  We have not had this for a long while. So I just let them all be. There were many tears,, and laughter. Many stories told. Her dog chasing the kids and barking at them. More tears,,, then goodbyes. Finally, all is quiet. I lay on my cot by her bed. My daughter would not leave. Her two little ones asleep on the couch. Remember, Bonnie is in a bed in our livingroom. My husband goes to bed. My daughter ( her name is Starr), kicks back in recliner. Watch tv for about ten minutes,, but we are worn out. Turn off tv.  Ten minutes later,,, :(  Bonnie lets out a fairly loud sigh. We jump to her side,,,and she is gone. Finally check her heart,,,, no sounds. Funny though. I thought I would fall to pieces. But I kissed her(probably a hundred times), as does Starr. I tell her I am proud of her for finding her way home. Of course, I had to hide in the bathroom when they came to take her, but my son came in to help also. As did my stepdaughter. She had what she needed. A normal day with family and friends coming and going. Then a quiet night. She left us at 11: 24pm on Thursday, Feb 17, 2005. YOur prayers helped bring about what was needed. And to help her find her way home. That is what she has wanted for a long time now,, but she thought I had to take her there. I am so proud of her. It was peaceful,,, and she looked so good. Her color was perfect. My honey is at home again. Thank you all so very much. I will keep you updated on my brothers surgery next month. I could not have done all this without all of you. You are wonderful people. Again,,,, Thank You,,,,,,,,,,,,,,Now, when I get through this,,, My new journey in life begins. And it will be better, for I have known her.                MJS

MJS,

What a special gift Bonnie has given you!....You will always cherish the wonderful memories caring for her.  You helped to die at home surrounded by all the things that she loved in her life....rather than in a sterile, formal setting in a hospital....a place she would not have felt the peace that you provided at home.  She passed surrounded by love and tenderness.

You and your family have been in my thoughts.  

Lora

Dear MJS,

Words are difficult to find right now, but what a poignant narration you've given of the end of Bonnie's life.  I'm so glad she's not in pain any longer, and the vision of her being surrounded by all of you - family, friends, even barking dogs is just wonderful.  It sounds like it was peaceful, like the end of a long day, and she just relaxed and went home.  I know that her life was a gift, but the gifts you gave her are also immeasurable.

Once your sadness subsides, I hope the joy you had in knowing her is what you, your family and friends are left with.  I didn't know her, and haven't met you, but I know God put you two together for a very special reason.  Her reward in heaven has started, and she'll wait for you to join her again someday.

We'll continue saying prayers for your family's strength, and especially for your brother's successful surgery.  I hope you stay with us, because you are an important part of our MM family!  You speak of the strength of our prayers for you, but we also get strength from your wonderful, selfless example.

(By the way, we know your sister's name and your daughter's name . . . I would love to know your first name someday! [smiley=confused.gif])  Peace be with you.

Many, many hugs,
Jill

 

MJS......you just described my father's last day too...janurary 24, 2005...there is nothing like saying good bye to someone that is so very special to us...as I type this tears just run down my face....am sending tight hugs to you, putting you and your family in my prayers.  ... and once again have to say what a WONDERFUL sister you have been to Bonnie. God Bless you, MJS ....CarasMOM.

MJS,

I wish I had the right words to express what's in my heart right now, but I can’t utter a single word that hasn’t already been said or felt by the others in our mm family any better than the way they've expressed it. But I do know that because I’ve known you and Bonnie through your posts…it’s helped make me a better person and has kept me focused on what's important in life. What a precious gift you've given me through all your pain and sorrow, I must thank you for that. God bless ya! I hope I don’t offend anyone by saying this, but I can only speak from my heart and my beliefs, and they are that, I truly believe Bonnie is now perfect, healthy and whole, and she’s smiling in Jesus arms right now, safely home.

My continued prayers for you, your brother and family.

God bless,
Mar

Dear MJS

Thank you for sharing Bonnie life with us.  We will never forget Bonnie and I am sure she is smiling down on you right now.   It took  me so long to read your post because the tears would not stop.  Thank you and God bless.

Jance    

MJS,
         I cannot even get out what I want to type. God Bless your whole family.
                 Nancy

MJS,
Here is a poem I wrote after my mom took her final step. It helped me and I hope it helps you.

Life’s Steps

Birth
The first of many steps our life holds

Toddler hood
Exploring what the earth has to offer within safety’s boundaries.

School age
First steps into the vast world.

Teenage
Discovery of what the world has for you.

Adulthood
Carving a step just for you.

Death
The final step we are aware of, yet is it the last?

Blessed Be,
Rena

MJS,
I too am having a difficult time expressing in words how deeply you have touched my life by opening up your life, the joys, sorrow and pain helping your sister return home.  I have three girls, my middle daughter has Down Syndrome, I had my other daughters read your posts and I told them that this is what I hope they will do for there sister, you have gave yourself selflessly to your sister and I am positive you have a special place in heaven next to your sister.  There is a Country song called "Don't laugh at me" and in the song it says "..in heaven we all will have perfect wings"  I like to picture Bonnie with her perfent wings now.  God Bless you and your family, and thank you for letting us into your life at such a personal time.  
You are in my thoughts and prayers,
Kathleen

I am sorry for your loss, but I am happy for your sister. She is at peace now. You are an amazing person to give yourself completely to the care of your sister, and now [smiley=twocents.gif] it is time for you to live, and she will live through you. You and your sister are an inspiration to us all.

I will keep you and your family in my prayers. Thank you for the gift of knowing Bonnie and yourself.Having a daughter with down syndrome, I know what a gift Bonnie has been to your family.My daughter is just 7, she has an older sister whom she teases every chance she gets and an older brother whom she adorses.I so hope they can stay as close and caring as your family.I'll be watching for updates on your brother.
Mary Grace