My daughter Amy had her first surgery yesterday and she still wont wake up. I am not sure what is going on but Stanford Hospital is right on it. They did stat CT scan and MRI last night when the left side of her body wasnt working and Amy doesnt follow commands well. We are from the midwest and here in CA alone. I feel so scared and alone here. Please Pray For Her! ....her momma

I'm so sorry she's having complications.Many many prayers for both of you.I know how scary it can be,I wish I could say something to help you not to feel so alone.Hopefully you can feel our support and prayers.((((HUGS)))) to you both.Keep us posted...
Mary Grace

I really feel the love and concerns from this website and am so thankful for it. Amy is in another angiogram because the special MRI, they called it, showed an infarct right side brain so that is why she cant move the left side. She really isnt communicating. Sometimes when i speak to her she may nod her head alittle. They are trying to figure out where the blockage on the right side is at and if they can fix it with this angiogram. The dr said she will not be able to have the right side done for now and Amy will be hospitalized a min. of 2 weeks here and maybe longer. I just feel devastated. Has this happened to anyone else that there? If so please tel your story. Thanks, Amys mom

Hi Christie,

I'm sorry to hear about Amy's set back.  The good news is Stanford is on it. Amy is in the best possible place at the moment.  Stanford has isolated the problem and Dr. Steinberg will decide the next steps. The fact you are getting some response from Amy is, IMO, a positive sign.

I can relate to what you are going through and feeling at the moment.  My brother was in bad shape when I got him to Stanford. We are from Ohio and really didn't know anyone except Jill. Who was a great help and support to us. Also, our social worker, Michael was a great help as well.

My brother had gone 4 years misdiagnosed.  He had a hemorrhage while at the hospital and Stanford got on it so fast that I didn't know what had happened. Dr. Steinberg came immediately and it was snap, snap and I had never seen so many medical personnel moving so quickly and methodically. My brother  survived his set back and is doing very well today. One would be hard pressed to know that he had two strokes, a dissected right upper internal carotid artery and a hemorrhage. Today, he can speak, walk and talk and has regained his abstract thinking ability.

Everyone is different and may or may not experience a setback. Tthere can be many different factors depending on the individual's current condition and health status, age, and a number of other things. When my brother was in bad shape, I had to keep reminding myself that he had gone 4 years misdiagnosed and had suffered such trauma and that he was at Stanford for life saving treatment and if anyone could help him it would be Dr. Steinberg and Stanford. It helped me to keep things in perspective and to stay focused. Obviously, it had not been for Dr. Steinberg and Stanford, my brother would not be here today. My brother was fortunate to be treated by the best of the best and in the nick of time.

I hope this helps ease some of your anxiety.  

Like Mary Grace mentioned, you are not alone.  You have your MM family and we are here to support you and we are here for you.

Stay strong, keep the faith and keep us posted on Amy's progress.

You and Amy are in my thoughts and prayers.

Hugs,

Lore  

 

Thank you so much for sharing your story. I will keep faith and take each day at a time. I do know she is in the best hands here. Dr Kahn is Dr Steinbergs fellow dr and she is wonderful. She has kept me posted on everything. She is so compassionate, i just dont know what i would do without her here. Jill has been wonderful too. I also met Steph and DJ. What a wonderful group of people in the MM site. thank you for your prayers,,,,,,,,Amys mom

Oh I will def pray for her, I am sorry to hear this happened, But i will pray day and night until i hear she is doing good again

I will keep Amy in my prayers.  I haven't been through what you are going through yet but I know it must be very scary.  My daughter has her surgery next month.  I have heard such wonderful things about Dr. Steinberg and know you are in great hands.  Please keep us all updated on Amy's progress and in the meantime don't forget to take care of yourself too.

I am so sorry to hear about the set back Amy had.  I will pray for her and you.  My son is set for surgery at U of C in Chicago next week.  
I know you are in the best of hands from all I have read and experienced with Dr Stienberg ( he gave me a second opinion on my son) and they seemed to be so together.  Please keep us updated. God Bless you and Amy
Linda

I'm so sorry to hear about the setbacks Amy is having.  Know you are in the best of hands and that God is watching over you both.  If anyone can bring her through this they can.  I will keep you both in my prayers.  Please keep us informed as to her progress.  You must take care of yourself so you will be there for her when she needs your care.

Love and Prayers,

Margaret

 I'm so sorry...I will certainly keep you and your daughter in my prayers.My daughter had similar complications after her first surgery.She was in a very unstable condition when she had her first surgery because she had a small stroke the day before. 4 days after her first surgery she had a small stroke on the left side of her brain and a major stroke on the right side.She was like an infant and spent a month in a rehab hospitalTthe great news is they did the other surgery a week later and she's had no strokes ever since, it's been six years and she's been healthy and happy.She has also made an amazing recovery.She's walking talking reading and writing.YOu are in the best place you can be with your daughter and I'm sure she's getting the best care she can get.I'm just so sorry your alone and scared.If you would like someone to tlak with let me know and I can leave my # here.((((HUGS))))))
Mary Grace

Hi Christie,
My friend had a stroke during her surgery, she lost her ability to speak and was paralyzed on one side for awhile. She was at Standford for six weeks. I met her last week, nine months post-surgery, she is absolutely perfect and very happy! You've made sure that Amy is getting the best care. I'm praying for her. She'll come through this.
Kim

Hi Christie,  you are in my prayers as well.  

Wow these stories are so inspiring to me and gives me hope. This morning Amy opened both eyes for a min and that she didnt do yesterday. With much coaching she has spoken a few words too. I am certain she understands what is going on, her body just doesnt cooperate. Many thanks to all of you for your prayers and concerns,,,,,,Amy's mom

Hi Christie,

It appears Amy is making progress. Small steps, big strides. Her body needs to repair itself and it will take time. Remember, the body's first instinct is to survive.

I too have great hope that Amy will pull through this. Amy has a lot of positives on her side in that she is at the best possible place, with the best possible care, and she is young. I also believe she is a fighter. I also believe she knows something has happened to her but simply may not be able to respond as well as you would hope at the moment.

Although my brother could not speak, and couldn't tell me anything, and in fact, at one point, didn't even know who I was, I felt he could hear me and I felt certain he knew something occured but didn't know what it was. He told me later, after he reagined his speech, that he knew he wasn't right and he remembers hearing Dr. Steinberg tellling him he was there and he was going to do CT scans and he was there to help him and to basically work with him.  That is all he remembers but I think it was the one thing that kept him fighting to recover because he knew Dr. Steinberg was right there with him and that made him comfortable and then he doesn't remember anything else as he became unresponsive. In retrospect, to me, the shut down is the body placing itself in a healing mode.

I have to tell you that the entire MM Stanford team of doctors and nurses worked tirelessly to get my brother to the point I could fly him home and they did an excellent job. To this day, I am in awe of their compassion and their abilities when it comes to MM and the ups and downs. Medicine is not an exact science and therefore, not a perfect science.  For Stanford to have the success rate they do, is unheard of in medicine much less dealing with a rare disease like MM.

My brother soon learned to communicate by pointing and using a lot of hand language. It got to the point, I joked about my perfection at playing the game Charades. Like I mentioned earlier, he regained his speech with therapy. It was actually faster than I had expected or even imagined. but again, everyone is different. My brother was determined to survive and not let MM rule his life. He is much older than Amy as he was in his forties at the time. The point I'm trying to make is to be patient and let Amy heal and take it from there and remember, your MM family is here to support you through this.  

I know how rough this journey can be, and the many possible ups and downs, and it is easier said than done, but hang in there. Any improvement, no matter how small, is progress.

Stay positive and keep the faith and please keep us posted on Amy's progress.

Hugs,

Lore