I am new to this message board, but I have read several posts. I am so glad I have found a "family" that understands. To begin with, I'll introduce myself. My name is Danette and I have a son with MM, who will turn 6 next Monday, the 24th. He was born with a basal encephalocele, and also has septo-optic dysplasia. He is visually impaired (NLP in right eye, cataracts and iris cysts in his left eye). He has hypopituitarism..... and lights up a room when he enters in.  He was diagnosed with MM on March 3 after an arteriogram. He had surgery on April 5 on his right side. His dx is bilateral, but his temporal arteries are not usable for surgery due to his encephalocele resection, so they only did one side...and will do another arteriogram in a few months to see if collaterals are growing in the procedure they did. ANYWAY.......

I have a question.... How long did it take for your children's skull to close back? (We had surgery on April 5th.) I know it will take a while to fully close, but Austin gets a pocket of spinal fluid buildup on the side of his head. It just does it from time to time.
If he gets hot, it will do it. Our neuro told us when he runs a fever, his spinal fluid will increase, but it also does it when he is not running a fever. I have called the Dr several times, and they tell me it is normal.
Well, I had to go get Austin from school this morning because it got really big, and the swelling scares his teachers. I just do not know what to do. Any suggestions? It doesn't seem to bother him when it
happens, it just looks funny with an egg on his "zig zag".

Thanks,
Danette

Hi Danette---welcome to the MM family---what type of surgery did your son have?  You indicated that the surgeons could not use the temporal artery?  Did he have STA MCA bypass or EDAS using an artery from another part of his body?  It is absolutely amazing the resilience that children have-----your boy has a lump on his head the size of an egg with a zigzag in it (reminiscent of Harry Potter?????) and he is handling it just fine......what a trooper!!!!!  Peace to you and your amazing boy....PatM  

P.S.  I do not have children with moyamoya---I am the one blessed with the condition and will have 2nd EDAS surgery at NY Presbyterian on June 4th.....You and your family are in my thoughts and prayers.......

Hi Danette,

I'm so sorry you had to find us, but I'm glad we're able to be here for you!  I have a couple of quesitons about your post too...

You mentioned "collaterals" in your post so I assume Austin had the EDAS, or EMS type surgery?  I also assume his scar is somewhere in the vacinity of his temporal area?  If the temporal arteries weren't available because of one of his other conditions, where did they get the arteries from?

I'm sorry, I'm not familiar with the other conditions Austin suffers from so I'm at a little bit of a loss here.

Regardless, I'm not aware of any other people having the swelling problems Austin is having more than a month after surgery.  It just doesn't sound right.

Do you mind if I ask where Austin had his surgery done and what surgeon did the surgery?

I might suggest you contact a moyamoya specialist on the east coast, Dr. Scott in Boston, for a second opinion and any questions with pediatric moyamoya and the EDAS, EMS type surgeries.  His link is located on the links page on the menu bar at the top of the page.

Let us know how it goes and keep in touch!

-DJ

Thank you very much for the responses. It is so nice to talk to other MMers.

To answer some questions...

The arteriogram showed his temporal arteries were there, and usable. But when the dr opened him up, the arteries were "lost" in scar tissue. Then my dr immediately called Dr. Scott. Our doc's name is Dr. Troup, and he has worked with Dr. Scott, and knows him very well. Troup consulted with Dr. Scott on my son before surgery, and when Troup could not do the pial synangiosis, he called Dr Scott to see what to do.  We had surgery in Macon, GA. Troup did the EMS procedure. In the EMS operation, the temporalis muscle, which is in the temple region of the forehead, is dissected and through an opening in the skull placed onto the surface of the brain. He placed the muscle on his brain, and we are hoping collaterals will grow from that. Since this was not the procedure we were trying for, Dr. Scott recommended not to do the other side at that time. Doppler would not even pick up a temporal artery on the left side, even though the arteriogram showed a faint one. Dr. Scott told Troup if the doppler did not pick it up, then there was not adequate blood flow to try the pial procedure.
  We go back to see Troup on the 28th, and we will then schedule the next arteriogram. I am hoping collaterals are growing, because we do not know what to do if they are not. Austin complains of his legs hurting, so his dr has come to the conclusion he is having TIAs.
To explain the "zigzag", Austin's scar is not a straight line. When he had his encephalocele resection, he had an ear to ear incision in a zig-zag pattern. The zigzag does not pull as much as a straight line, and his hair grows back better. Since he already had a scar, Troup just went back in the same site, and did the MM procedure.


Danette

Hi Danette -   As DJ said, I'm sorry you have need for us, but we are happy we can help you.  I had my surgeries with Dr. Scott at the beginning of the year (I'm 29 now).  The temporal artery on my left side wasn't available to use either due to TMJ surgery I had when I was in high school.  He basically turned my jaw muscle inside out and used the arteries from there.  However, I haven't experienced the effects that you son has had.  Good luck and please keep us posted.  Thanks!

-shari  

HI DAnette----thanks for the clarification........You, your son, and your family are in our thoughts and prayers.....keep us posted on his condition....God Bless you......

Thought for the day:  Faith is a muscle that grows stronger the more we use it......keep the faith.....keep us posted...Peace be with you. PatM