I have two queries:

1) What happens when you have a TIA? Are you conscious? Do you shake? Do your eyes roll back? Is it like having a fit? Etc, etc. I'm asking because I need to be able to recognise it if Luca has one.

2) There is a new member on here who's neurosurgeon is suggesting having a stent put into the constricted artery. Has anyone been treated like this for moyamoya succesfully?

Have a great day everyone

Mark (Luca's Dad)

Mark~

I have followed your saga from the beginning and absolutely adore little Luca! and wish the very best for you all.

The TIA I had was that my hand lost it's grip momentarily. I ignored it (stupidly) as it was such a quick and odd thing and I was in denial. Then It happened again and I dropped a coffee cup. So my husband Jack called Stanford and we trotted on down there.

TIA's can manifest in many ways. The response above was a good one.

Hope everything goes well and give Luca a hug from me!

Linda (LA)
9 year survivor of mm surgery!

Hi Mark,
I too have followed your saga with getting help for your little one - what a sweet heart. I'm praying that Luca has nothing but smooth waters from here on.
When I have a TIA it usually manifests as numbness in my thumb and index finger followed by numbness in my upper lip same side. Prior to surgery it also affected my vision, though that seems to stump even the neurologists. I think the symptoms vary widely depending upon what part of the brain is being deprived of oxygen and nutrients. It can be subtle and of short duration so may not be something to which Luca would call your attention.
I read an article yesterday of a study done regarding the effectiveness of stenting for occluded brain arteries, though MM disease wasn't mentioned. I'll have to check it again to be certain, but I think that in about 30% of the cases the artery soon closed again around the stent. I'll find the source and post it tomorrow.
Kim

Hi Mark,

Great questions.

I too have been following Little Luca's MM journey. She is precious. My heart goes out to all MMers and especially the children.

When my brother, who is an adult, had a recent TIA, he had numbness from the center of his head to his toe confined to one side. He also had seizure activity. However, prior to the left side numbness, he mentioned his nose and lips were numb.

The seizure activity can be an "ora" or in my brother's case, I noticed rapid eye movement as well as an "ora" meaning he felt like he was going to have a full blown seizure. So even seizure activity can come in different forms, meaning not necessarily a full-blown seizure like a grand mal seizure.

As for a stent in a MM patient goes, I read where a teenage girl in Argentina had a stent and she has MM. What I don't know is if it was successful and if the stent was actually to treat the internal carotids or placed in a vessel for another reason.

I'm not a clinician or doctor however, my thought is a stent is not beneficial to a MM patient to treat MM. I base that conclusion on the fact MM is a progressive narrowing and closing of the carotid arteries so I would think that the carotids would close regardless of the location of the stent. I'm thinking the carotids could close off before or after the origin of the stent.  I really don't know but I have never heard of any MM specialist using a stent to treat MM.

You have a great day too!

Lore  

Hi...my cara has had "many TIA's"....after her surgeries on both sides they were numerous...even up to 20 a day...very tiny and small...but was put on Trileptal medication and it reduced over a period of time down to zero but when warmer weather comes it appears again, when she got bigger she had her medication dosage upped.  She'd go months without those spells.   currently has been having them daily at about 2 to 4 a day.....we have moved from AZ to Missouri so in process of changing doctors...the new one is in Kansas City a 2 hour drive from our Missouri home.   a year ago her neurologist put her in Phx Childrens Hospital so they can moniter her and be sure what she was having was not seizures...and they confirmed they were not.  so the "TIAs" she's had all these time (surgeries were in 2004 when she was six)...really are just "spells from having moyamoya"...according to her neurologist in AZ.

Cara has been coming to me everytime she has one...shes aware of it happening...affects her speech, affects her left arm and leg...and when it passes..she yawns...and its over.......got to the point when she knew it was coming five minutes its going to happen. 

she has an appointment april 10th to have MRI and MRA in Kansas City...then we return on the 20th to see the doctor who we haven't met yet and see what they have found.

We know when she is having it...having seen it over 1500 times...in my opinion thats too much.  It'll be good to see what these doctors say in KC...that are familiar with MM (I'll find that out when I see them in KC and what kind of answers they give us).

cara calls them TIA's as it is easier to call it that.  But when it is "said" to someone not familiar with MM...they freaked and wondered if they should call 911.   We told them theres nothing that can be done...just let her sit and relax...give her fluids...then she'll resume normal duties once it passes....now 11 years old...having it more regularly lately...someone on this site asked if she's going thru puberty...could be offsetting them...maybe so.

Keeping Lucas in my prayers.

Hugs,  CarasMOM

Little Luca wrote on Apr 1^st, 2009 at 7:50am:

No, No, No Mark, NEVER, NEVER should anyone ever feel relaxed concerning a TIA or feel they are harmless!!!  A TIA should NEVER be taken lightly or feel as if it can be managed, because you never know, that’s the problem. The signs/symptoms of a TIA are the same as a stroke and brains cells are affected. That’s why they call a TIA a mini stroke. Although it’s temporary with a TIA, there is no way of knowing whether the symptoms will resolve or whether it’s a stroke situation and so it should ALWAYS be taken very seriously and evaluated. Sure TIA symptoms vary with MM patients, and some more often than others, but bottom line, neurons in ischemic areas starve and rapidly stop functioning, so that person is at risk for a more serious and debilitating stroke, which has to make it a serious concern at all times and you should always seek medical care for evaluation. There are studies that suggest that even though TIA’s cause temporary symptoms, they can still cause permanent damage to the brain.

Lore wrote on Apr 1^st, 2009 at 7:25pm:


Oh my goodness, I guess I completely misunderstood what you guys were saying.

What action do you take?

Mark

hi mark,
I just wanted to say I'm praying for little Luca and that she will be okay. I will tell you that I had 12 TIA'S and did'nt even know they happened. I had tingling and numbness in my hands and stuff but I never thought it was that. Now when I look there was other stuff that happened which makes me think this other stuff was all TIA'S. the other thing I wanted to share with you is that I had a grand mal seizure. I will tell that my eyes rolled up into my head and I was shaking and moving all over the place. I didn't know I was having a seizure my mom told me this after it happened hope this helps. I will keep little Luca in my prayers hope she's doing okay.

Paula,

It's not unusual at all for other conditions to accompany moyamoya.  I can understand your concern, but it's very good that they discovered this BEFORE going into surgery.  The doctors should be able to devise a game plan, as well as take proper precautions in the course of your daughter's surgery.

I've been there as a parent with the huge concerns that come with a child undergoing surgery, so I don't say this lightly.  Try not to worry too much.  Your precious little one is in wonderful hands.  I will keep her and your family in my prayers.  Please keep us posted as you are able.

Jill

Hi,

We had today an appointment with Dr Scott and he says that we can go home next Thursday. The only thing that is concerning him is that they don’t know exactly if the episodes that Paula has are or not TIAs because he says that a TIA doesn’t cause pain (may be, she is not able to describe, due to her age, the exact symptoms she has, like parestesias, numbness, etc.), and, on the other hand, Dr. Scott says that these episodes are too frequent (she is having one a day since surgery, and before surgery, she had from 4 to 10 a month) …. They were wondering if instead TIAs, these episodes could be migraines, but they don’t know …. Because she hasn’t headache after the episodes (only sometimes).

I have read a few these days about migraines (in this case would be the aura without headache because she complains about headache only in a few episodes, not in all of them) and truly, some of the episodes of Paula are like the aura: the “pain” starts first in one finger, a few minutes later in the hand, and a few minutes later (can be 10-15 minutes) finishes with “pain” in her mouth (lips or tongue). I have read that these symptoms are very typical in the sensitive auras, although they are too symptoms of TIAs. The main difference, is the way in which they appear: in a TIA, the symptoms appear all at the same time, in a few minutes (from 2 to 5 minutes), and in a migraine, symptoms appear gradually, that it seems what Paula has …. Maybe, what she is having is a mixture of TIAs and migraines at the same time, I don’t know ….

I only wanted to share these symptoms with you because I think I have read here that some of you have symptoms as Paula’s ones and the frequency is similar too ..

Regards,

Paula