Possible Cerebral AVM?

[momof3boys]

Hello everyone! I have a question/concern that I wanted to see if I could get some answers to before we see the doctor on Monday (gosh, I hope a lot of people decide to check in here this weekend!).

I have pulmonary AVMs - had 5 vascular plugs put in 01/04, and have more small ones probably to be plugged in the next few years (they were not large enough to require it when I was last checked). My oldest son (13) also has pulmonary AVMs. We are suspected to have HHT, but no definitive diagnosis exists yet. Over the past several weeks, I don't recall a specific time that I noticed this at first, my youngest son - turned 7 today - has developed facial tics that have increased in severity and frequency. It has been really noticeable and worry-inducing this week. I called the pediatrician, who had me take him in. He ordered an EEG for Monday and has made a referral to a neurologist. He suspects that this coud be the result of a cerebral AVM pressing on a nerve in his head. This is based on the symptoms I mentioned above, as well as the family history.

The tics started out, as far as I can recall, as a wide smile sort of action, combined with a pronounced blinking. He has also had tongue-out pronounced blinking with head tilt, followed by a pronounced chewing sort of action (with nothing in his mouth) with the blink and tilt. It's so sad to watch...and he is completely unaware of it when it happens. My husband thought he was doing it on purpose and yelled at him, which brought a bit of emotional meltdown. He knows now not to blame him, because it is clearly not a voluntary action.

My question is this - for anyone with cerebral AVM experience and/or facial tic experience like this - have any of you seen this sort of symptom from cerebral AVMs, or if not what if anything has been the cause of this sort of tic experience?

Any and all responses will be greatly, greatly appreciated. I'm generally a pretty non-worrying laid-back positive-thinking mom, even in medical concern areas, but this one is really hitting me in the gut. :confused:

Thank you,

Peg - mom of Michael (13, PAVM, ADHD) Marcus (11, Asthma, ADHD), and Christian (7, facial tics...???????)

[decker]

Hello Peg,

I cannot help much and can't seem to find much for people here to talk with
as I haven't a response either from anyone. I can give you this link though although and people can contact you through email as it is not quite set up like this site. It has helped me alot there. Good luck and wish you didn't have to be checking the sites out.

http://www.westga.edu/~wmaples/avm13.html

[momof3boys]

Decker,
Thank you for your reply and for the link. That was a site I had forgotten about, but have visited in the past. EEG is today, but we still don't know when the neuro appointment will be and I"m told it will be a week or two before any results come from the EEG....great stress reliever there, huh?!

[decker]

It does seem to take time to get to see the neurosurgeon is some hospitals.
Other hospitals can be quicker about it. Sounds like you already have had some experience with this. Here's another link I liked for viewing some procedures and in some cases you can email your questions or send in a cd of your condition and get an opinion from them. http://www.or-*********/

Must be stressful indeed for you to have to deal with your own plus your childrens'. How are you handling it all? Are you able to take advantage of any other types of relief as in massage, reiki and such?

[momof3boys]

Decker,
Stress Relief? Huh?! ;-)
I typically just don't get stressed about it. Our pediatrician always tells me he doesn't know how I do it, and as each new problem arises with one of the boys he just shakes his head and says it again. When my youngest was born with severe/profound hearing loss, it was the doctor who couldn't face the truth...he kept telling me he didn't want me to be right. Well, healing has long since taken place, and I'm here to tell the story! ;-) I always tell the doc that "how I do it" is that God won't allow me to have to deal with any more than I can handle with His help....and although there are several days that I wish He didn't have so much confidence in our strength as a team, the boys and I have survived it all!

Massage...always hurts me (guess I"m too darn tightened up for it to feel good!) although electric stimulation therapy that I used to get on my back is wonderful...reiki and other stuff....geesh, who has the time to learn or go to stuff like that? Not me! Thanks for thinking of me though!!

Peg

[decker]

That's good that you have found your way to handle.
I guess you have looked further into the site for other subjects
that might involve those problems?
I have a couple of friends that do the reiki and stones and I find that
it helps keep me physically relaxed and have good sense of well being.
Take that along with God and I am as good as I can be right now.
Although as surgery time gets closer I find it pops to the tops of my
thoughts. :)

[momof3boys]

hmm..I thought I had updated here, but apparently hadn't. The EEG results were normal, although he did the tic stuff during the EEG. Neuro diagnosed transient tic disorder, but to be safe ordered an MRI/MRA of the brain for January. I feel a lot better now! ;-)

[decker]

Hello,

Yes, you did update but on a different thread. (I think) :)

Thinking of you during this holiday season and wishing the best.

Recovery is going great here. I am alowed to pick up five pounds now and
to basically use my common sense and increase it and activitiy gradually until
I am back to speed. :) donna

[momof3boys]

Well, I'm back..
glad your recovery is going well (probably even better since your update!). The MRA was normal, but the MRI showed a non-specific brain lesion. The nurse told me that when I called, but said the neuro is out of town and will look at the film when he returns, then I'll hear from them again. I was shocked she would tell me, but glad to know at least the MRA was normal. Now I'm wondering what the non-specific lesion on the brain of a 7 year old boy means..... will update when I hear anything else!:confused:

[decker]

Hi,

Sorry so late in checking, so little going on here that I am starting to forget to check it.

Yeah, I to wonder what a non-specific brain lesion means. Hard for me to believe that you got that much information from her. Have you had time to look it up? How is he feeling? Hugs and prayers to you, donna

[momof3boys]

Donna,
Well, there is an update but it's not really anything that's clarified stuff for me.

On Tuesday (the 19th) I heard from the neurologist's office that he felt it was either a small tumor or inflammation of unknown origin. The choices were follow up with a neurosurgeon or wait 6 months for another MRI. Given that he has been telling me daily that he has a headache, even though they are not bad ones, they suggested we go ahead and schedule with the neurosurgeon. We were given a 3:30 appointment on the 20th. That was nice, but given the usual wait time to see specialist it was a little unnerving to have been given an appointment so soon!

The neurosurgeon showed me the scan - the lesion is deep (it appeared to be smack in the middle of his little head!) but small. He said it may be an AVM, which just doesn't have enough volume/flow to have showed up on an MRA, or it could be a small tumor, or it could be one of those cases of something showing up on one scan and being gone on the next, with no explanation. He said that his level of concern at this point in time is "A scooch above zero" so low because of the size, but on the scale because of the family history.

ACK! He said that it's so deep, we wouldn't want to get in there to do anything - but that gamma knife and radiation would take care of it. So...we're in a holding pattern just hoping that there are no sudden splitting headaches. Of course, I'm a mom who will be doing a ton of research and discussing this over those 6 months!

I'll keep you posted

Peg

[decker]

Hello Peg,

Oh, Peg.. that is scary. Sorry and will put you all in my prayers.

Well as you know avm's are there from the beginning. They didn't find mine
till I was 55. I really didn't have much for symptoms until my 30's I started to
get migraines which I found controllable when I turned 50. That would be a
hard call to make. Like everything else and you said research. If you want me to help look anything up let me know and I will spend some time finding
information also.

I have been to the gamma knife doctor and that was almost a choice to make for me instead of the surgery. but.. my avm was small and not deep, rather and 'easy' removal, I went for it. When do you see the gamma knife doctor?

I am trying to remember how many children are diagnosed with this so early.
I think it was that west maples link had some stories with children.

Let me know if I can help and I will keep checking for posts. hugs, donna

[momof3boys]

Donna,
Thanks! Prayers are always welcome...
We have no appointment with 'the gamma knife doctor' - it's just how the neurosurgeon said this would be treated if it ends up being something that needs to be treated rather than something that is "there on one scan, gone on the next." The only planned thing right now is a 6-month follow up MRI - sooner if there are neurologic changes in the meantime.

I heard today from a friend of mine whose sister's niece has had gamma knife done on something; her understanding was that you are limited to three such procedures, so you have to hope that all is taken care of very accurately and completely. Do you know anything about that? It's the first I've heard of limits on it, but then I always figured once was enough anyway.


If you could supply the link to west maples I'd appreciate it - not even sure what you're talking about, but I'm sure if you mentioned it it's something that would be helpful! Meantime I'll google it and see what comes up.

Thanks again!
Peg

[decker]

Hi Peg,

This link is another support group and has alot of reads.

http://stu.westga.edu/~wmaples/

Not sure what you asking about the gamma knife, but the way I understood
it was -
- In my case the avm would be specifically radiated which would cause it to
can't think of the word.. to deterioate. This could take 2 to 3 years before
that happened and it was still subject to rupture during that time period and
probably would me taking medication for awhile. They would monitor it during
that time and it would be possible that still a small percentage would be left in
which case they may radiate it again.

I decided that since mine could be defintively removed and no medication afterwards
that I would go for that option and be done with it. Mine was located in good spot
to do this operation so...

hugs and prayers,
donna

[momof3boys]

Hi...
What I was asking about the Gamma Knife was whether you (or anyone) had heard that there was a limit to how many GK treatments could be done - because my friend's sister's relative had GK treatment and my friend was of the understanding that you were limited to 3 GK treatments for some reason. I had always thought it was one treatment anyway, and didn't figure 3 would be needed. However, I also never realized it would take so long after the treatment to be gone. Since whatever my son has is too deep for surgery, I guess I'll have to learn to do this waiting part really welll.....


I have been checking out the site you told me about..only in small doses, though. My first foray into those stories was pretty overwhelming. I want that new MRI NOW! ;-(

[benmunoz]

I wish I had found this forum when I first had my AVM. In the meantime, some fellow survivors developed another forum site located at http://www.avmsurvivors.org. You might find some additional information there.

Sincerely,
Ben Munoz
http://www.avmsurvivors.org

[momof3boys]

Ben,
COuld you not have just posted ONE THREAD letting us all know about this website? Posting as a response on every thread in here was a little much. Many of us have established communications with each other and look forward to receiving responses about our actual posts; thinking someone has responded to my post and finding your announcement (a general announcement, not even a response to my post!) not only posted as a reply to my post but on all these other threads was really disconcerting and discouraging. Next time you want to let us all know about a great website you think we'd be interested in, just post a single announcement. Sorry, but this really bothered me.

[momof3boys]

:(
My son had his follow-up MRI last week, and today I heard from the neurologist's office. The small cerebellar abnormality/lesion that showed up on the previous scan was still there, with no changes. No growth, no shrinkage. So of all the possible things we were told this could be, only one has now been ruled out. They were:

1) swelling of unknown origin
2) small tumor
3) arteriovenous malformation
4) one of those things that shows up on one scan and is gone on the next

Number four is out of the running. So.....I'm back in a holding pattern for 6 more months. If I only knew WHAT it was, I could at least focus my research!
Anyway..I'm off to the maples site. Unfortunately, between family history and the no-growth, I'm thinking AVM is probably the most probable of the remaining 3. I think swelling would have caused a lot more problems by now, and that if it were related to the tics it would have shown some change on the second scan - either size, or shape of the swollen area, or something. A slow-growing AVM, on the other hand, seems to me would easily be the same over a 6 month period in a 7 year old boy.

Any thoughts?

Peg

[decker]

Hi Peg,

Sorry, so long. The summer has been odd.
How is the Maples site doing for you?
It must be hard on the waiting. What you are saying about
the avm possibilities makes sense.

Hope you all are having a nice summer.
:)donna

[momof3boys]

Donna,
I still am leaning (reluctantly, but leaning) toward it most likely being an AVM. The enhancement seems to be something that would apply to an AVM, as well as the lack of growth. We are seeing both a genetic counselor (who will take on the task of coordinating the care of our family) and the neurosurgeon who has taken over Christian's case: the new chief of neurosurgery at our children's hospital! ;-) We certainly seem to be becoming well-connected, at any rate! I will let you know what I find out...

As for the Maples site....lots of reading, and frankly I can only do it a little at a time. It is scary. I am pretty cautious now about leaving my son with people who are unaware of the situation, and now carry copies of his MRI results/reports and have a DVD of his MRIs/MRA so that if and when anything should happen, I can provide them to the medical folks on site. Maybe a little overboard, but knowing that it is suspected and not being as prepared as I could be, especially after reading those stories, I could never forgive myself for not doing this! However...having said that, I do let him do his everyday activities, including playing soccer (but I'll be ordering headgear for him). His teachers are aware of the situation, as are the secretary, principal and nurse. His coach is also aware, so I am okay (for a while, anyway!) leaving him at practices to go pick up his brothers or drop them off. I'm only a mild spaz! ;-)

Anyway....should/might have more to tell you in a couple of weeks. I'll check in!

Hugs,
Peg

[momof3boys]

Okay..maybe I'm wanting results where I shouldn't.
We had another neurosurgery appointment last week, with a new neurosurgeon (the previous one moved). He walked in saying he agreed with the previous one, but then proceeded to tell me his opinions on whether this is an AVM and whether it has anything to do with the tics..both opinions were OPPOSITE of the previous surgeon's opinions! The only thing he agreed with was that we wait and re-scan in 6 months! ACK!

[decker]

Hi Peg,

You know you do sound like you are as on top of it all as you can be
and doing all that you can. I think it is good that you are letting him
play and be a child. I don't think you are overboard at all.

:)donna

[momof3boys]

The tics are back, and there are several of them...I am definitely going to have to put in some time over at the Tics and Twitches and Tourettes boards...but the clincher is I don't know if the problems are mutually exclusive or not. I just don't know where he/the problem fits in! Ack!

Thanks for the reassurance, though ;-)

Peg