Angioma Alliance

holly: my 5 year old blinks and says his eyes hurt, we have been to the eye dr and neuro's and they don't seem to think there is any connection. Does anyone have any ideas?

Connie_Lee: Does he hurt only when he blinks?

Amy: Could it be that he has double vision and that is a reaction for him - to blink??

holly: he only says his eyes hurt, no burning and I have watched him sleeping and he doesnt seem to do it then

Connie_Lee: So, he blinks a lot more than other people?

holly: Amy, double vision? What do you mean?

holly: he knows he's doing it, it's not like a tick

Connie_Lee: I'm not sure Amy got that - double vision is seeing 2 images, usually side by side, at the same time

Amy: Sorry, I stepped away.

Connie_Lee: Is he on any medications?

holly: i guess since the eye dr said all's well in that area it can't be double vision. No meds.

Amy: Wondering if its really his eyes that are bothering him... or could it be a headache with sensitivity to light?? (Just thinking out loud here)

Connie_Lee: Holly, we can send your question on to our child neurosurgeon. He might have an idea. It would also be good to post it on the community forum. There are many many folks who use the forum and some might relate.

Amy: Good idea, Connie.

holly: sounds good, i appreciate any info

Connie_Lee: One of our members talks about feeling like her eye is being squeezed - she might be a good resource

Connie_Lee: Her name is Michelle and she's been told it's like having a migraine in her eye

Connie_Lee: She has an angioma in the pons

Connie_Lee: I can put you in touch with her if you like

holly: sure

Connie_Lee: Another person I'd suggest contacting is Liz Neuman - she has 2 sons with CA. One is 6 and the other is 4.

Connie_Lee: Each of them has had a surgery

Guest2793: I have to go. I'll be back in a few days with more info. thanks!

Connie_Lee: She's active in Angioma Alliance. If you send your email address to info@angiomaalliance.org after the chat, I'll get you in touch with them.

Connie_Lee: Bye Pete!

holly: okay

Amy: Bye Pete - keep up the good work.

Connie_Lee: Holly, how have you been holding up as the mom and wife?

Guest2793 has left the room.

Amy: Holly, that sure is a lot to deal with!

holly: really well, the only time its really hard is when the kids ask serious questions and there are no definite answers.

Connie_Lee: Holly, I have a 5 year old daughter with multiple cavernous mangiomas. She hasn't really started asking the questions. What have your sons asked?

holly: 6 year old really goes with the flow just doesnt like to miss school for drs appt. the 5 year old just told me the other day that he thinks his head is bleeding inside and thinks he will die - that was hard to handle.

Connie_Lee: Wow, how did you answer him?

holly: just told him that we go to the dr so she can watch the inside of his head make sure everything looks good.

Connie_Lee: Great answer.

Connie_Lee: I'm not sure how honest to be with Julia at this point.

Connie_Lee: She knows that I'm very involved with Angioma Alliance and that I talk to people who have the same illness she has.

holly: i really don't think there is a right way to handle it, i just try to approach it like i do when they ask where babies come from - only what they need to know, not too many details

Connie_Lee: She knows she had surgery a year ago, and has been told about her previous 3 surgeries, but I don't think she realizes that she has more cavernous angiomas.

holly: does she really remember?

Guest1297 entered the room.

Connie_Lee: Oh yes, she was almost 4. She even remembers the video she watched the evening after she came out of the OR.

Connie_Lee: Hi Guest 1297

holly: my sons remembers what he has seen in pictures but thats about all and surgery was just a year ago

Guest1297: Hi

Amy: Julia is quite the intelligent little gal - she is something!!

Connie_Lee: Julia has been talking more about her surgery in the last few months - she really does remember details.

Connie_Lee: Guest1297, do you have a child with cavernous angioma

Guest1297: Yes, my daughter, she is 16 years old, she has a cavernous angioma in her brain stem

Connie_Lee: Does she have problems from it?

Guest1297: She has had 2 bleeds

Connie_Lee: Is it surgically inaccessible?

Guest1297: The deficits she experienced from the bleeds have just about completely diminished

holly: Guest1297 - how were they discovered?

Guest1297: It all started with a bad headache for about 3 days

Guest1297: On the 4th day she awoke with tingling in her right hand and foot and mouth

Amy: That was how mine all started - worst headache of my life!!

Guest1297: I took her to urgent care and they sent her for a CAT scan

Connie_Lee: Did it show on the scan?

Amy: How soon after that did they diagnose her with a CA?

Guest1297: The doctors say it will bleed again and at this point we are struggling with the decision to have surgery to remove it or wait for another bleed.

Connie_Lee: Where in the brainstem is it located?

Guest1297: She has had braces, so the MRI was not clear. Her braces were removed Monday so we will go back for another MRI. The doctor needs this to see the size and an accurate location and size.

Connie_Lee: Holly, where are your youngest son's angiomas?

Guest1297: We were told with surgery she will definately have disabilities, so she does not want surgery.

holly: the sylvian fissure region is the only one they are really concerned a/b at this time. do you know anything a/b this region?

Connie_Lee: Don't know much about the Sylvian fissure except where it's located - is the angioma deep in the fissure?

Amy: Guest1297: I had an angioma removed from my basal ganglia when I was 23. My situation started with a severe headache and then tingling and pressure in my eyes. The doctors were amazed that I didn't have any other deficits at the time. Mine had bled 3 times in a matter of 4 months - so my 2nd dr strongly advised surgery.

holly: dr didn't mention how deep, just that it is entangled with many veins in this area

Guest1297: Did you have surgery and disablilities from the surgery.

Amy: Guest1297: I did have surgery with my 2nd surgeon. The first one had indicated mine was inoperable. But after the frequency of the bleeds I found another doctor. I had left-sided weakness following the surgery. I was also on anti-seizure meds for 10 months, although I had never had a seizure.

holly: my husband had his 2 bleed in the pons of the brainstem, he had therapy for a year, he is back to work with only minor disablities. He does have left side facial paralysis from the nerves being stretched to reach the bleed.

Guest1297: Does anyone have information on CA in the brainstem with surgery?

Connie_Lee: Results vary from person to person for many reasons. It can depend on age (younger is better), experience of the doctor, how close to the surface of the brain the lesion is, and what part of the brainstem is involved.

Amy: Holly: What was your oldest son's recovery like following his surgery?

holly: he has "anomia" (you have word in mind but it doesn't reach your mouth)but he is progressing well in 1st grade.

Connie_Lee: At the Angioma Alliance family conference in June, our docs told us to expect that surgery will initially make things worse - as if the person had another bleed. However, they also said that the person should be able to get back to the function they had before the surgery with time and therapy.

Amy: Holly: Did you say he has 2 other angiomas?

Connie_Lee: Holly, my daughter has had anomia from anti-seizure meds.

holly: surgery was the only answer for my husband, they said he would not make it without it. We feel very lucky!

holly: My son is not on any meds, they were discontinued a month after sugery

Amy: Guest1297: The decision to have surgery or not really varies case by case. There are so many variables that play into the mix. Hopefully, with your daughters braces off, the MRI will provide additional answers.

holly: I will keep your daughter in my prayers.

Amy: One thing that helped in my case, prior to my surgery, I had a functional MRI, so I knew going into it what the specific risks were (i.e. what functions that area of my brain controlled).

Connie_Lee: The anomia was particularly awful and frustrating for her (and for me). Physical deficits we can handle - verbal problems seem harder. I'm so glad Julia's went away when we changed meds.

Connie_Lee: Guest1297 - are there any questions you'd like me to pass on to our medical advisory board?

Amy: Guest1297: If you or your daughter are interested, I recommend reading my story on the website. Additionally, I'd be more than happy to share my experiences with your daughter or answer any questions you or she may have. http://www.angiomaalliance.org/Stories/jagemann.html

Guest1297: At this time since this is so new to me I will wait to talk to the doctor after the new MRI. Thank you for your help and we will check your website.

Guest1297: Thank you also for your prayers, this is very much appreciated

Connie_Lee: Holly, did you have any other questions that you'd like me to pass on?

Amy: The Community Forum on the website is also a valuable resource and a good place to post questions to get experiences back from the audience.

holly: Just the blinking problem and maybe any info a/b the sylvian fissure region. Thanks

Connie_Lee: I'm going to leave the chat room now, but if you would like to keep talking, please feel free.