Angioma Alliance

kelly: I told jeannette that I was just sitting in and was the one with the surgery and ca and she has a daughter that is 21 in nc who is waiting and seeing with a venous and ca
kelly: yes

Tasha_20: Jeanette has one of your family members had surgery?

Jeanette: no my daughter is waiting until she has symptoms first

Tasha_20: How old is she?

Jeanette: she has had a slight bleed and some iron deposits but no seizures
Jeanette: 21

Tasha_20: Do you know were the CA is located?
Tasha_20: My husband and Kelly's were both in the brainstem

Jeanette: in the front not near the brain stem doctor (chief of neurology at Duke in Durham) said it is in the best possible location

Bill entered the room.

Tasha_20: That is good news if she ever does have to have surgery

kelly: great
kelly: if you have to have one

Tasha_20: Hi Bill - welcome
Tasha_20: So is there anything you guys want to talk about?

Jeanette: Well, I was wondering about recovery but since y'all has been in the brain stem area that is another ball game.

Bill entered the room.

Jeanette: What type of symptoms did y'all have?

Tasha_20: I think so but they do say the recovery is similiar to a bleed.
Tasha_20: Hi Bill

Bill: I'm back... technical difficulties

Tasha_20: What were her symptoms with her bleed - they sound minimal

Bill: Hello - I've rejoined after a few "technical difficulties"

kelly: hello

Tasha_20: Welcome - do you have family or friend with a CA

Jeanette: She didn't have any other than she has headaches. We only found out about the bleed by doing a followup MRI

Bill: Yes, my daughter who I'm expecting will join soon.

Tasha_20: Has she had surgery?

Jeanette: Bill, is your daughter's near her brain stem?

Bill: It's scheduled for Friday.
Bill: no

kelly: where is her ca?

Tasha_20: Wow - I hope we can help

Jeanette: If you don't mind I'll be happy to keep her in my prayers - what is her name?

Bill: right parietal

Jeanette: Bill, has she been having symptoms? If so what?

Tasha_20: I wish I was more familiar with the area - my husband was in his brainstem

Bill: headaches, dizzyness, numbness, vision problems

Jeanette: So I take it the MRIs indicated excessive bleeding?

Tasha_20: What have the Drs. said about recovery time?

Bill: Yes, MRIs, bleeding but maybe not TOO extensive.
Bill: Not sure about recovery time. 5 days in hospital and a few weks at home after that. Sounds a tad optimistic to me.

Jeanette: My daughter Marissa is 21 and her CCM is in the same place as your daughter's.

Tasha_20: Sometime surgeons tend to be optimistic but hope for the best and be prepared for the worst

Bill: I am definitely hoping for the best.

Jeanette: My doc said 4-6 days in hospital and 6-8 weeks recovery at home.

Tasha_20: It sound like that location is an easier recovery
Tasha_20: I will also keep your daughter in my prayers
Tasha_20: Will you have lot of help from family/friends?

Bill: You know, I could be wrong about the "few weeks". Maybe it's more like 6-8. I wish my daughter were here to correct all my mistakes.

kelly: I hope she has a successful surgery and speedy recovery

Jeanette: Bill, would it be possible for me to keep in contact with you and your daughter during this difficult time? After your daughter has had time to recover I would wonder if she would be willing to talk to my daughter about her symptoms and surgery?

Guest2429 entered the room.

Bill: I don't want to speak for her, but I'd guess she'd be more than willing to share her experiences.

Tasha_20: Welcome Guest

kelly: it really does help to talk to others we have found

Bill: My daughter is in NC too.

Jeanette: My daughter is really wanting to talk to someone that has a similar condition
Jeanette: Where in NC? I'm in Raleigh

Tasha_20: I was wonder if you two were in the same area?

kelly: wow

Bill: Charlotte

Jeanette: That's pretty close. If y'all need anything call my cell phone number and I'll be there!

Tasha_20: How is you daughter cooping Bill?
Tasha_20: Sorry - coping

Bill: Pretty well, actually. She has her moments, tho. Kinda scared but at the same time she's committed to putting this behind her.

kelly: sometimes the anticipation can be tough

Tasha_20: Great - sometimes it is harder on the family member.

kelly: right

Tasha_20: My husband was the strong one

Bill: It is tough and I expect it will get tougher until Friday

Tasha_20: It must be hard to see your child going through this - no matter what age

Jeanette: How old is your daughter Bill?

Bill: She's 23.

Tasha_20: Your stories are so similiar - I am really glad you were both here
Tasha_20: Guest 2429 do you have a family member or friend with a CA?

kelly: i was just thinking the same thing

Bill: I'll talk to Cristina and see if/when she's able to write

kelly: and so close in the same area of the country
kelly: oh is it christina from the last chat?
kelly: I remember you and she were there? and I right?

Jeanette: My daughter just finished her 2 year degree and really wants to get her 4 year out of the way. I wish she would have the surgery and get it over with while she is healthy and has great insurance (mine) and I can get paid while taking care of her. If she has it later and the CCM's timing who knows.

Tasha_20: The recovery process is much faster - the younger and healthier you are

Bill: Yes, Cristina has been pretty acive in past chats but can't be here today.

Tasha_20: My husband was 28 and I was so glad he was so healthy
Tasha_20: Also, we had great insurance too - we paid nothing out of pocket

Jeanette: I'm sorry. I just spoke with my daughter and if you get a chance to call me sometime I'll give you my daughter's cell phone number and maybe Christina and Marissa can chat. Marissa would be happy to call her back and pay for the call.

Tasha_20: Of corse who wants to stop life to have surgery in there 20's

Jeanette: Bill, I can only imagine what you are going thru this week in anticipation of Friday. Do you feel like your doctor has explained all the risks? My daughter was worried about the risks of the surgery but it seems to me that is a one time risk as long as the CCM is in there it is a daily, minute and every second risk.

Bill: Well, Cristina's applying to grad schools and wants to get this "out of the way" so she can get on with her life. What a tough decision, tho.

Jeanette: Yes, I sure it was. My daughter moved back home thinking she would have the surgery but has changed her mind.

Bill: I would guess Cristina has changed her mind a half dozen times. I don't blame her.

Tasha_20: It is such a hard decision especially when you are in the prime of your life
Tasha_20: I am glad my husband had surgery because we will never have to worry about it again

Bill: It is tough. SHould she wait and hope that surgical procedures improve? And take the risk of some sort of catastrophic hemmorhage or do the surgery now? Tough decision. Originally I was in favor of waiting but I have changed my mind & am 100% behind her.

Jeanette: I agree. It has to be their decision thou. Marissa is very healthy otherwise and takes very good care of herself (diet and exercise). If it was me I would have the surgery but unfortunately it isn't me.
Jeanette: Even thou I don't agree with Marissa's decision to wait I'm 100% behind her too

Tasha_20: It sounds like both CA are not very agressive - thats a good thing

Jeanette: Oh, I know what I wanted to ask you Bill, did Cristina have to have regular MRIs to monitor the bleeding?

kelly: you are both great parents

Jeanette: Yes we are

Bill: Yeah, C has an MRI every 6 months for the past 3 years.

Jeanette: That's what Marissa's doc is recommending as well. She just had one in Dec. Is the surgery going to be in Charlotte?

Bill: No, surgery is here at UVa in Charlottesville, Va.

Jeanette: oh didn't know if y'all were going to have it at Duke in Durham or where

Guest4838 entered the room.
Guest4838 has left the room.

Jeanette: Kelly and Tasha, did your family members know y'all when they were in the recovery room?

Bill: They seem to have a pretty good dept at UVa so we're confident about that.

kelly: yes
kelly: (I was the patient)

Jeanette: That's right I'm sorry - did you know your family?

Tasha_20: Sean was under lots of sedation a first - so no not right away

kelly: I knew what you meant
kelly )
kelly )

Tasha_20: He also couldn't talk because he bit his tounge after surgery - but he would flip me off a lot

kelly: lol

Jeanette: LOL that was a good sign

kelly: no one could understand my speech

Jeanette: Did your speech return to normal in its own time or did you have to go thru rehab?

kelly: I tried to sign to my mom thinking she could read sign langueage
kelly: bith
kelly: both I mean

Tasha_20: Seans speech was slurry too - like he was really drunk
Tasha_20: It is normal now - no therapy

kelly: what are they telling Cristina for possible deficits from surgery?

Tasha_20: What about a scar is she worried about that?

Bill: Sorry, kinda busy on the phone. C was told she may have slurred speach & some vision loss.

Tasha_20: I think that the vision problems are the hardiest to deal with. Sean had double vision so he couldn't drive, etc

Guest2429 has left the room.

Jeanette: Hopefully any symptoms will be short-lived

Tasha_20: I can still hear him slur if he is really tired or drinks alcohol. Otherwise his speech and vision are pretty normal.

Jeanette: I realize that each case no matter how similar is unique. You hear about good cases and bad cases and until you have the surgery you don't know how it will be for you (or your loved one).

kelly: do you have any concerns or questions about your part? the family has such a huge role in the recovery- it can be so hard on the loved ones
kelly: that is right

Tasha_20: True - Sean's case was much worse than we thought but we are still glad we did it - cause it is over now.

kelly: from all the conversatons I have had with my husband and parents- I know it is so hard to watch a loved on go through this process

Tasha_20: It was really hard for me because I didn't know HOW to help

Jeanette: I use to be a firefighter so I handle stress very well except when it comes to my daughter. I've had 12 operations myself and none were a big deal. But the thought of my daughter having to go thru this is more than I can handle sometimes (tear tear)

kelly: I am sure

Tasha_20: I think it must be the hardest to have a child going through this

kelly: I have children so I understand

Tasha_20: You sound like a very strong person

Jeanette: Bill, I will be with you and Cristina on Friday in spirit. May you both find comfort and strength in my prayers.

Bill: Thanx. I appreciate that.

Tasha_20: Thanks you guys for comming - I am so glad you both meet

kelly: what time is her surgery?

Jeanette: me too.

Bill: Friday A.M.

Jeanette: Will you please call my cell phone and leave me a message sometime Friday?

Bill: Will do.

Tasha_20: Please let us know how everything goes

kelly: it is great you can be support for each other!

Jeanette: Thank so much for arranging this - we met for a reason

kelly: with such similar situations

Tasha_20: I will keep both of your daughters and your families in my prayers

kelly: me too

Tasha_20: prayers

Bill: Gotta go - but I'll call Jeanette on Friday.

Jeanette: Sounds like a plan - me too was using my lunch hour

Bill has left the room.

Tasha_20: Anything else you want to ask Jeanette?

kelly: bye bill

Jeanette: yes
Jeanette: Did you Kelly or your loved ones Tasha seem to be in a lot of pain for a long time?

kelly: hmmm...

Tasha_20: No - I think it is more of furstation to get back to normal than pain

kelly: what do you call a long time?
kelly: remember sean and I had brainstem so we are a bit different

Jeanette: 3 days
Jeanette: that's true

Jeanette: I think Cristina will be a good one to ask

kelly: tons more frustration than pain over time

Tasha_20: I think Sean actual pain was from swelling and it was maybe 2 weeks - but his surgery was much harder

kelly: right

Tasha_20: He is still get fusturated because he can't do everything as good as he used too

Jeanette: My daughter can't stand to even get a shot. I've she freaks just to pull a bandaide off. The whole idea of hospital and surgery scares her so badly that she can't even start to think about the surgery itself.

Tasha_20: She will be a sleep for most of it
Tasha_20: Medication should take care of most of the pain she is in.

kelly: the first few weeks were the owrst for the pain then the other stuff is the struggle- again cristina will have a more similar situation thatn sean and I did

Tasha_20: Hospitals do suck but hopefully the stay will be short

kelly: right

Jeanette: When and if she has the surgery.
Jeanette: y'all have been great but I've gotta get back to work

kelly: keep us posted on how she is doing as well

Tasha_20: True - she may never have to go through all this

Jeanette: I sure will!

Tasha_20: Take care Jeanette

kelly: take care - bye jeannette

Jeanette: Y'all too
Jeanette: by

Tasha_20: bye

Jeanette has left the room.

Tasha_20: Thanks so much for your help Kelly

kelly: you are welcome

Tasha_20: You are the best

kelly: no you
kelly )

Tasha_20: Gotta go but I will save this too

kelly: ok