Michelle, Hi my name is Jenni. I am gonna be 30 this month. I have 3 beautiful boys who are 9, 10 and 11. Back in 2003 my boys were all very little and my...
23516
Michelle
suttersinga
Jun 10, 2012 7:51 pm
Jenni Thank you for sharing your story...my heart breaks for you & your boys. As a mom I have been more concerned about my kids diagnosis then my own...we are...
23517
angelblum92
Jun 11, 2012 3:15 am
Hi Michelle, My name is Angel and I live in Louisiana. I am 3rd generation gardner's syndrome. I have younger cousins that are 4th generation. This will be a...
23518
Vanessa
vanessavy
Jun 11, 2012 1:43 pm
I am 35. I was diagnosed 9 months ago and had surgery Dec 9th. I am 6 months postop from the BCIR surgery. jpouch wasn't an option for me since I had rectal...
23519
Steve
sanddude1998
Jun 11, 2012 7:10 pm
Hi Michelle, as for options other than surgery --- I don't know of any --- and depending on the condition of your rectum, you may be able to keep your rectum,...
23520
Michelle
suttersinga
Jun 13, 2012 3:13 am
When meeting with my genetic counselor I mentioned I wanted to do the bloodwork for my kids as part of their annual check-up...with the plan not to disclose to...
23521
Jenni Craig
cjenni3
Jun 13, 2012 5:37 am
Michelle, I actually decided to get my boys tested when they were very little. Obviously they wouldn't understand at 1,2 and 3 years old what it all meant but...
23522
Cari
dezzielusmama
Jul 2, 2012 8:45 am
After searching through the archives, it looks like there were some thinking they might need a whipple or gastrectomy, but has anyone out there had to have a...
23523
Steph
rain_storm10...
Jul 2, 2012 1:42 pm
Sounds like he & you have been through a lot. I have no answers for you being as no surgeries are available for me right now because my desmoid is in the...
23524
Lore Sullivan
teach.bear
Jul 2, 2012 6:30 pm
I would get at least two additional opinions before agreeing to surgery. I would want both to be at centers with lots of experience with FAP/Gardner's...
23525
vanessavy
Jul 3, 2012 3:56 am
I have had a vertical sleeve gastrectomy and a proctocolectomy (had BCIR surgery). I grow very large polyps with severe dysplasia in my Duodenum now that my...
23526
goodnightmoon26
Jul 5, 2012 10:36 pm
Hi Michelle, I was only 5 yrs old when I was diagnosed for FAP. My mother had just passed away from Gardners but didn't know that she had it.By the time she...
23527
vanessavy
Jul 7, 2012 7:15 pm
So I had my BCIR surgery back in December thanks to people telling me other options I had besides jpouch and a bag. Have had a lot of issues since, pouch is...
23528
wr4162001
Jul 8, 2012 7:30 pm
I agree with you in terms of MDA based off of my experience there. My perspective is I would rather never return to MDA, but if I am ever in a situation where...
23529
Cari
dezzielusmama
Jul 23, 2012 5:10 am
We met with the surgeon last week. We don't have a large center near-by (Oregon) and don't have the finances to get anywhere. What has been proposed is a...
23530
Chuckus
charles99_9
Jul 24, 2012 2:28 pm
I'm late on the conversation.............BUT, let me make a recommendation. I had a wonderful surgeon who is VERY talented and "The Man" do a heavily modified...
23531
Vanessa
vanessavy
Jul 25, 2012 8:27 pm
Well the good thing is I don't need surgery and my GI, Surgeon and Geneticist all agree I won't ever either. I have a new fancy GI that ablates the area...
23532
Gary Murdoch
bailey392000
Jul 27, 2012 3:49 am
I was just near by Cleveland Clinic and if in need of a hotel the Holiday Inn is brand new there and less expensive then Hampton inn...FYI Great news ...I get...
23533
Melissa Berry
mjbpsu
Jul 27, 2012 12:34 pm
Hi Gary - which Holiday Inn and how far from the hospital? We will be there next month for my hubby's surgery and am looking for a clean and cheap place to...
23534
Gary Murdoch
bailey392000
Jul 27, 2012 1:26 pm
Hi Melissa! I used my husbands email...its Danielle : ) Its one third mile down road...walkable. And has clean pool too! Although if not happy with that price...
23535
lily_sasaki
Jul 27, 2012 1:52 pm
It is very refreshing to see someboy with such a positive attitude. Good for you. My loved one is suffering from FAP and his desmoid tumor is surgery induced....
23536
goodnightmoon26
Jul 27, 2012 7:00 pm
Lilly I just finished my third sycle of chemo and have done really well on it.I am now going to have an MRI on August 1st.I then will start my 4th cycle of...
23537
wr4162001
Jul 28, 2012 4:16 pm
Try calling the American Cancer Society and see if they can get you a free room. Last year when I went to Seattle for my treatment they were able to get me a...
23538
Melissa Berry
mjbpsu
Jul 28, 2012 5:31 pm
Interesting...even if he doesn't actually have cancer? ... [Non-text portions of this message have been removed]...
23547
candysandoval915
candysandova...
Aug 7, 2012 2:46 pm
hi, my name is candy. i never new there was a group on the internet for this. im 50yrs old. I'm 2nd generation with gardners syndrome. I have a fathe r who...
23548
candysandoval915
candysandova...
Aug 7, 2012 2:48 pm
hi, my name is candy. i never new there was a group on the internet for this. im 50yrs old. I'm 2nd generation with gardners syndrome. I have a fathe r who...
23549
candysandoval915
candysandova...
Aug 7, 2012 2:51 pm
hi, my name is candy. i never new there was a group on the internet for this. im 50yrs old. I'm 2nd generation with gardners syndrome. I have a fathe r who...
23550
Gary Murdoch
bailey392000
Aug 9, 2012 2:44 pm
Candy, Welcome to our group. I read your email a couple days ago & I wanted to respond... Firstly, I will keep Anthony in my prayers for a speedy recover but...
23551
Steve
sanddude1998
Aug 9, 2012 3:50 pm
Hi Candy, Firstly, our thoughts and prayers are with you and yours ... especially for Anthony. Also, want to welcome you to the group ... hopefully, you will...
23552
jmwpayne
Aug 10, 2012 10:00 pm
Welcome to the group. I will keep your son, Anthony, in my prayers. I hope that in time he can come to terms with this and move past his anger. Have you had...
