PM and everyone that we have missed for the past few years,

     My wife was originally treated at age 6 (1977) for a coarctation of the aorta, at which time she had a major stroke during the surgery much to the doctors surprise.  The doctors struggled to diagnose what caused her stroke, and at age 8 believed she had an aneurysm at the back of her head.  The doctor opened up her skull and immediately aborted her surgery due to not recognizing her condition.  She was eventually diagnosed with MM at age 10.  Now at age 35 we have run into some very serious issues.  On January 26, 2007 she woke me up late in the afternoon, was working night shift, due to severe chest pains.  I was worried that she was having a heart attack, and rushed her to the nearest major hospital.  EKG, chest xray still nothing, so in she goes for a CAT scan.  She was the grand prize winner, thoracic aneurysm. 
  So with her history of MM, it was off to the races find a neurologist that has experience with MM, and a good thoracic surgeon. Thanks to DJ for the site, we found Dr. Woo in Cleveland, a 15 min disortation with his assitant about her history, MRI's in hand, and in walks Dr. Woo who says she is an excellent candidate for bypass surgery.
  We went to Dr. Reardon at St. Vincents in Toledo, and fired him not long there after.  Doctors should listen to their patients if not they need to find a new job.  We are now working with Dr. Roselli at Cleveland Clinic.

Yesterday Tammie had her angiogram with not only Dr. Woo, but also Dr. Roselli.  Unfortunately I sit at work now having accomplished nothing due to my mental state.  Dr. Woo reported to us that Tammie has 2 aneurysms in the back of her head and no suitable donor vessels for either the direct or indirect bypass surgery.  So we will be meeting with him within the next two weeks to discuss options and address her aneurysms.  As a bonus she was diagnosed with a new coarctation of the aorta just upstream from her thoracic aneurysm.  So both of these will be operated on after dealing with her MM and aneurysms in her head. 
     Dr. Woo has been great, he listens, and we will be sending her angiogram to Dr. Steinberg for a second opinion.  Dr. Roselli hasn't really spoke with us much yet, but the team work at cleveland hospital is evident and I would recommend both Dr. Woo and Dr. Roselli in a heart beat.

Joe

We won't be able to make the reunion unfortunately, due to saving all my vacation time for Tammie's recovery.  We are expecting anywhere from 2-3 surgeries this year, and hoping to start mid to late June.  We are contacting the study group today to get Tammie's kit to send in.  We are also going to ask if they would like one for each of our sons who are healthy as could be.

Joe

Hi!  Daphne is probably the one you know of who had a coarctation of the aorta (I know you from the NF board).   I wish I knew of someone in your area.

I would highly recommend Daphne's surgeon/ cardiologist team.  They were absolutely wonderful.   

Her cardiologist is so sweet, when Daphne had her strokes, she insisted that she stay in the cardiac intensive care unit, which is much nicer than the regular ICU (Daphne had her own private room), even though technically she was a neurology patient -  and after all the other doctors told us Daphne wouldn't make it, Dr. Tabbutt was the only one who thought Daphne would survive.  She actually sat with me for 30 minutes when I was so upset about Daphne and talked to me about other kids she'd seen who'd recovered from strokes -- and she's the head doctor of the cardiac intensive care unit, I'm sure she had a dozen other things she could have been doing.

Anyway, the cardiologists' name is Dr. Sarah Tabbutt and the surgeon's name is Dr. Thomas Spray, both are from The Children's Hospital of Philadelphia (which has the best-rated  heart center in the U.S.)

If you go to Daphne's website, at the bottom of the "Pictures" page, there's a picture of Daphne's post-heart surgery incision (today you can barely find it).  They were able to go in through the side, between her ribs, so there was no breaking the chest bone (which meant much faster recovery).  Daphne only stayed in the hospital about 5 days.

I am sorry that Cheyenne is having yet another issue.  I know she's already been through so much!  She reminds me so much of Daphne.

Please email me if there's anything I can do.

Jenny (mom to Daphne www.daphnestory.com)

OK, this is the last thing ... I promise!

I remembered something else I thought might be of interest to you.  After Daphne's surgery, Dr. Spray came out to talk to us and it turned out that Daphne had an abnormal coarc.  It was a much longer area than they'd expected because not only was the arch narrow appearing on the outside, there was thick, fibrous tissue inside.  They had planned on cutting out the narrowed area and splicing the two ends of the aorta back together, but instead the area they had to cut out was bigger than expected and  they had to add a graft (using material from a cadavor) to keep the integrity of the arch.  It just made the surgery a little more complicated, but otherwise it hasn't affected her.

I don't know if Cheyenne would have the same type of thing, but in retrospect I am sure that the fibrous-tissue that they found was related to Daphne's NF.