Hiya everyone, good to see you all again first of all.  Sorry we kind of fell of the face of the earth for a couple of years been kinda crazy. We moved twice, and I've changed jobs a couple of times.
    Tammie was diagnosed with a pair of aneurysms in the back of her head on Monday, and a coarctation of the aorta adjacent to an aneurysm due to a repair at age 6.  Dr. Steinberg emailed me back and will be looking at all of Tammie's Testing, and we have a follow up appointment with Dr. Woo on next Wednesday.  Here's hoping to the best, this ride is picking up speed in a hury.

Joe :o

Hi again everyone,
    Tammie had a follow up visit today with Dr. Woo at Cleveland Clinic.  She has surgery scheduled on June 11 to coil one of her aneurysms and he is going to take a closer look at the other and coil it if possible.  If he can't insert a coil into the second one then she will have surgery to remove it and Dr. Woo said she may very well have a minor stroke during the surgery.  He also identified what may be a third aneursym and is going to take a look at it.  He also scheduled  her for a STA-MCA bypass surgery on the right side on July 6 and an EDAS bypass on July 17.  We will follow up with Dr. Roselli after that to address her coarctation and thoracid aneurysm in her chest.  I've started the dueling dance with the insurance companies, and man do they get nervous when you ask to record conversations LOL.  Wishing for the best here and scared out of my mind, wish us the best of luck, and I will keep everyone updated.

Joe

Wow What a lot going on for you guys.How are you keeping it all straight? I will certainly keep you all in my prayers through all of this.Thanks for the update.Good luck with the insurance.
Mary Grace

Heya Everyone,
    Just getting a chance to get an update to you, been busy the last couple of days.  Tammie had two of her aneurysms coiled on monday and was home yesterday with no complications. YAY, but they verified the third aneurysm and found a fourth.  The way I figure is that we waited to long to address her moya moya and the elevated blood pressure and flow through the back of her head has caused the aneurysms so for any of you even thinking about taking the wait and see approach this is the least of what you are in for.  Dr. Woo said that the other two aneurysms are not inoperable, but that if he operates on them it will be a very high risk surgery for two small aneursyms, so he wants to wait and monitor them.  We will keep you updated as to her bypass surgery progress.  Thanks for all the support.

Joe

Hi Joe,

Glad to hear all went well. Please know Tammie will continue to be in my thoughts and prayers and we'll be right there with her in spirit.

You hang in there! Keeping you in my heart as well.

Mar

Hiya again everyone.  Just a quick update for everyone it's almost 1 am here and I have to be up early.  Tammie had her first surgery on Friday and is doing great.  Dr. Woo, Dr. Kelly (on fellowship from Stanford works with Dr. Steinberg) and the team did a great job.   Tammie's MCA was narrower than expected so her surgery took 6.5 hours and she was slow to come out from the anesthesia, but she's doing great.  They are going to discharge her today, so she'll have a whole 8 days at home before we head back for her left side surgery on the 17th.  She had a small TIA on the left side (non surgery side) that lasted about 1-2 min after waking up.  Other than that she has had no other problems.  I'll update you again as the week goes on.  Thank you all again for all of the support.

Joe

Oh My....you do have quite a lot on your plate! Is Tammy your wife or daughter?  

My husband is a Peds Cardiologist and does caths/stents at Rainbow Babies down the street, but knows all the Cleveland group very well.

You will be in my thoughts and prayers! I did my surgeries (STA-MCA) at Stanford last summer, but I am following up with my MM care at Cleveland Clinic with Dr Anthony Furlan (neurology)...he is a world class doc in his field!

Looking forward to hearing all is well with Tammy.....

Let me know if I can be of any help.

Smiles...Diane

Hiya again everyone,
    Diane, thanks for the reply and we will look into having Dr. Furlan do Tammie's (my wife) follow up care as Dr. Woo will be leaving Cleveland Clinic on the 25th of July.  Tammie's EDAS surgery is tomorrow and her spirits are high and she is doing well.  Here's hoping for the best.

Joe

Hi Joe,  My prayers are with you and your wife tomorrow.Please keep us up to date.
Sharon

Glad to hear Tammy's spirits are high....that is sooooo important. I will keep you and all your family in my thoughts and prayers for a seamless surgery tomorrow.

thanks for keeping us posted....I am FOLLOWING your updates!  : )

She has a bit of a bumpy road....but it does get a lot smoother with time! Hang in there!

diane

Good evening everyone,
    Tammie's EDAS surgery went well today, with one small change in the plan.  Tammie had no superficial temporal artery to lay on to the brain so Dr. Woo had to use the Post anterior artery instead.  She's in a lot more pain this time, and she just called me to say the nurses aren't responding to her pushing the call button so I may be headed back over to Cleveland to provide some direct supervision of the nursing staff.  Tammie has a CAT scan in the morning and should be home on Friday.  Dr. Roselli her thoracic surgeon is supposed to be getting in touch with us about plans to repair her aortic aneurysm and coarctation.  Thank you all for the support it has been wonderful.

Joe

Joe, You know what to do about the nurses and the pain. Put your foot down.

I am praying for you and your wife and take care,
  Sharon

Hi Joe am glad everything is going well for Tammie  :) I just got back from spending a month in the Columbus area, Seems like there is Quite a few MMers in Ohio (I am from Columbus, but now live in Florida) I had several tests done at the Cleveland Clinic a few years ago that is a wonderful place......You and Tammie are in my prayers also.......God Bless


Elaine Calvert

Hi Joe and Tammie -

Haven't been here lately, so just saw what y'all have been going through.  You are both on my heart and in my prayers.  Daughter Kate had double MM STA-MAC Sept. 2005 w/Dr. Steinberg.  We really liked Dr. Kelly, too.  Know that you are in good hands in Cleveland.

Hugs,

Cass in Dallas, TX

Glad to hear the worst is behind her! Now to recoup and get HOME!

Hopefully it will all be smooth sailing from here on....(and) with a little help from some pain meds... LOL

Smiles....Diane : )

Tammie passed away on 10/15/09 at 1150 am EST.  I have found that I have more friends now than I could ever imagine.  She was 37 and well on her way to 38, which was 26 years more than the retard doctor that initially diagnosed her with moya moya disease predicted she would live.  (never trust the doctor when he gives you a time frame it's called a practice for a reason)  Tammie suffered from a massive rupture of an aneurysm at the base of her brain and passed quickly and with little pain.   This great woman was able to prove how great she was even after her death.  She provided a chance for four other people to live through the donation of her organs, and as she always requested her brain will be studied by Dr. Gary Steinberg at Stanford University the leading expert on Moya Moya.  My appreciation to DJ can not begin to be expressed for this site as it has been an excellent resource and form of support for me over the years.

Thank you all
Joe

Joe, I’m so sorry!!! She was such a fighter and went through so much, God love her, and you went through so much with her. My heart is breaking for you right now, and I can’t find the words to tell you how sorry I am. What a beautiful gesture in donating. She will live in our hearts always. Hang in there Joe, and I’ll keep you close in my thoughts and prayers always.

Mar [smiley=hug.gif]

So very sorry for your loss.

Jody
(Lina's mom)

My deepest condolences.

I'm sorry, Joe.
Kim

So sorry this has happened, Joe.  Words are difficult at a time like this, but please know that you're very much in our thoughts and prayers.
[smiley=hug.gif]  Jill

I'm sorry very much, God bless you.

Paula

Joe,

My sincere condolences for your loss.

What a remarkable woman Tammie was. Many have already benefited from her thoughtfulness, kindness and generosity and many more will benefit through her contribution to research.

Please know you are in my thoughts and prayers.

Lore

My heart goes out to the family. Tammie sounds like she was an incredible woman leaving a legacy of life for others. There really are no words......

Stay strong
Mark (Luca's Dad)

I am so very sorry to learn of your loss.  Your wife sounds like a wonderful woman.

With Sincere Condolences,

Jennifer
(Ruby's mom)

I'm so sorry for your loss.
-Audrey