Letter to all....from LOTSOFKIDS

lotsofkids · July 27, 2006

your prayers and well wishes are greatly appreciated!

Today I contacted the biggest moyamoya specialist in the country. He is Dr steinburg at Stanford University. I will overnight my films to him sometime today. He has agreed to look at my case. I would do the first bipass on one side and then a week later a second surgery on the other side. Hey, a matching set! They said I would need to be in California for about 3 weeks in total.

I am excited to have a "real" expert on board as most docs are unfamiliar with this ds.

big smiles and hugs to you all........diane : )

lotsofkids · August 3, 2006

Now they are saying I am over 85% blocked which is a little more than they thought....but, hey...what's a little more when you are having sooooo much fun?

I will hear from Case Western (University Hosp tomorrow) and we will consult with Cleveland Clinic on Tuesday morning.

Meanwhile, I am already on the OR schedule for Stanford in three weeks, with Dr Steinburg if I choose to go with him. I am leaning towards flying to Stanford as this is so rare and not too many docs have experience with moyamoya.

I am still in good spirits and feel this will have a positive ending.....just a few frankenstein scars to flash to all my friends!

Keep me in your prayers....and warm wishes to all.....diane : )

diva · August 3, 2006

I wish you lots of luck with this-go with the top specialist. I am not sure where you live but if you found the top guy-use him.

May God Bless

jcbydesign · August 3, 2006

I can't even begin to tell you how badly I feel for you. I would think it's more like a hurricane that turned into a tornado and now you're headed into outer space!

I will pray for you that you don't have to have brain surgery. I know losing weight may seem irrelevent but it really isn't as less weight makes for better surgical outcomes and shorter recovery time.

Keep us posted when you can.

Teresita · August 3, 2006

:grouphug: :humble: :rose: :hug: :confused: :sleep :humble::humble:

Lot's of LOVE for you!!!

:grouphug: :humble: :rose: :hug: :humble::humble:

:humble::humble::humble::humble::humble::humble: :humble:

paula · August 3, 2006

Diane - funny how a support group of people where most members have NEVER met each - are all so close in spirit.

I think about you often, and the cross you carry.

((((HUGE HUGS)))))

Texblueyes · August 4, 2006

My prayers and hugs are out to you. What a journey you have begun. You have such a wonderful spirt with it. Keep up that spirt. People are learning from you I know I am.

vinesqueen · August 4, 2006

Meanwhile, I am already on the OR schedule for Stanford in three weeks, with Dr Steinburg if I choose to go with him. I am leaning towards flying to Stanford as this is so rare and not too many docs have experience with moyamoya.

Diane, seriosly go to the experts. Cushing's is Rare, but Moyamoya is RAW! :eek: I know that I had to go out of state to Portland to find an expert for me. OHSU knows more about Cushing's that the famed mayo Clinic.

Please don't mess about. There are times to be a training subject, and there are times when you just don't wanna d*ck around.

lotsofkids · August 4, 2006

You guys really make me smile! And that's a welcome distraction over here.

Chameleon (Donna) even called me on my cell phone today.....she was so sweet and we had lotsa laughs bonding through this. She too, had some serious health issues that had to be dealt with.

I am meeting with the neurosurgeon bright and early here at the University Hosp tomorrow. (but still think going to Stanford will be the better choice) I'll let you all know what transpires with that visit.

I liked what JCBYdesign wrote: I can't even begin to tell you how badly I feel for you. I would think it's more like a hurricane that turned into a tornado and now you're headed into outer space!

JCBY.....do you think it might be more like the series "LOST IN SPACE" ? lol

Anyways....thanks all of you for chiming in and giving me support and prayers. I look forward to seeing you guys.

As Paula said....funny how a support group of people where most members have NEVER met each - are all so close in spirit.

You guys are very dear......keep up the support to all your fellow LB'ers...we do need each other. We are a warm and special mix! I love you all!

big hugs and smiles....diane : )

paula · August 8, 2006

Hi Diane, just wanted to let you know that I was thinking about you.

Hope you give us an update soon. very worried about you.

(((HUGS))))

lotsofkids · August 8, 2006

I don't want to worry you or anyone else.....I know this will all be fine in the end.

The docs visit was confusing as he suggested the indirect bypass and the surgeon in California recommends the direct bypass (different risks)

The Cleveland University neurosurgeon said he didn't see good veins for the bypass....the California surgeon said he sees nice veins from my MRI films (????) The one in Cleveland does not have a lot of experience with moyamoya, although he is a very reputable surgeon. The doc in Cal has much experience with this disease, so we will continue to move forward on doing the surgery in Calif. I am scheduled for 8/25 and 8/29 for the other side.

Tomorrow morning, I will meet with a specialist in Cleveland Clinic and then...based on that.....(will it be a tie-breaker of docs? or more confusion?) we will finalize our decision.

BTW: ...I met a dear friend in the supermarket today after not seeing her for nearly 6 months. She started to cry hearing about my health problems.....I told her the surgery is going to be a "walk in the park"....you just have to add a couple of muggers following behind me to make the walk a little more dangerous! (But hey, I believe I am walking alongside a professional bodyguard so I am quite calm!)

It's all good.....everything is for a reason....I am seeing many good things around me already. I really feel blessed and when this is all said and done....my life's quality will probably have improved a lot. I will certainly re-prioritize the important things from the mudane routine time wasters that have filled my days. And hey....I know I can impress my kids friends with all my scars! Now, how many cool moms can do that?

Big smiles to ya...and thanks for your positive thoughts.....Diane : )

Just bummed about the steroids causing me to regain some of my hard earned wt loss since the lb of 5/23. I am slipping back on the wt....but I will need to remain on the steroids for a couple more months....darn!

But you guys better make me proud....I want to hear all about your success and svelt figures! : 0

loveulots17lov · August 8, 2006

o my god i am so sorry , i hope your recover gets better. my mom has just had 3 storkes because of blood pressure and diabetes, she was in the hospital for a week, they sent her home on blood thinners and she need to have sergery but she has started to got to therepy and she is doing much better, so hope therepy work for you. i pray!!!!!!!!!!!!