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-   Lymphatic Malformations (also known as cystic hygroma and lymphangioma) (http://birthmark.org/board/forumdisplay.php?f=18)
-   -   Upcoming Surgery w/ Dr. Waner (http://birthmark.org/board/showthread.php?t=2669)

ksixbery 11-29-2007 09:47 PM

Upcoming Surgery w/ Dr. Waner
 
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Hello Everyone,

First off, Happy Holidays from Michigan! It's freezing here!

My hubby Rick, 30, was born with LM and has battled it his whole life. He has recently, in the last year, developed a mass on his airway. I freaked out! His airway??? This can't be happening. He is my life, my best friend, my husband, baby daddy, etc. Time to take action.

I finally stepped in and took this 'project' under my wing. My hubby was just mad about not getting any answers, so if me taking charge alleviates him having to think about it even 1 hour a day, I will do that, I told myself. Afterall, he does so much for everybody else.

After much trial and error with clueless doctor's here at U fo M, we went to NY on Sept. 11, 2007 to consult with Dr. Levitin and Dr. Waner. What a freaking relief to finally be in a place where you belong! I must say all the scrapbooks on the waiting room table were so inspiring to look at. At the same time, I had to stop myself from looking at them because I didn't want to be a crying mess when we saw the docs. Which by the way...they were exactly who we needed to take on Rick's case. Thank goodness for them!

Dr. Levitin did the scope to check out his airway and things looked ok. He was so shocked that Rick hasn't had to have a trach yet in his life. When you look at his MRI scans and the documentation behind his story, it is pretty amazing but so is he.

We are going back to NY the week of Jan. 28-Feb 2, 2008 for surgery with Dr. Waner/Levitin. That Monday he will get the trach put in place and Thursday will be the laser debulking. We should get to go home that Saturday. We are scared about the trach because he will be awake during the placement but it needs to be in place before any swelling happens from the laser treatment. He will have the trach for 4-6 months and have to go back for additional surgeries, we are told.

Rick will be off work for 6 months and feels horrible about it. We are a two income family and I told him, everything will work itself out. I am sure it is not easy, especially being a man, and feeling like your life will be on hold for 6 months. But we have an amazing daughter, 22 month old Belle. Not to mention, a huge work, family and friends support system. Everything happens for a reason :o)

If anyone can offer any guidance on what to expect with the trach or anything else...we would really appreciate it.

I know Rick would love to speak with any other adults living with this condition, so please feel free to email him: rsixbery@hotmail.com

Thanks for your support!

Kristi, Rick & Belle Sixbery

P.S. Family photo attached...aren't we cute? Haha!

SJB 11-30-2007 02:28 PM

I am so glad that you have found a good doc.. I have what they call a venous malformation on my tongue...I would love to go and see Dr. Waner but I really dont have the finances. I live in alabama so I would have to fly out there. Do you know if there is any financial help to help pay for airfare and the trip out there? just curious...if anyone knows please let me know

thanks
sjb

nickbar 11-30-2007 04:24 PM

Kristi,

Yes you are a cute family!

Good luck...you are in amazing hands! You have a great attitude and when things get tough...this will get you thru.

Keep us posted on your husband and surgery. It will be a rough road...but all worth his health in the end.

You are in my thoughts an dprayers.

Corinne

LilyGrace23 06-13-2008 04:41 PM

God bless!!! My son is 8 and was diagnosed at 2 with lymphatic malformations. he had a cat scan last week and we go to boston children's next friday. He might possibly have 2 of these tumors in his esophogus. your husband's story is the first so far that I've heard of these tumors growing in the throat.... best of luck and your in our prayers.
the West's

Cederløv 06-15-2008 06:06 PM

My son also have it in his throat.. This sickness is bad. He just got a infeksjon in this too.. My boy is 2,5 tears old.. and the doctor's soon don't now what to do.
And the doctors is sending his papers around the find some one to help us. he also have this down to his lungs, check (boot sides), Neck and under his tongue,, i think is everywhere.
I hope we can find a good doctor how can help us,, this sickness is slow beating us up.
Best regards From Norway.

nickbar 06-19-2008 12:58 AM

Have you looked at the physician's list under the Europe region. Nothing is listed for Norway...

I would consider emailing "ask the expert" physicans on the front page of the website. Dr. Levitin is a great resource and can help guide you to the correct specialist.

Corinne

Cederløv 06-19-2008 09:03 AM

Hello.
I have done that whit no luck.. but we will wait the doctor to find a good specialist, we have a very good surgeon but the face and throat is not his specialist,

Cederløv 06-19-2008 09:04 AM

Hello.
I have done that whit no luck.. but we will wait the doctor to find a good specialist, we have a very good surgeon, but the face ,throat and tongue is not his field,
Best regards Kurt

Cederløv 06-19-2008 09:05 AM

Sorry i don't now what happened.


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