Hi All,

I haven't posted in so long about my daughter. We have been struggling so much. Lindsay was diagnosed with gastroparesis a few months ago. Though it was undercontrol with medications. But, it wasn't. To make a long story short...Yesterday she had a gastric pacemaker placed. Hoping that this will give her some quality of life at such a young age. I toiled with the fact that surgery and RSD are not good. But, I had to give her a chance to live her life like a normal person. Not being able to eat was horrible. Anyway, we are at the Cleveland Clinic in Weston, Florida. We have been in hospitals for over a month now. I am tired and frightened and I am so sad for my child. I wish that I could take this from her. Just thought I would let you all know. I miss you all, but we have been in such a struggle in our lives.

I also wanted to throw this out...Her new pain management doctor is seeing more and more Gastroparesis cases in RSD patients. FYI.

Hugs and kisses,

Sandy

You and Lindsay are always in my thoughts and prayers...I sincerely hope she recovers quickly from her surgery.

please take care......xoxo. Sandy

Hoping Lindsey is feeling much better soon. I feel the pain in your words, my 17 year old daughter is struggling too. This is such a terrible condition and deep inside my heart I fear what she may be facing as she gets older and I cry every day. I feel so bad for Lindsey that on top of RSD, she now has this complication. My thoughts and prayers are with her and your family. You are a strong and wonderful Mother.

Dear Sandy and Lindsey,

I'm so terribly sorry for all that you have all been thru....My heart goes out to Lindsey.. I can understand, somewhat...I have Earlier stage of gasteroparisis...and Im too suffering with it...IT is just awful... My food won't drop into my stomach...Sandy...Iam so scared as this is an awful feeling.... I so wish your Lindsey was not at the clutches of this aggressive disease!!!!

My prayers are with you and your beautiful daughter......always!!!

So sorry...Kathy
Ing

Kathy,

If you are in the earlier stages you should look into the pacemaker. pm me and I will let you know the info. There is hope.

Sandy

Sandy,

I would love to pm you....I have many questions...this tummy RSD is certainly a horse of a different color....I will write , pm you in a day or so...

I am so incredibly sorry for the pain in your heart and your sweet dear Lindsey.....

love, Kathy

So sorry to hear things have been so bad lately, Sandy! I really hope the pacemaker helps Lindsay and improves her quality of life, she doesn't deserve this at all!

Give her a big hug from me and send her my love! Thinking about you both!

Dear Sandy -

Sorry to be late in replying. First, thank you so much for letting us know what's going on. Your sadness is palpable, and I guess when it comes to having major surgery performed on your beautiful children, the fact that Lindsay is (now) getting some of the best care on the planet is almost beside the point.

And if this just seems like yet another stop-gap measure, that's okay. You're now hooked in with the doctors who understand that CRPS - in its avatar as a disrupter of autonomic functions - does so as a thalamocortical dysrhythmia, not all that different from Parkinson's disease or depression (see, e.g. Thalamocortical dysrhythmia and chronic pain, Jones EG, Pain 2010 Jul;150(1):4-5. Epub 2010 Apr 14, ONLINE FULL TEXT @ http://www.rsds.org/pdfsall/JonesEG_Pain_2010.pdf) and when MCS or whatever therapy for the underlining disorder becomes available, Lindsay will be among the first to have access to it.

That said, as a parent of two teenagers, I get it. That all - or so many - or someone's hopes and dreams have to be put on hold for "the duration," to say nothing of the effect of surgeries in their own right on your child's beautiful body, is heartbreaking. (And my boys aren't even that good looking.)

But on this Mother's Day, allow me to say this about that: you have been incredible every step of the way. In my experience, I have never seen a parent more dedicated to the welfare of their child as you are with Lindsay. As exhausted as you must be, there seems to be a deep well from which you can always draw strength, as the circumstances demand. The most recent drive to South Florida being only one example. It's clear, before anything else on an untoward nature gets to her, it will have to go through you first.

So let's get one thing strait, as emotionally wrung out as you may be, you remain World's Greatest Mom. And for it, Lindsay is a lucky young lady.



Mike

Hi I am so sorry for all your daughter and you as a mom are going through. I know I am older but the sadness and toll this has taken on my mom is so hard. She is my hope and strength. It sounds like you are your daughters.
On the news one day there was a young girl who had a gastric pacemaker. She did not have RSD I don't think but I do think that the pacemaker helped her greatly.
Sending warm thoughts. Happy Mother's Day

My daughter is set to have a gastric pacemaker implanted in Dec 2012. I am looking for anyone who has been down this road!