So..Who needs some AMAZING GOOD news for a change?!?

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tag0620

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Nov 18, 2008
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175
Diagnosis
11/2008
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State
ut
City
park city
It's official! We're getting surgery on Jim's thoracic herniated disc!

It's taken almost 7 months of FIGHTING, but they believe that his als diagnosis WAS a MISDIAGNOSIS!

His disc is rubbing on and moving his spinal cord and each movement causes what the surgeon was calling multiple mini traumas to the spinal cord.

We go in first thing Monday morning to meet with another neurosurgeon...but here's another bit of good news...he's an endoscopic specialist. They think that he's the perfect candidate for the thorascopic surgery instead of the full open thoracotomy. They got him in for an immediate CT scan to see if the disc has calcified or not...but if it's still soft disc material...they'll attempt the endoscopic surgery.

We'll find out more Monday morning and I'll keep you all updated.

THANK YOU THANK YOU THANK YOU for your compassion, your thoughts and prayers, and your support in trying to keep my sanity!

(((HUGE hugs)))

Tracy
 
Tracy,

That's Great news!
I hope you and your husband are going to celebrate tonight!
 
That is incredibly awesome news! I am so happy for you both. It must be a huge relief to finally see the light at the end.

Take care,

Robert
 
That's fantastic! Best of luck; sending lots of good wishes and prayers for a successful surgery and a speedy recovery!
 
Tracy,

I'm very happy for you and your husband. Your tenacity has made the difference!

Zaphoon
 
That is wonderful news, good luck with everything.

Dana
 
You are one strong lady! GOOD LUCK! Hope all goes very, very well and he can regain what he has lost! Give him a big hug from all of us!
 
Thanks everyone!

In case you're curious...here's our trouble maker that caused our "als" diagnosis! It's the black bulge coming out to the right of the vertebre in the spine kind of upper/middle/right (?)

SCAN0001.jpg


You can see a bit how it was changing the shape of the spinal cord even back in Nov when this picture was taken!

All I can say to anyone who is not diagnosed yet is KEEP SEARCHING. We had the diagnosis..but we knew there were other things going on. Keep faith and be your own advocate!

We feel so blessed and want to hold out prayers and hope for everyone else!
 
This 'is' wonderful, wonderful news! :D
 
Absolutely the best news Tracy! Wow I admire your persistance --keep us in the loop as things go along.
Laurel
 
Glad to hear some good news. Keep us in the loop please.

AL.
 
Tracy,

This is the best news you and your husband could have gotten. I am so happy for the both of you. Your husband is lucky to have you.

TAKE CARE
Betty
 
WOW! That is so awesome! You kept fighting and didn’t give up hope and it sure made all the difference. Congratulations!

Take Care-

CB
 
Our surgery date is set!

Thanks you guys!

Our surgery date is set for 6/25!

Unfortunately, the disc has calcified...but...he'll try the thorascopic approach first, then if that doesn't work..he'll open him up a bit more and try what's called a mini thoracotamy, then if that doesn't work..the full open thoracotamy will be the last resort. We'll have about 5-7 days in the hospital and a 3-5 month recovery depending on the procedure.

He will 100% need a fusion done...but that's small stuff once they're in there!

We have to go in on 6/9 to have radiology map out his back and as an outpatient..placed a marker on the vertebre that needs to be operated on...because in surgery..a mistake can easily be made in picking the wrong vertebre if it's not marked.

Biggest risk is that the surgery could paralize him..but without it...he'll definitely be paralized..so it's worth the risk to try and fix it.

So...this 100% means that they think he was 100% misdiagnosed with als, otherwise we wouldn't be scheduled for surgery!

I'll keep everyone updated..we have lots of prep work and appts...but not only that...son's high school graduation, son's out of state college orientation, my 40th birthday, and father's day between now and then!

Tracy
Husband diagnosed limb onset als 11/23/2008, husband deemed misdiagnosed limb onset als 6/1/2009! Actual diagnosed calcified herniated disc T6/T7 causing trauma to spinal cord 6/1/2009, surgery scheduled 6/25/2009
 
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