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Joined: Mar 2006
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Kim S. Offline OP
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Posts: 90
Has anyone had any experience with Dr. Robert Lorenz at the Cleveland Clinic? In particular the tubeless trach procedure or other alternatives for airway stenosis?
My Dad has now had radiation treatments three times and it has pretty much ruined all of his functions from the neck up.
Thanks!
Kim


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
Joined: Jun 2007
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Im sorry but since this forum has members from all over the world it may not be easy to come across anyone with info about a specific doctor. On a quick internet search I came up with a page from the Cleveland Clinic about the tubeless trach. Maybe this will help you with more info? This is the first Ive heard of it.

Tubeless Trach



Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Mar 2006
Posts: 90
Kim S. Offline OP
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Mar 2006
Posts: 90
Thanks Christine. I was just hoping that someone may have been treated at the Cleveland Clinic for anything related to this cancer or that perhaps they had seen alternatives to a trach.
My Dad has been through so much that the thought of going backwards so quickly is about more than he can take. The tube is still so horrible for him as it is. I just need alternatives.
His epiglottis apparently is so hard from all of the radiation that it does not move and is actually leaning backwards and blocking some of his windpipe. Perhaps I should post under a different subject.......or just want to know if you can live alone if you have a trach. He would not touch it the last time it was in. My brother and I shared all of the care.
Thank you again


Caregiver to Father:Stage III unknown primary; modified left side neck dissection 2/2006; 8 wk trmts of Erbitux 3/2006 with-37 radition treatments; 11.2010; biopsy of base of tongue results questionable. 9.2013 tumor on left side of tongue; squamous cell cancer. 10.2.2013 Hemiglossectomy(1/2 tongue removed) with reconstruct tongue using left thigh tissue;surgery included IORT.
25 additional IMRT radiation trtmts & 5 wks/chemo. Carbo & Taxol combo.NPO;100% PEG depend;aspiration pneumonia 3/2014
Joined: Jun 2007
Posts: 10,507
Likes: 7
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
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Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
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Its ok to continue on this thread. You have enough going on that where to post should not be overly important.

Im sure there have been others treated at the same facility. I was at the Cleveland OCF walk a few years ago and met several survivors who were in that area.

I only had a trach for a few weeks while I was in the hospital for my 2 month stay. It was removed before I came home. Even knowing everything I do, I dont think I could have done all the trach care myself. Is a visiting nurse an option the treatment facility offers? They might be able to come out to help your father with his trach. He also must be motivated enough to take care of himself. There is so many things to do as Im sure I dont have to tell you.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile

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