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Joined: Apr 2016
Posts: 74
Supporting Member (50+ posts)
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Supporting Member (50+ posts)

Joined: Apr 2016
Posts: 74
Hi everyone just went to Moffitt this month no cancer but pain from radiation fibrosis, can that really be so painful, cause I am in a lot of pain. Going back again tomorrow cause now the left side of my neck, ear front and back are hurting and an ENT looked in my ear last week after stating I have vocal cord dysfunction did not see an ear infection. But the pain is too much to handle. Needless to say my insurance has a large copay to get help because I am getting depressed. So my question is does anyone have a lot of pain from radiation fibrosis? Thanks

SCC 2005 floor of mouth and neck disection
SCC 2009 partial rt tongue RAD
PEG 2009
20 HBO treatments following surgery of three teeth and 10 more HBO to follow
2015 Diced food diet due to weak muscles long term effects of radiation
2018 Radiation Fibrosis of the jaw and neck, vocal cord dysfunction
Joined: Jun 2007
Posts: 10,503
Likes: 1
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,503
Likes: 1
Im so sorry to read about this! Sounds to me like you have had more than your fair share of post OC issues. The late after effects can be devastating to some patients. I found this info which may be helpful...

Late Effects Fibrosis

Best wishes with everything!

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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