| | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | OP  Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Stephen, you may want to try to contact William Dozier. He had a post a few months back about the Dynasplint.
ChristineSCC 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  | | | | | Joined: Jul 2008 Posts: 21 Member | | Member
Joined: Jul 2008 Posts: 21 |
Age 37, low grade mucoepidermoid carcinoma of the upper right palate 7/15/2008, Never Used Tobacco, runner (3 marathons!), Shorin Ryu Karateka, Husband, Father of three (8,5,3)... and does this mean I can go skydiving now?
| | | | | Joined: Aug 2008 Posts: 8 Member | | Member
Joined: Aug 2008 Posts: 8 | cancer base of tonuge and after Radiation could only open my mouth about half way. I went to PT but did not work. I excercise by extending my jaws 5 or 6 times a day at a count of 15 and I belive there has been some improvement | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Frank, thanks for your input, I appreciate hearing from someone who has been there. Ive been doing that for months. I start my physical therapy and speech therapy next week. I was only able to open my mouth about 2 tongue depressors wide now can probably do about 6. So Ive seen an improvement I think from the HBO and exercises. Still have a way to go before I cn open 1/2 way. I would be happy with that.
ChristineSCC 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 | | | | | Joined: Oct 2006 Posts: 383 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Oct 2006 Posts: 383 | Christine:
Hang in there, it will get better and will continue to! I was referred to a Speech Therapist who works side by side with my surgeon and she worked miracles for me. Very patient, made me work at it, but gave me some very effective exercises. It was like going to a gym and working any other muscles, at times painful, stressful, not fun, exhausting, but in the end, effective. I still do several of them a little more random than in the past but that coupled with a Biotene gum habit I stay pretty loose and function. I believe it's also helped my mobility with my tongue and definitley helped me with situating solid food and swallowing better. I still have my days for sure, but there's options and hope for improvement!
Best Wishes,
Steve
SCC right side BOT/FOM; DX 1-25-06; Neck dissection/25% of tongue removed 2-17-06. Stage 2 Recurrence 7-06: IMRTX35 & 3X Cisplatin ended 10-18-06. Tumor found 03/18/13; Partial Glossectomy 03/28/13 left lateral tongue. Nov. 2014; headaches,lump on left side of throat. Radical Neck Dissection 12-17-14; Tumor into nerves/jugular; Surgery successful, IMRTX30 & 7X Erbotux. Scan 06-03-15; NED! 06-02-16; Mets to left Humerus bone and lesion on lungs-here We go again! Never, Ever Give Up!
**** PASSED AWAY 10/8/16 ****
| | | | | Joined: Aug 2008 Posts: 8 Member | | Member
Joined: Aug 2008 Posts: 8 | I have been using a OraStretch for 4 weeks now and have seen a small improvement but need to understand will take a long time. You should ask your PT about getting this device.. | | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Thats good news that the orasure is working for you. Seems once your jaws tighten up its a huge battle to get them moving normally again. For right now Im kinda on hold.
Since last week my throat has been bothering me. I wasnt able to do HBO cuz couldnt clear my ear again. My throat became so bad I was struggling to swallow so I went to my ENT. I have some swelling in my throat and am now on medicine to fix it. If the steroids dont work by Friday, Im going to be stuck back into the hospital (for the 4th time since Ive had cancer).
Needless to say, there went the progress I had made with my physical therapy. My jaw, mouth and throat are all pretty sore so I havent been doing my PT exercises. I can tell that Im sliding backwards and there isnt anything I can do to stop this.
All I can say is ONE DAY I WILL BE BETTER! And it will be better than what I am now, it will be very close to how I was before. Im very determined that cancer will NOT ever get the best of me, I will prevail.
ChristineSCC 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 | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Christine,
Why is your mouth sore? Is that due to the swelling? What has caused the swelling?
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | OP Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Recently Ive been to alot of doctors for second opinions, they all must poke around my mouth and show their trainees too. I now feel a tiny fragment from what I think is the top L molar that was removed before chemo/rad last year. This has been irritated by all the poking around and also by doing physcial therapy to stretch my jaw.
Last week I had a hard time clearing my L ear for HBO, its always the L side that gives me problems. Anyway, I wasnt able to swallow as easily as I had been doing and noticed this progressively getting worse over the weekend. By Monday morning I could barely swallow at all. Could be many reasons, had to turn on the heat cuz it got so cold, started using my fireplace again, just plain old infection that went to my throat. Who knows.
My ENT scoped me and said throat is swollen and gave me predisone to fix it. Said it should work in 24 hours. Told me if its not better by Fri. then I need to go back into hosp. for IV steroids which is inpatient. Last time he gave me a deadline, I got stuck at the hospital for 10 days before they let me out. Needless to say, Im pretty miserable dreading another hospital stay since my throat hasnt improved much at all.
Now, since Ive skipped HBO and PT, my mouth is back to 4mm opening. Ive lost everything I worked so hard for and now probably will need to go back to the darn PEG feedings again. Im struggling to swallow chicken and stars soup. Also Im back to my 3000 calorie chocolate peanutbutter milkshakes too, at least my taste is here so I know what tastes good.
ChristineSCC 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 | | | | | Joined: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | So sorry but I hope things improve and you don't have to go back to the hospital.
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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