| | Joined: Mar 2009 Posts: 7 Member | OP  Member
Joined: Mar 2009 Posts: 7 | Hi, I am from Karachi-Pakistan, and recently on Oct 14th 2009 had a Partial Maxillectomy and Neck Dissection. Would like to have some detail about device which is used for exercise of Mouth and Jaw opening after surgery. Any more information related to above would be appreciated as I am new at this forum. Before this surgery I had another one in 2001 for removal of vocal cord and Larynx, and a total laryngectomy, having a hole at neck for breathing Have a look at my website www.newvoicelary.org and suggest what I can add for Mouth Cancer, for information to people at our part of world Noor Ali
Lary since 2001. Now assist Patients and their caregiver related Head & Neck Cancer
| | | | | Joined: Apr 2006 Posts: 794 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Apr 2006 Posts: 794 | Dear Noor, There is a wealth of information on this website for sharing with other people. Go to the home page and do some reading, and you are welcome to use any of that information.
I, too, had a partial maxillectomy and a neck dissection. I used a plastic hinged device called a "Therabite." It allows the jaw to be forced open and held, while giving the user total control. The opening force is generated by the user's hands.
In the U.S., insurance generally pays for the Therabite if it is prescribed by a physician. It is ridiculously expensive otherwise.
If you can't get a Therabite, there are people who suggest using tongue depressors, stacked up, gradually increasing the height of the stack, to force open and hold open the mouth.
Please do something! Otherwise, you will be left with a mouth that will not open enough to insert your obturator, or get your teeth cleaned, or to allow someone to look down your throat.
I no longer use the Therabite device, but I stretch my mouth open as far as possible several times a day, sometimes using my hands to help force it open a bit more.
There are many comments about the Therabite and about mouth and jaw exercises. Do a "search" and then settle down to read for a while!!
--Colleen
Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
| | | | | 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 | Noor Ali,
Welcome to the best oral cancer website in the world and I want to thank you for bringing awareness about this cancer to all that you can.
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: May 2009 Posts: 132 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2009 Posts: 132 | Hi, Noor -
Even if you can't get something like the Therabite, you can use your thumb from one hand and forefinger from the other to hold your mouth open for stretching. I, too, had a maxillectomy, and must stretch every day to keep my jaw from being constricted by scarring. Just hold seven seconds each time, repeat seven times, do seven sets per day (that's one way to do it)!
Good luck with everything. You will find tons of great information on this website for sharing with others!
Chrissy
Stage 2 SCC upper right palate
Hemi-palatectomy and maxillectomy 5/28/09
Six teeth gone
IMRT x30 starts July 13. Completed 8/26/09
Carboplatin and Taxol x6 starting 7/14/09. Completed 8/25/09.
| | | | | Joined: May 2002 Posts: 2,152 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: May 2002 Posts: 2,152 | Hi Noor,
Welcome to oral cancer forum. I too had a total laryngectomy in August of 2001. I have a TEP so do not need the electrolarynx which is good since it doesn't work for me. There are only a few of us that have been on this forum that have had this surgery. Currently there is another woman Katrina053 who has posted in the AFTER TREATMENT section that is looking for others experience after this surgery. Maybe you can help her. She is having a lot of problems with swelling.
I hope you heal quickly from your latest surgery and take the others advice to avoid trismus. It can sneak up on you.
Take care,
Eileen
----------------------
Aug 1997 unknown primary, Stage III
mets to 1 lymph node in neck; rt ND, 36 XRT rad
Aug 2001 tiny tumor on larynx, Stage I total laryngectomy; left ND
June 5, 2010 dx early stage breast cancer
June 9, 2011 SCC 1.5 cm hypo pharynx, 70% P-16 positive, no mets, Stage I
| | | | | Joined: Mar 2009 Posts: 7 Member | | OP Member
Joined: Mar 2009 Posts: 7 | Hi Colleen,
Thanks for response, yes I do understand there is lot of information available at this website, but frankly speaking while reading first time, most of the things go over the head.
But after some time it is understandable well
As you mentioned about Therabite, I am familiar with its name, and had viewed it at webpage of atos medical USA
Just imagine if you feel it expensive, than how much more expensive it could be for me, leaving in third world country ?, where no Insurance or health care facilities are available compared to West ?
My ENT with consultation with Dentist have taken a mould for
OBTURATOR,and informed me that they will have it inside my mouth once I am well and healing is good
Noor Ali
Lary since 2001. Now assist Patients and their caregiver related Head & Neck Cancer
| | | | | Joined: Mar 2009 Posts: 7 Member | | OP Member
Joined: Mar 2009 Posts: 7 | Hi David, Yes it is a good website, and as I had been Lary since 2001 now have a good information about it, but now for Mouth Cancer (Partial Maxillectomy and Neck Dissection) would have to learn more and add at my website www.newvoicelary.orgSuggest some weblink and other information which can be added, so that people at our end, and around the world can get benefit Noor ali
Lary since 2001. Now assist Patients and their caregiver related Head & Neck Cancer
| | | | | Joined: Mar 2009 Posts: 7 Member | | OP Member
Joined: Mar 2009 Posts: 7 | Hi Eileen,
Thanks for sharing the information, that at this discussion forum there are very few who had laryngectomy surgery, and now also facing with the problems of Maxillectomy
I will see the section of AFTER TREATMENT, and look for KATRINA053 a lady and will be in contact with her.
If you also inform her about me, than it would be good
Noor Ali
Lary since 2001. Now assist Patients and their caregiver related Head & Neck Cancer
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