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Exercise to help with swallowing #195186
10-03-2017 09:45 AM
10-03-2017 09:45 AM
Joined: Mar 2013
Posts: 23
United States
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Pamela Bishop Offline OP
Member
Pamela Bishop  Offline OP
Member
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Joined: Mar 2013
Posts: 23
United States
Hello Folks,
I have not been on this site for about 2 years now as I felt too emotionally drained after caring for my husband. Good news is my husband has fully recovered and most remarkably, is EATING NORMALLY.
Sorry if this is a bit long but I wanted to tell you our story.
After treatment and two hospitalizations where he almost died (life support after getting Sepsis was the worst) he was still having esophageal dilations every 6-8 weeks! About 13 in all. Swallow therapy wasn't helping. Speech was fine. After visiting a quite renowned surgeon for a second opinion about the swallowing issue around September 2015 (although I'm not sure of the dates) we were told he would never eat again because the muscles weren't working, his nerves were dead and his epiglottis wasn't moving and he "might as well get used to it." (Needless to say this surgeon was an arrogant ... with a huge ego and thought he was the best thing ever!) My husband and I walked away from that appointment feeling so low and in such despair. When we got home, my courageous husband said "I WILL eat again, darn it!" And I got back on line and searched for anything I could find that would help him swallow again. What stood in my mind was that I had asked the question (when I was allowed to speak!) to the surgeon, "So because his epiglottis isn't moving, is THAT the reason he can't eat?" And his reply was "No, I've removed patients epiglottis before and they can still eat, albeit carefully." So.... I thought, let's get those muscles working....I found the "SHAKER" Exercise. Takes 5 minutes every morning. Within ONE week of doing that exercise, the Swallow therapist called all her colleagues in to show how Jack was improving. By November, just a few months later, he was starting to eat soft foods, liquid soups and such. By Thanksgiving he was able to eat his dinner! Soon after that, the Peg was removed. He had had the Peg for 2 years 8 months! Fast forward to today, and he's eating anything and everything and enjoying and appreciating every moment. He still does these exercises EVERY morning for 5 minutes, that's all. He does have to be careful, and cough up sometimes, but for the most part, it's an unbelievable improvement.
If any of you have any other questions or concerns, please feel free to ask me. We know it's a long, tough road you're all on, but there IS a light at the end of the tunnel. My love and blessings and healing thoughts to all of you, patients and caregivers alike.
Here is the link to Exercises that may help you. The SHAKER exercise is the one that helped Jack, maybe it would help others too.
http://www.livestrong.com/article/360308-exercises-for-epiglottic-inversion/


*** OCF MODERATOR NOTE ---- As with anything read here or elsewhere on the internet, use caution--- ALWAYS CONSULT YOUR PHYSICIAN BEFORE ATTEMPTING ANY TIP OR TAKING ANY ADVICE FROM PATIENTS OR CAREGIVERS WHO DO NOT HAVE MEDICAL DEGREES. ANY EXERCISE HAVING ANYTHING TO DO WITH A PATIENTS ABILITY TO SAFELY SWALLOW FOOD AND/OR LIQUIDS SHOULD BE THOROUGHLY DISCUSSED WITH YOUR PHYSICIAN PRIOR TO ATTEMPTING. MANY ORAL CANCER PATIENTS HAVE LIFE THREATENING HOSPITALIZATIONS DUE TO THEIR UNKNOWINGLY DECREASED SWALLOWING ABILITY AND SILENT ASPIRATION. A BARIUM SWALLOW TEST PREFORMED BY A QUALIFIED SPECIALIST IS NECESSARY IN DETERMINING IF A PATIENT IS ABLE TO SWALLOW SAFELY. ***



Pamela (57) Caregiver to husband Jack (68)
2-21-13 DX BOT SCC T2, left LN's affected, Stage 4, HPV+
3-8-13 PEG, Port for Chemo, Biopsy BOT
3-22-13 Start Cisplatin 1X Wk X 5-6 Wks,
3-25-13 Start Rad 1X Daily, 6X Wk, X 7 weeks, (42 TX)
5-11-13 finished Rad after 39 TX and 6 Wks Cisplatin
Re: Exercise to help with swallowing [Re: Pamela Bishop] #195604
01-18-2018 08:37 AM
01-18-2018 08:37 AM
Joined: Apr 2017
Posts: 79
San Jose, California
S
Stef H Offline
Supporting Member (50+ posts)
Stef H  Offline
Supporting Member (50+ posts)
S

Joined: Apr 2017
Posts: 79
San Jose, California
This is a very well known exercise known as the Mendelssohn maneuver. Before I began my treatment, I was taught this exercise, among several others, at Stanford.

This is why, as Christine B reinforces, it is so important to go to a hospital or program that focuses on head and neck cancers. You get a treatment team. I had two surgeons, two radiation oncologists, a nutritionist, a speech/swallowing therapist, and exercise physiologist, and access to both psychologists and spiritual advisors (I didn’t use either.)

I know not everyone has that option but if you can seek out such treatment (usually associated with teaching hospitals) please do.

Stef


Keep fighting friends!

Me -- currently 49 years old
SCC diagnosed 3/7/2017 at age 48
Staging SCC HPV+ T0,N1 primary unknown
PET 3/16, no activity, biopsies 3/23 benign
TORS surgery identified 2mm tumor in BOT (vallecula)
Cancer restaged T1, N2, M0
Begin 30 sessions of radiation (60 Gy) 6/13
Completed radiation 7/24/2017
1st MRI clear 10/23/2017!!
2nd MRI clear 10/17/2018!
Re: Exercise to help with swallowing [Re: Pamela Bishop] #196848
07-30-2018 09:53 AM
07-30-2018 09:53 AM
Joined: Apr 2016
Posts: 65
Massachusetts
M
msweet2995 Offline
Supporting Member (50+ posts)
msweet2995  Offline
Supporting Member (50+ posts)
M

Joined: Apr 2016
Posts: 65
Massachusetts
Thank you for still being here after 9 years out of radiation I have major swallowing issues which I will address with my oncologist.


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

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