Danny,
Those are the exercises that were given to John at the hospital. I think he gets discouraged with the progress too. But you guys don't see the tremendous strides that you are making. We as observers see a great difference. I encourage him to do the exercises everyday. I will think of you daily when he is doing them and hope you are too.Oh by the way did you look at the post on the Currently IN Treatment section? I hope Iastrega will keep us informed of her husband's progress.
Meredith

Meredith, as you know, my husband began this experimental program for his swallowing at University Hospitals in Cleveland. He just came back. He was part of a group of 10 or so patients who use the "electric stimulation", or "e-stim"; a device which emits a certain vibration frequency, which stimulates the swallowing nerves. While my husband saw that many people who had brain tumors or suffered from paralysis were greatly helped (one woman who couldn't eat anyting at the beginning of the 10 day was able to eat angel hair pasta very effectively). Unfortunately, it really didn't help my husband.

It was recommended to him that he to a "dilitation", or a throat stretch, in conjunction with the "e-stim", which he did. It was very painful for him. His throat had an aperture of 20 (I think this probably means 20 mm in circumference), and most normal adult esophagi or esophagal sphincters are around 60. His had shrunk that much because of the radiaton. They stretched his throat to a 38, and the following day, he did a barium swallowing test. It seemed to have shrunk from the previous day. It was then suggested to him, that he do at least 3 throat stretches (dilitations) within 8 days of each other, and preferably with the "e-stim".

My husband can't go back to Cleveland, and will do it here in NYC (where another swallowing specialist has recommended BOTOX injections to relax the aperture) or in New Haven.

Needless to say, he is very frustrated, and he is impatient as well. It was a very painful procedure, and it looks like this is just beginning. He was diagnosed April 1, 2002, finished treatment June 2002, and hasn't been able to swallow much of anything.

I'll keep updating you on progress reports.

Lastrega,
Thank you for your response. We are going to Moffitt Clinic in Tampa on the 31 of this month to see what they recommend. I will post our results for everyone. If they have anything new I will certainly bring it to the group.
Meredith

Lastrega and Meredith,
As you know, I am a member of our small family of non-swallowers as well. I appreciate your input. I have another swallow study on Jan 30th, and I too, will keep you posted about my progress and/or suggested procedures and I look forward to hearing about those of your loved ones.
I hope that today's formula delivery is the last one. Since it is a new year a new deductible must be met and for the first time I paid for the stuff myself: $620 for 10 1/2 cases...seems a little steep to me.

Best of luck on the swallowing...

Danny G.

Meredith:
When I was at my test I asked the doctor if there was anything new or different to help with this problem but she did not know of anything. I will go back in about a month, she said she would check with the other doctors for information. If I she comes up with anything I will let you know.

Mike D.
Diagnosed 06/2002, w/Laryngeal cancer 1st stage

Mike,
Thanks for asking and your concern.
Meredith