Posted By: chemeng swallowing prob., how long do I wait ? - 09-09-2009 03:29 AM
I had a partial gloss.,neck dissection and radiation + 5 cycles of cisplatin. Its been 8 weeks since my last radiation treatment. I've been on a PEG tube and virtually unable to swalow since about half way thru the radiation. The ENT doc sais I should wait 8 more weeks, ( a total of 16) and if there is no progress on the swallowing by then he'll refer me for some kind of scope that goes all the way into the esophagus to try to determine what the problem is. Depending on what they find dilations or a botox injectin to the UES may be indicated.

Is it reasonable to wait 16 weeks after teatment ends with no swallowing to get serious about it? Is it worth it to try to avoid the procedure(s)? Should I be getting a second opinion about this?

Mike, 53 yo, scc rt ant toungue, 2 nodes, excision 12/08, reexcised + rt nd 05/09, 60 Gy imrt + 5 cisplatin 07/09
Posted By: Karen Rose Re: swallowing prob., how long do I wait ? - 09-09-2009 04:25 AM
Mike

Most people who have had surgery and radiation/chemo receive assistance from a speech therapist following surgery and then continue on while going through treatments. That way the speech therapist can help with any difficulties that you might have as you progress step by step. Swallowing can be a major problem for some people. I have had a speech therapist working with me following all of my surgeries and treatments.

You mentioned that you have a PEG tube, perhaps the nutritionist/dietician could head you in the right direction to the appropriate person at the factilty that has been treating you.

I hope you can get some help with this asap, rather than having to wait for another 8 weeks.

Karen

Posted By: Ron H Re: swallowing prob., how long do I wait ? - 09-09-2009 12:36 PM
I agree with Karen. I started seeing a swallowing therapist at the beginning of my radiation treatment, before swallowing became a problem. She was associated with the ENT doctor and worked out of his office. The first tests were to have a baseline for the coming difficulties. Also I was given some tips to help.

Luckily, I was able to take in liquids all through treatment. But it was hard to swallow solid food for many months. Every food seemed to be an experiment to see if I could swallow it. Finally 8 month after treatment, I was taking in enough food that the feeding tube could come out.
Posted By: Charm2017 Re: swallowing prob., how long do I wait ? - 09-09-2009 01:41 PM
Consider asking your ENT to write a prescription for speech and swallowing therapy. I did not need either the first time round and it was not until the surgery for the recurrence that I lost the ability to swallow. The standard is to do a modified Barium Swallow test to confirm the problem (MBS also requires a prescription) and then start treatment. Sooner is better than later as you have intuited. I started within a month of surgery and while the speech worked, the swallowing has not. Hope you do not need it, but keep in the back of your mind VitaStim, which is a form of electrical stimulation to the swallowing muscles that I learned about here on OCF. I am now in the middle of 12 VitaStim sessions and have notice an improvement but not enough to drink or eat, finally keep swallowing as much as you can. This is very very important in recovery, Good luck
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