Guestimate/Average time before swallowing? - Oral Cancer Support

I know the drill, everybody is different, each surgery leaves different scars, results vary from therapy, etc etc
What I don't know is the actual experiences from OCF posters. Wed, april 15 will be seven weeks after my glossectomy and neck dissection and I still cannot swallow anything. My ENT follow up on Good Friday showed my epiglottis "frozen" with scar tissue and not moving. I do my speech and swallowing exercises but don't see much progress. No professional will hazard a guess as to when I could expect to swallow. My ENT recommended cancelling my Barium swallow test on April 29th since I'd probably fail that one also so I can glean that two weeks is too soon to expect to be able to swallow.
Just impatient - I can deal with the PEG, but would like to be able to do some "comfort" eating or drinking
So HOW LONG FOLKS DID IT TAKE FOR YOU?

I was about 2-3 months out of treatment before I even had my first swallow test. I was told my epiglottis was frozen, disfigured and showed little to no inversion. I was advised it was dangerous to take any food or liquid by mouth, even water. After 2 months of doing the standard excercises, I had a 2nd swallow test. I again failed, but showed slight improvement(enough for my PT to allow thickened water and purre'd food). At that point my speech therapist said I would probably see minimul additional benefit from continuing to do excercises alone, and recommended seeking out VitalStim therapy. She gave the standard caveat... that it was expirimental, not proven and benfefit may only be attributed to the 2-3 times weekly sessions of rigorous exercise with a therapist.
After 2-3 weeks of VitalStim, I noticed a marked improvement in my ability to swallow. After 2 months, I was eating 100% by mouth. I took a 3rd and final swallow test where I was told I still had some slight silent aspiration, but I did well enough for them to recommened removing the PEG tube. I had my tube removed this February, 8 months after completing treatment.

Charm,
I'm sorry I can't help you. I am however interested in the answers you get. I had my bi lateral ND on Mar2. I still don't swollow. I can manage water, sometimes. Everything else and it sounds like I'm drowning. I go to my first therapy appt. this Thurs. Now I spoke to the head of my local H&N sport group who happens to be a speach therapist. She is also the person that intervined and got me into therapy. She told me in an email that I should see improvement with in a few weeks. She doesn't know this but I am holding her to that time frame!
Good luck,
Amy

Kevin

thanks very much for the specific answers. I have checked out the VitaStim with my therapist who turns out to be certified by them but the hospital does not have the equipment. since I have 5 CyberKnife treatments after memorial day right up to June 1, I will wait until then to start those as the radiation will just set me back too much, Plus my ENT looked down my throat and say my epiglottis is "frozen" with scar tissue so I will be shooting for October or November to be able to eat something, Very depressing to keep filling up the bag and dripping Jevity, thank god I can use the tube for WINE
Charm

I think rob must have been lucky because he never had any issues with swallowing.A pint went down his throat two days after his surgery,albeit a bit slower than pre op and apart from a 2 week spell during tx that never changed.His problem was the pain in his mouth from the burns and also food because it stuck to the inside of his mouth.Hope you get some answers soon big fella xx

Charm,

To give a data point, I am 10 weeks out from radiation and cannot swallow anythig more than a small sip. Doc is saying wait 8 more befor he set me up for upper GI endoscope.
____________
mike, rt tongur scc w mets to neck, 2 tongue surgs, rt nd, 60 gy to oc and neck

Mike

Thank you. It's now been sixteen weeks for me since I finished my CyberKnife re-radiation, (and 7 months since the surgery). I finally got VitalStim going. After nine sessions, there has been a slight improvement but I will know better after my October 1 modified Barium swallow test. I have two more Vitalstim sessions (would have been five but had to cancel this upcoming week since the speech pathologist won't do it until my ENT sees me and concurs that the MRI was wrong.) I have not had an endoscope but will ask my ENT about it next Wednesday.
Still shooting to get rid of this PEG tube by Christmas.
Charm

Hi Charm- Wow what is VitalStim? I'm glad that its starting to help you. Stay as strong and positive as you are!

thanks misskate. I learned about VitalStim from the OCF board. It is the only FDA approved treatment for dysphagia (difficulty in swallowing). It uses NMES (neuromuscular electrical stimulation) via electrodes placed on the neck to make the muscles responsible for a normal swallow response contract. I teasingly tell people I am having "electro-shock" treatment to help me swallow although it is more of a tingling burning sensation rather than a shock. The device is just handheld and cell phone size with a plug for the electrode wires. I have been getting the maximum dose of 25 milivolts . It is somewhat weird in that you sit in a room and try to swallow over and over again while the speech language pathologist counts each "audible" swallow. I started out at 200 swallows a session (45 minutes) and am now up to 300. It has let me swallow some saliva but the real test will be on October 1 with another modified barium swallow test. I failed my first two before VitalStim and unfortunately there is no way to "Study" for this test.
charm

Well, I failed my Barium Swallow Test yet again. This makes three in a row. At least I could swallow one third of a teaspoon of barium without aspiration so I will endure another 12 sessions of Vitalstim and take another MBS in December. Of course since 1/3 of a teaspoon could not provide enough nourishment for a mouse, let alone a grown man - no food not even soft or pureed this year for me. Seven months and two weeks of nothing but Jevity 1.5 (and wine) down the PEG.
Now they think it was the extra 25 GY of radiation on top of the earlier 72 GY that has damaged the nerves that control swallowing. So October and November will be spent driving to the CCC twice a week, dealing with their parking and paperwork, and sitting in a room for an hour trying to swallow. I am up to 300 "audible swallows" but apparently lots of them are just aspirating spit and saliva into my lungs which apparently does not cause any health issues. Food however if aspirated would be life threatening.
Still it does beat the alternative of being dead, and we are saving some money on groceries as the insurance picks up all the jevity tab now that I met my $6,000 catastrophic co pays for this year. I have not given up hope for a Christmas miracle but don't have much faith in it either.
charm

Martin was quite lucky i suppose as he could swallow a little after about 1 month of the end of treatment, but he needed to do a triple swallow. He can now swallow much better 1 year on, and eats almost everything (sometimes with lots of water). But he does get cases when food gets stuck somewhere in the throat without him realising. He told the endoscopy consultant "I sometimes cough and a corn flake flies out of my mouth, it's very embarassing", "really a corn flake?" to which martin answered "oh not always a corn flake, sometimes it's a sugar puff that flies out!". He's mad! but I did laugh when he told me.

OK - I'm going for my second attempted esophageal stretch today. The one a month ago was not a success so I have not swallowed anything since March 2008. Wish me luck. Charm you should not be discouraged by my lack of recovering swallowing ability. We are all different and recover at our own pace - you knew this I just needed to say it. Take care.

Good luck on the stretching. Last week, my ENT surgeon reviewed the DVD of my 3rd MBS and concluded that an esophageal dilation would not help me. My VitalStim speech therapist moved my next MBS up to Nov 19th as I will have then completed 24 sessions.
It was discouraging to realize that the new 2.7 Million dollar NIH clinical trial on vitalStim type therapy explictly excluded patients like me for failing these eligibilty requirements as they indicate permanent swallowing damage.
[quote]# surgery to tongue if less than � of oral tongue or less than � of tongue base resected
# no floor of mouth muscles resected
# All primary tumor resections should predate the radiation treatment.[/quote]
I am already rationalizing why a lifetime PEG may be good:
no tooth decay, no eating "cardboard food" with no taste, insurance pays for my food, and of course, the ability to have Wine at happy hour. Good luck

Just a quick update: going to my 21st VitalStim session this afternoon and am up to 360 "forceful swallows" of "nectar". After this next MBS, planning on ditching VitalStim as I will have done 24 of them and all their literature as well as posters here indicate that if it was going to work, it would have worked by now. Here is the link to the NIH study I mentioned, even though it is using a different machine than the VitalStim - same principles. I can see now why they excluded people like me from this study
NIH study on swallowing

How was it Charm?

same old same old airkitty
I won't know until the next MBS on Nov 19th how I am doing.