Doggies, I failed my modified barium swallow bigtime and will have a PEG "installed" tomorrow. Since January my swallow difficulty has increased even with the honey-thick and pudding-thick consistencies. Hoping that I had strictures in my esophagus that a dilation or dilations might help, I had an upper GI endoscopy. My upper GI looks great ~ love the colored photos ~ no problems there. The MBS showed "food" pooling in my vocal folds and slipping into my airway no matter what consistency and swallow techniques I used. My dysphagia is oropharyngeal. I am losing weight and am in a chemo clinical trial for mets to a hilar lymph node so I must get this situation turned around. I will have speech therapy and Vital or E Stim in addition to the PEG as I hope to be able to eat/drink again.

I had a PEG into my duodenum in 2005 for eight months during and after my initial surgery, chemo, radiation. It was the pigtail version. I used Jevity 1.5 at that time. I would love to hear from current PEG users about techniques, bolus with syringe vs. pump feeding, and ideas to help me be successful. I have reviewed a number of your posts and I am armed with some questions and more information would be much appreciated. I had very little guidance re my PEG in 2005. It had been placed by my ENT who was more interested in the big surgery! Your ideas and personal experiences re exercises and muscle stimulation would be super as well.

Zenda

My experience is only deal with a G tube although it's applicable to PEGs (a type of G tube inserted with an endoscope instead of using a flouroscope) except for insertion/replacement.

I had to work up to using a syringe bolus feeding. I started with the gravity feed bags. I also supplement my Jevity 1.5 with real food, the exact same dinner that my wife cooks for us, put into a Vitamix and syringed down my G tube.

I've failed four MBS tests - guess I need to study harder.
I wish you much better luck than I had with Vital Stim.
I also wish that this is just a temporary condition for you. The longer you have the PEG or G tube, the more you hate it.
Charm

Thanks, Charm. I recall how eager I was to have the PEG tube removed in 2005. I actually jumped the gun then and was not able to maintain my weight after it was removed. I had to take in far more calories than I had anticipated as I became more active. I actually am assuming (oops!) a PEG tube since I have not talked with the GI doc who will place it and he/she may have a better plan than what was done in 2005. I had a fair amount of granulation and oozing before it was removed. I didn't have a choice re pump/syringe/gravity in 2005 and started right off with the bolus and syringe. I do plan to use my Vitamix to supplement. I have really enjoyed that machine and it has actually stimulated my creativity in the kitchen ~ something I can't believe I am saying! Thanks for your response and well wishes.

Zenda

I just noticed the "trismus" in your signature line. I have had good success with the Therabite. I still need to use it daily or else my jaw closes up.
Glad you like the Vitamix, it's the bedrock of most blenderized diet people and works great for tube feeders.
Finally here is a link to the Oley foundation's Tube Tips page
It covers all the issues and will refresh your memory
TubeTalk
Keep posting with any questions as you work on winning round 2
Charm

Zenda, Im sorry you have failed the swallow tests and will again be using the tube. I have always used the feeding pump. I am unable to tolerate my feedings with the bolus or syringe methods. Ive also gone thru several different formulas as I had trouble tolerating a few of the more common ones. I have had success with two-cal 560 calorie and Implact with fiber, both are by prescription. I used to supplement with Carnation very high calorie. I would purchase that thru the Amazon link on the forum pages. That gives OCF a small kickback on any Amazon purchases.

There is a free Vita Stim swallowing study going on. Since this originally posted by Brian back in Oct 2010, there have been more hospitals added. So maybe this would help you.

[quote=Brian Hill]There is a swallowing trial going on at several institutions, and they primary investigators have asked OCF if we have anyone who might be interested in participating. Here is the information and contacts.

Boston University Medical center is currently conducting a multi-site (VA Boston Healthcare, Beth Isreal Deconess Medical Center, Lahey Clinic, Brigham and Women�s Hospital, Dana Farber Cancer Institute, New York University School of Medicine, Lenox Hill Hospital, Beth Isreal Hospital New York, Northwestern University, University of Wisconsin, Greater Baltimore Medical Center, and J. Phillip Citta Regional Cancer Center) NIH/NCI funded clinical trial entitled, �Efficacy of Electrical Stimulation for Dysphagia in Head and Neck Cancer Patients.� We are currently enrolling Head/Neck cancer survivors at least 3 months post-radiation treatment suffering from swallowing problems (known as dysphagia). Interested people should contact me for more information, or visit our trial website estimclinicaltrial.com. The clinical trial is 4 months long and includes a home-program for a new approach to therapy for swallowing problems.

Nicole Johnson
Regional Recruitment Coordinator
Boston University Medical Center
Department of Otolaryngology
820 Harrison Avenue, FGH
Boston, MA 02118
p. 617.414.1761
f. 617.638.7965
e. [email protected] [/quote]

Hi!
what is a therabite????? I have trouble with my jaw closing more and more.Dont know what to do!
Marianne

A therabite is a plastic device that is used to esercise your jaws. It is to help increase your mouth opening. They are very expensive devices. Deb (debandbill) has tried to get people to recycle their therabites. She gave her husbands to me and I passed it on to someone at my hospital. Here is the link. For more info you can do a search by typing therabite into the search bar on the top left. Anyone who has an unneeded therabite please consider donating it to someone who needs it.

http://oralcancersupport.org/forums...rds=therabite&Search=true#Post129783

My PEG is in place and I am using a syringe with Jevity 1.5. All is going well ~ my body is quite pleased to have nutrition and hydration!

Charm, I do have a Therabite and it is a great device. Tongue depressors have also worked well for me. The Oley Foundation is terrific for guidance and ideas from members. Like OCF Oley shows us that "one size does not fit all." What works for one may not work well for another, but there are lots of suggestions from those who are walking the enteral feeding path.

Christine, thanks for the information about the trial. The closest location is in the mid-West, but it sounds like a good trial. I will have speech therapy and Vita Stim here in the Phoenix area.

Marianne, make sure your HBO doctor or oral surgeon/ENT surgeon is supportive of your use of a Therabite or tongue depressors to increase your mouth opening. My docs did not want me to stretch my mouth until my osteoradionecrosis had improved. When a pan X-ray showed improvement I began stretching again.

Zenda!
thanks for the advice. Will do! Question: exactly what does a scan show when it shows that osteonecrosis has improved????

If there is osteonecrosis a pan X-ray will show dark areas where the bone is actually missing. My oral surgeon compared a pan X-ray taken 6 weeks after my HBOT ended with one taken before HBOT, and the new X-ray did not have dark areas but showed bone tissue growth as a lighter evenly colored area under my teeth and around my roots. I understand that use of the same X-ray machine is important when making comparisons and that good doctors want to read the original X-rays and do not want to see copies.