Other than it is awful expensive, does anyone have any thoughts or experience with the glossectomy spoon? One of my biggest issues with food is being able to get it back far enough in my mouth that I can flush it on down with water or something. My flap does not move so either I use a utensil or my finger to get it back far enough.

Opinions or suggestions appreciated.

Patty

Sounded good to me -- I might need one because the front part of my free flap failed and instead of moving parts I have only a crater up there.

Then I looked at the price -- $181!!!!! And that's the wholesale price -- I shudder to think of what the retail price would be. This company seems to have a whole line of very expensive stuf!

Clearly aimed at ripping us all off by means of Medicare or insurance!

http://www.alimed.com/ProductDetail.asp?style=80622&fprd=Glossectomy+Spoon&oid1=&oid2=

It would be a bit overpriced at $18.

Perhaps a regular spoon with some PAM...

You can buy an infant feeding syring in any drugstore for a lot less. Or use one for PEG tube feeding.
How about affixing a regular teaspoon bowl on an iced tea spoon handle? There may even be some Victorian era silverware that would serve the purpose.
I still have "the funny spoon" which I received as a baby gift. It was a regular teaspoon with the bowl coming from the handle sideways. It has been used by many children in the family since then and although it is silver, I doubt that it is worth anywhere near to $ 118. Of course being from the mid 20th cen it is only for right handed children.

I will have to checkout the infant feeding spoon. I don't know much about them.

Pete - You found the same site that I did and I had a good laugh about the price also. I was able to find one on Amazon for $161.00, but I think that $18 would be a more reasonable price. I have been trying to come up with an "invention" that would do the same thing. For now I will just keep putting the spoon in my mouth and turning it upside down.

Patty

Patty, I forgot to add that with my first free flap, I was able to push food from the front to partway back, so if I maintained a steady flow of food from the front, with occasional liquid to lube it all, that food would push the rear food down to trigger swallowing. All I really had to push with a fork, spoon or finger, or flush with drink, was the last part (unless I wanted to stop eating for a moment to talk).

That's going to be different this time because I have very limited mobility in front now.

Pete,

That sounds similar to what I am finding now. I have a little bitty part of my tongue way in the back to work with and the rest is sewn down flap. I had some pureed foods last week at therapy and I was able to move them with water. One bite was stuck up front and I managed to get it back and swallowed without making a huge mess which was a vast improvement. I realize that you don't know yet, but do you think that with part of your flap missing will you have difficulty with things getting stuck in an opening where the flap was?

Allegro has the spoon for $160 with $.95 shipping. Still too much. Maybe between the two of us we can devise something that works as well. I thought of using the syringe that I use for my PEG and cut the some of the tip off of it. My therapist is worried that I would have trouble controlling how much I push out into my mouth at a time. I think with practice that could be worked out. I also think that the consistency of the food would make a difference with this method. Really thick things might work better than thinner things.

Patty

Instead of the 60 cc syringe, ask your pharmacy for a 20 cc size or 10 cc-- More manageable and closer to the Glo$$ectomy $poon size -- Cost is free -- I know Safeway has them.

[img:left]http://www.neon-john.com/Files/files/RORT/Syringes%20%28Small%29.jpg[/img]

Pete

I love the visual aid!! I don't visualize very well on my own. That is a great idea too and I will try it.

The therapist was telling me that she believes that the American Cancer Society offers small grants to patients for these types of things that are cancer related and that would improve your life. I do not know if it would actually work for me so I would hate to spend anyone's money on one unless I knew it would work. I am still baffled by the fact that they charge so much for them. I am too much of an idealist I suppose to believe that people intentionally make money off of other people's misfortune.

Patty

Thinking about the syringe......
you could cut part of the barrel of the syringe off to make it look like the spoon. This may make it easier to load especially if the food stuff is not that liquid. Just make sure that you do not cut off to much so that the plunger pops out in front.

M

There's also a liquid dosage measuring tool that looks like a test tube with a scoop cut in to one end -- That might be fitted with a plunger (hmm, the stick with the green sponge on the end...) to do the trick.

They aren't making money off misfortune so much as ripping off the taxpayers... The misfortune is just a vehicle to cause the transfer of money -- It wouldn't cost that much if insurance or Medicare or whoever wouldn't pay it.

That is true Pete, if people did not pay the ridiculous price then they would lower it. I like the ideas that we have here and will give some of them a try. I am doing fairly well with the spoon and turning it upside down when I get it in the correct spot. If it is not far enough back then it is quite a trick to get the food to go down, but I am happy to say that I have been successful lately. I tried cottage cheese again last week and it went a lot better than the first time.

My therapist loaned me a no chew cook book to look at and some of the recipes sound good. They only make 4 servings too so I could eat some and then freeze small potions for later. I am trying to get interested in making things to eat so that I will start taking in more by mouth now that I am a safer swallower.
For now I still do mainly cream soups and things that I know I am safe with when I am home alone. I am training the dogs to call 911 if I choke.

Patty

My ex-wife is an RN and she sent this link to me:

http://dysphagia.com/maillist/2002-February/msg00084.html

This is what I was thinking of doing with a 20cc syringe.

Pete

I like your ex-wife.

I started to say that I can make anything with instructions, but that is not true. So many of the instructions assume that you have some mechanical knowledge and I truly do not. I seem to always do everything the hard way.

My passenger side head light was burnt out. I have a book that diagnoses and tells me how to repair things on my truck. I got it out, and the instructions read to remove the battery, then replace the headlight. I did. The only problem was that my battery is on the driver's side of my truck.

I will probably try a smaller syringe since one of my biggest issues seems to be taking too big of a bite at once. I keep telling myself "baby steps, baby steps". Much like your "patience, Pete, patience".

Thank you for sharing this - I say again that you are a wonderful man.

Patty

Jim,

I know what you mean....My wife gave me a deluxe gas grill some 20 years ago for my BD. It had all the bells and whistles at that time including a side grill and a separate bun warmer but came in a box that probably weighed 300 lbs. When I opened it, it contained like 2000 parts and the instructions were written in Chinesenglish and the only picture was the one on the box of the completed grill. That was by far the toughest and most dangerous thing I ever had to put together. Even to this day I often thank my wife for that BD present. In fact I think another heartfelt thanks are in order today.