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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


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
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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...



Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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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.


SCC stage II Partial mandibulectomy w. neck dissection- July 2005. Renal cancer w. partial nephrectomy-Jan 2004. Breast cancer discovered in routine mammogram. Successful lumpectomy, sentinal nodes clear, RT only-2008 Reconstruction of mandible w fibula free flap-Jan 09. TORS removal of begnin pappiloma from esophagus-2010. Masectomy,rt breast 2013.
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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


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: Nov 2005
Posts: 1,128
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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.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Sep 2008
Posts: 489
Good1 Offline OP
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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



48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: Nov 2005
Posts: 1,128
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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]


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
Joined: Sep 2008
Posts: 489
Good1 Offline OP
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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


48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
Joined: May 2007
Posts: 666
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Joined: May 2007
Posts: 666
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



Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
Joined: Nov 2005
Posts: 1,128
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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.


Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
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