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#134268 05-18-2011 01:36 AM
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david1 Offline OP
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Hi, it's been a while since I've been onsite. Last time was after radiation/chemotherapy treatment for base of tongue cancer 2 years ago. Since then I've had two recurrences and two surgeries. Most recently, a fairly extensive glossectomy two months ago. Now I'm trying to swallow & back on the peg for the third time, perhaps for good. (I'll update my signature shortly.)

Anyway, here's my question: what's the deal with the mic-key button? No one has ever mentioned it to me. I happened to see a reference in the responses to Ebert's blog and searched it out. It seems much less obtrusive than a peg. In fact I'd been wondering about inventing something like it before I found it.

Is anyone on this site using one? Any problems with it? Recommend it? Please, tell me more!!

Thanks all!

David

Last edited by david1; 05-18-2011 01:45 AM.

Stage 2 SCC right base of tongue. 7 weeks radiation & chemo with erbitux. Peg tube. Concluded radiation treatments 5.7.09. Two recurrences, two surgeries. Most recent, a substantial glossectomy, 3/25/11. PEG tube. Minimal swallowing ability, but working on it.
david1 #134278 05-18-2011 08:56 AM
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I had the g tube which was long and stuck out like a sore thumb when I would wear my shirts and I hated to tuck the tail in or tape it up because of the bulge. My youngest was always fascinated with it and she eventually tugged hard enough one day, that my stitches came out. The tube ended up leaking and I had the opportunity to get it switched to a Mic-Key button.

I loved my mic-key button so much more because it was very flush with my skin and I didn;t have to worry about having a long tail hanging down. I did have to put a dressing underneath because of the oozing.

One thing is you have to make sure you have the correct trac from your previous g tube, mickey buttons apparently are mostly used in children, I barely got one by the skin of my teeth. If you like to puree your own food then I would ask about the size, for some reason MDA only had tiny ones so feeding was a little bit slower.

I was told that the buttons only last for about 6 months, maybe you can stretch it to 9.

I never had any problems with it and would recommend it! I loved the fact that I could swim with it!!!! I would just put a large waterproof bandaid on it and go swimming, even though the GI dr said I didn't have to cover it, I still did--just in case!lol


Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
ESikon #134286 05-18-2011 11:02 AM
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Elizabeth has it exactly right. All the tube forums extoll the button. If you clicked on the Roger Ebert blog about feeding tubes, he had pictures of the gtube he uses but he also had embedded a You Tube video of a young man changing his own button.

The buttons do have to be "measured" unlike the tube. They appear to be much more convenient but the devil is in the details. The button has an anti-reflux valve in it so you need to use a special connector that "locks and twists open" the valve. No matter how big your button or tube is, the valve is only about 10 to 12 FR. You cannot use the mickey button without that special connector.
I wanted one at first due to all the raves, but the doctors at my CCC dissuaded me for two reasons: (1) I grind up 6 different pills a day to put down my feeding tube and they felt they would clog the anti reflux valve (2) they claim they have to replace the button every three months due to reflux valve failure while the tube lasts 6 months.
If you go to the button, please keep us posted. Almost all the children use only the button as otherwise they end up pulling out the tube. On my gtube boards, the adults all use a G tube and not a button based on their doctors recommendations with one exception. I like the extra security of being able to use the tube without the extensions if I had to since it just has a little plastic closure like on a beach ball so there is really nothing to clog and the few times pieces of pill stuck, you can see it in the plastic and easily flush it. But I have been seriously thinking of the button
If you try it, please keep us posted.
Charm

Last edited by Charm2017; 05-18-2011 11:07 AM. Reason: typos

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #134288 05-18-2011 12:00 PM
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Posts: 12
david1 Offline OP
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Elizabeth! I like the sound of being able to swim with the Mic-Key. Although this is my third time around with the PEG I've always had it out by summer. I've been wondering how to handle swimming with it.

I think I'm going to put up a stink to get a button (in spite of the issues raised by Charm - although I'm sure they'll come back and bite me in the ass, uh I mean stomach). You'd think they'd be able to manufacture an adult size version! What's with that!!?? If it worked fairly easily who wouldn't want it!? Hmm, maybe there's an investment opportunity there...

I'll keep you guys posted on my adventure.

David

Last edited by david1; 05-18-2011 12:01 PM.

Stage 2 SCC right base of tongue. 7 weeks radiation & chemo with erbitux. Peg tube. Concluded radiation treatments 5.7.09. Two recurrences, two surgeries. Most recent, a substantial glossectomy, 3/25/11. PEG tube. Minimal swallowing ability, but working on it.
david1 #134296 05-18-2011 02:33 PM
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David

Good for you. Bear in mind that my doctors do NOT put in very many buttons at all but lots of tubes, so as fellow human beings, they are comfortable with the familiar. I think that is the reason why everyone does not get a button, most all of us just go at first with what the doctor recommends, and they all know tubes. Don't forget, nobody whether a child or adult can start out at first with a button, everybody has to start with a tube which lets the stoma form. Plus this is not an irrevocable decision, you can always go back to the tube if you don't like the button.
The size of the hole in the child's stomach and the adult is the same whether it's a button or tube, so I don't see any investment opportunities. Plus a lot of ideas you may have are already on the market or home made. here is a link to some of them Oley bright ideas
Last but not least, you can swim with a tube. Our own ChristineB has gone swimming and she has a combo G and J tube.
I'm heading out to the pool this month myself.
Keep up that adventurous spirit and I may be joining the button brigade myself
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
Charm2017 #134298 05-18-2011 03:05 PM
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David,

My husband has the Mic-key. The intervention radiologist didn�t give him a choice and we didn't know there were other types. No trouble apart from when it was first put in; the first one was too short and a longer one had to be put in (pain so bad that Tim could not stand up straight and had to use a wheelchair to get across the hospital to the radiology unit) but this can happen with the other tubes, too. It�s the only feeding tube Tim has had apart from the one up his nose right after the jaw replacement.

It was put in almost a year ago. None of the literature that came with it says to replace it in six months. Crushed pills are not a problem, but blender liquefied food might be. We�ve never tried. The only pills that caused a problem were Prevacid, ironically from the GI doctor who did a recent dilatation. The time release balls clump. Also, be sure to tell the pharmacist about the tube, because gel caps can�t be used.

It has never leaked at all. It is flush to the skin. If given a choice, I would recommend you go with it.

Last edited by slash; 05-18-2011 03:06 PM. Reason: typo

Susan, CG to husband, diagnosed April 2010, age 56, non-smoker, no HPV
Mandibulectomy on left side May 2010 followed by 30 radiation, 3 cisplatin treatments.
slash #134299 05-18-2011 04:17 PM
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I have a J/G tube which works for me. In fact today I went to have it replaced. It lasts anywhere from 2 - 4 months before I need a new one. I like how I have a choice of 2 ports, one into my stomach and the other one goes in right past the stomach.

I went swimming against my doctors and nurses orders. The first couple times I swam, I wrapped Glad cling wrap around my mid section so water wouldnt get in. It worked ok but didnt block the water completely. So whenever I wanted to swim, I would just go without the wrap and take a couple quick laps.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
slash #134315 05-19-2011 03:25 AM
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david1 Offline OP
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Thanks Susan. This is good news. I'm calling my gastroenterologist today to see about getting one!

Last edited by david1; 05-19-2011 03:26 AM.

Stage 2 SCC right base of tongue. 7 weeks radiation & chemo with erbitux. Peg tube. Concluded radiation treatments 5.7.09. Two recurrences, two surgeries. Most recent, a substantial glossectomy, 3/25/11. PEG tube. Minimal swallowing ability, but working on it.
slash #134337 05-19-2011 08:57 AM
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Slash

Maybe it's an interventional radiology thing as the IR botched my first tube also. Does your husband uses the pump, gravity bag or syringes to put food down his tube ? I'm wondering if that makes any difference in how long a tube or button lasts.
Charm


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
david1 #134339 05-19-2011 09:09 AM
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Posts: 3,082
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David1

First, a belated welcome back to OCF. I hope you grace us with some of the clever wordplay and insights you put in your blog. You are luckt to be able to go to a gastro doc for your tube or button. I wish I could. So far I've gone to three different gastro docs and all three refused to change my tube saying that it could only be done in interventional radiology since it is not a PEG. ( worse, this put the kibosh on my efforts to get my wife to change it like in the You tube videos)
Ironic, I always hated PE in school and now the fact that my G tube was not PE (percutaneous endoscopic), really limits my options to just major hospitals (some small ones don't have an IR)for what is really just a routine procedure that thousands of mothers/caregivers do every day at home.
Hope you stay part of the OCF forum, you are a good writer At least let us know how your quest for the button turns out
Charm.

Last edited by Charm2017; 05-19-2011 09:11 AM. Reason: toned it down

65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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