ANA Discussion Forum
General Category => Inquiries => Topic started by: kerri lyn angel on December 19, 2006, 11:10:30 am
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hi was just wondering if anyone out there has a swallowing problem post translab. i had my surgery june 2005 and find that its getting progressivlely harder not to choke. i sometimes choke on my own saliva and swallowing pills is nearly impossible. have even had to switch to chewable vitamins like a little kid lol! it almost seems as if the left side of my throat muscles are not in sync with the right side. appreciate any info. kerri
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sounds more like a pre-sugery issue !.. did they get the whole tumor out? .. and have you taked to your doctor about it?
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I would definitley get with your Doctor. Mine was a large, but not huge tumor taken out translab, and they had to scrape nerves 10-12 pretty good, and were worried I couldn't swallow...it's either 10 or 11 that controls swallowing. I didn't and haven't had a problem, but if I did, I'd get it checked. Let us know!
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dear joef, definitely not a pre surge condition though may be unrelated i dont know. and no i havent spoken with my doctors about it or any of the other multitude of post an removal. moved out of the state and currently have no docs or medical insurance have to wait 24 months from date of disability to qualify for medicare and am virtually unisurable by anyone else. even if i was i couldnt afford it. leaves me very frustrated and is why i joined this forum. and no they did not remove the whole tumor. left a bunch in to preserve face. thanks for responding. kerri
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Kerri, I'm sorry to hear that....what a frustrating mess these little buggers can create. I hope that it gets no worse...I know there's some nerve functions that seem to actually get a little worse before they get better, so lets just hope that's what's going on. Where did they have to leave some? Do you know what nerve it's on and what nerves they had to disrupt to get it out?
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kerri, my neurotologist when discussing the translab option did say i could have swallowing difficulties... i end up with fsr as treatment.
I have had some swallowing problems post treatment mostly pills so now whatver i have to take in meds, if it comes chewable, it is now in my home....
W.
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Forgive me butting in here- some of the NF2s do have swallowing problems
due to the nature/location of the tumour (so, maybe connected)
if you want to drop me a direct note I have contact who some info on it
best regards
Tony
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hi Tony,
You are baaack! We've missed you!!!
Flier58
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I definitely had swallowing problems after surgery. They were even threatening a stomach feeding tube. Thankfully that didn't happen. All those nerves are right together so I would imagine that it is pretty common. In the hospital they put me on a soft to liquid diet. It got better pretty fast. The desire for that hamburger has amazing healing powers. Don't be discouraged, it definitely keeps improvings. Cath
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Hi Kerri Lynn.. The one point you brought up about Medicare Insurance after starting Disability is a very big sticking point with me... You want to talk about something being upside down ??!!! You are approved for disability benefits ( in my case, I am 100% permently disabled from muscular dystrophy) and you have to wait 24 MONTHS to be eligible for Medicare ?????!!!!!!!! If you are approved for disability payments you should automatically be eligible for medicare insurance..
It's like "We know you are disabled but you have to wait TWO YEARS before we will pay for you to see a doctor"...Do we have any lobbyists in the crowd ???!!!
*mumbling to myself as I roll away*.....
Tim
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Tim have you checked into the share of cost program? That is the stop gap set up for that 2 year wait. If you ask me it's a big joke but...it is going to pay my hosptial visit from last week.
It's def. messed up! Just like social security disabilty is awarded to a family where the disabled person with kids remarries a person with kids who gets child support for the kids from the bilogical parent. After 9 mos of marriage they take the payments allowed for the biological kid and give them to the step children. Seems screwed up if you ask me.
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yeah tim, our rules regarding most all of government institutions and programs are basically useless to people worthy of them and a piece of cake for frauds and scam artists! why anyone would deliberately choose to try to dupe the system is beyond me though they allow you such a pittance to live on. the 24 month thing really kills me as did the 5 month waiting period for benefits. seems to me that i recall my first paycheck about 33 years ago having money witheld for social security! :o cant understand why they make a person wait so long and im also told that 90% of all applications are automatically denied the first go around and have to appeal! what are people supposed to do in the meantime? hmm i wonder. what i think is that they try to make it so nearly impossible that most everyone gives up. its a sad situation and really needs to be changed. the only prob is that folks dont know anything about the system until theyre forced through circumstance to be part of it and then in their compromised position dont have the strength to start reform.
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Kerri,
I have trouble swallowing too. I am almost two years post translab. I take very small bites and chew only on the right side, my AN was on my left. I am an extremely slow eater now, because if I hurry I choke. I never had trouble with this presurgery. I have a very difficult time with soup and other thick liquids. I had an embarassing experience with soup in a restaurant about a year ago, so I don't eat soup when I am out. I sometimes have trouble with pills, I try to swallow and they end up "swimming around" in my mouth before I can get them down. And the pills I am taking are not any bigger than a birth control pill. I don't think I ever talked to my dr. about this, but when I was in rehab after my surgery, they were concerned and helped me learn to eat a little differently. I personally think this has to do with the facial paralaysis.
Denise
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Hi Kerri,
I'm sorry to hear you are having this problem. My daughter, Chelsea 18 years old, also had swallowing problems post surgery. She had a large tumor and we were told that this was a posibliity due to the size and location. She ended up with a paralyzed right vocal cord and some temporary nerve damage. She went 99 days without being able to swallow anything. They put in a feeding tube through her nose at first, hoping things would come back to normal soon but after 5 weeks they placed the peg tube. There are a number of things that the head and neck discussed as a treatment plan, one of which was injection of botox into that area that would help with the swallowing. Seemed like it would have been a pretty simple procedure that has a great outcome, but for her they ended up doing a more complex vocal cord surgery that would also help her swallowing. Unfortunatly, she had 3 more unexpected surgeries where she was intubated and that messed up the vocal cord surgery. Finally, after she failed her swallow study texts, her head and neck surgeon told her to go try to eat something soft like mac and cheese and if she started choking stop and try something else. He said a good trick was to put your chin down towards the chest when you swallow and that it's usually eaiser to swallow cold things. She tried it and plowed her way through most of the food in the deli case. Her first of two rescetion surgerie was 6/18/06. She stills eats slowly and with focus but is doing very well. I notice that she seems to choke more often on her own saliva. She had 6 weeks of radiation and there could be some swelling on the nerves that are still healing so hopefully that to will get better with time.
I would talk to a doctor though. There might be something as simple as those botox injections that might help you.
Chin to your chest. Take care......Michelle