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butler's Message Board Messages

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gabapentin helps with the pain and cramping.  Stretching, massage and accupresur/acupuncture has also helped some

On Jul 11, 2018 8:22 PM MDyogi wrote:

Diana, thanks for that information.  My husband's cancer was in both tonsils, but more in the left so that's where most of the radiation was focused - and that's where the tingling is--he says it's like ants running up and down his head and neck, under his skin, which I just can't imagine how bad that must feel.  It seems to be getting worse - we can power through the muscle cramps and they myokymia he developed that pulls his muscles in all different directions with MM; the tingling doesn't seem to respond to anything.  I'm just so fearful about the future...  

Has he tried Gabapentin?  Most likely due to radiation causing nerve damage and ongoing scar tissue/lack of circulation

After many tries, I found that XyliMelts (OraCoat)are by far the most effective treatment for nighttime dry mouth.  The are OTC CVS and come in Mint or Mint-free good if the tongue is sensitive.  They adhere anywere inside the mouth, palet, gum line and stay overnight giving constant moisture and relief.  Please go et them asap- They pose no choking hazard and are soothing and comfortable

Just another finishline to cross!  

Congratulations to you both!

Sara in MA...near the Cape

What I didn't know until recently was that theXylimeltswere available and actually stick/adhere anywhere moist on the gumline, roof of mouth etc.  No choking hazard and work wonders.

Sara in MA

Diana,

Thank you for sharing your Dr. and resources with me.  I have forwarded the info to my sister in Vero.

Sara in MA

Harbour,

Trust your instincts and look for a new team if your insurance allows it.  I'm not certain of your condition, but it sounds like your Dr.s are giving you conflicting advise.  A second opinion never hurts, but bad decisions do.

Good luck

Sara in Massachusettes, USA

Hi Harbour,

May I ask where you live?  If people on this board are willing, maybe we could share where we're from as future resources may be available in your areas that others may not yet be aware of.  Sorry so cryptic, brain fog is bad today,

Sara in MA

Hi Diana,

Would you be so kind as to ell me your doc in Fl name?  My sister lives in Vero and needs dilation (not from radiation) but would appreciate any recommendations.  She has PsA, I've had BOT cancer 2016, and think I may be headed for a recurrence and live in MA.  I can't find a good dental team that knows anything about h & n isses regarding tooth destruction

Thanks,

Sara

RE: H & N cancer/ dental

by butler - March 21, 2018

Tufts and Medicare only cover HBOT for wound care and radiation is only considered once diagnosed with osteonecrosis is confirmed and not treated well with total extraction and jaw replacement(during)

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