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Desperate for Help- Pain

DesperateDaughter
Posts: 3
Joined: Dec 2012

I am desperate to find some assistance for my Mum, who was diagnosed with Tonsil Cancer (Stage 4a I think) in September 2011 and is continuing to experience significant pain and disability as a result.

Mum had a neck dissection with her left tonsil as well as nodes in her neck and shoulder removed. She had 35 treatments of radiation which concluded early in December 2011. She experienced all the “normal” side effects during radiation- loss of taste, dry mouth, burnt skin, trouble eating/swallowing, mucus build up, nausea etc.... Luckily, she never needed a feeding tube, making do with Sustagen type drinks. She lost 15 Kg’s- and there wasn’t much of her to start with!

At present (12 months later) most of her taste has returned, however she still has a dry mouth and a “feral” taste most days.These lasting effects do not concern her anywhere near as much as the significant pain she experiences in her neck, shoulder and back. It also appears that this pain is getting worse not better, particularly over the last 3 months (12months after surgery).

She has done everything ‘by the book’- attending physio almost immediately after her surgery, continuing her 3 x daily exercises throughout her radiation, only stopping towards the end when she was too sick to do anything. As soon as possible she started therapy again, continuing to see physiotherapists and a chiropractor...She has tried accupuncture, yoga...She has been so consistent in doing EVERYTHING that she has been told will help.

In July she was referred to pain management clinic at the hospital who put her on Lyrica, which initially helped. An increased dosage since leaves her with a little less pain but feeling dopey.

After complaining again about the pain at a check up, one of the doctors at the cancer clinic began giving her cortoisone injections in the painful areas in her neck. This has not helped at all, even with repeat treatment.

She has spoken to this same doctor about further surgery (which he mentioned at some point) to see if they can ‘cut’ the band which appears to be restricting her movement and giving her so much pain. However they are reluctant to do this, suggesting that they inject the cortoisone directly into her muscles instead. She is having her first of these injections on Wedensday.

One other problem that she is encountering is that the doctors seem to think that she hasnt been doing her exercises etc, which she has been, religiously. They also seem to be stumped at why, 12 months on, she is still having so much pain. I am starting to wonder if they did a bad job in the initial surgery.

I have lost count of the treatments and solutions she has tried, the therapists she has seen, and as I said, it just seems to be getting worse. There is no quality of life for her with the amount of pain she is experiencing, and she still should have so many years ahead of her (She is only in her 50’s)....

So, I suppose what I need help with is the following:
- Has anyone else experienced this level of pain so far after surgery?
- Is this as good as it is going to get? Is there any hope for improvement?
- Has anyone had follow up surgery to help with ongoing pain? Did it work?
- What else could she try?
- Does anyone think it is worthwhile ditching her medical team and going to someone else- if so, who?

Any help, in any way, would be greatly appreciated- I hate seeing her in so much pain and I just don’t know what else to do to help.

Sorry that this is such a long winded message.

Thanking you in advance,
Michelle

Tonsil Dad's picture
Tonsil Dad
Posts: 488
Joined: Dec 2011

Hi Michelle, I also HAD tonsil cancer but mine was stage II. I was dx last
November and I finished rads in April and since then I have not experienced
any pain like what your mother is having. My taste and saliva are all out of
whack and the texture in my mouth ( gums, cheeks, tongue ) is now totally
different but I'm pretty much back to normal. I'm sure someone on here
can answer your concerns.
Where are you from? because not many people use the word "Mum" the
only people I know are from England who use it.....just curious.

God bless
Tonsil dad,

Dan.

DesperateDaughter
Posts: 3
Joined: Dec 2012

Thank you for your comments Dan.
I am from Sydney, Australia. To say the support network over here is limited is an understatement, hence my post on this site.
I am tending to agree with the other post about a new set of eyes and am thankful for the time and effort people have taken to respond, especially so quickly.

All the best with your journey, I am glad that you seem to be doing well.

Michelle

Skiffin16's picture
Skiffin16
Posts: 8087
Joined: Sep 2009

There are a few people on the site that are also in Australia, not sure if they can offer anything to help, but thought I'd let you know just the same..., you aren't alone.

Check out this length of where many members here live;

Where in the World Are You

Best,
John

buellman91's picture
buellman91
Posts: 32
Joined: Feb 2012

I finished tx in April of 2012 . I had SSC also in 2006. In both instances I had long term pain issues from radiation. My pain management doc has me on fentanyl. A fentanyl patch, Gabapentin and a new drug called Subsys which is a bi-lingual for "break out pain". These collectively are working well.

longtermsurvivor's picture
longtermsurvivor
Posts: 1800
Joined: Mar 2010

can sometimes be very helpful. I'm sure both of you are pretty frustrated. It would have been great if there were a simple diagnosis, and a simple therapy. Sometimes we are not so lucky. The puzzling thing is the distribution of this pain, which affects a pretty large area. Not one which would logically follow a problem with a single nerve, or a single scar....

So much of your immediate course of action depends on what your relationship is with the current treatment team, and whether you trust that they are continuing to devote their best efforts to diagnosis and treatment. If there is any question of this, then you should obtain an opinion from an outside source immediately. Even if you have a great working relationship with the current team, a new set of eyes will sometimes find a problem that the current doctors are simply overlooking.

It isn't wrong to talk about all this with your current team. If you tackle this in a matter of fact way, not a threatening or angry way, there shouldn't be a problem with a thorough discussion of all the alternatives. Sometimes the current team even has a recommendation on who to see.

wishing both of you the best.

Pat

Tim6003's picture
Tim6003
Posts: 1495
Joined: Nov 2011

but I am of the opinion if you are telling your current team your mom is doing her exercises and they do not think she is ..and it has been this long dealing with pain...then maybe another set of eyes / team is the way to go.

Pain is horrible....you must get remedy on this pain issue ....and like Pat (longterm) said, if you can approach your current team in a non-threathing and just professional way to get a solution, I'm sure they would understand and might could help.

Best,

Tim

Noellesmom
Posts: 1302
Joined: Aug 2010

My husband had 35 rounds of radiation, Michelle, due to hypopharyngeal cancer but no surgery was possible. He has permanent nerve damage and takes several types of medication several times a day for the pain. He uses a Butrans patch 24/7, takes Neurontin, Cymbalta and hydrocodone for severe breakthrough pain. He is 2.5 years out from treatment.

Why would they not consider nerve damage? I would think she is a perfect candidate. I think she is not getting adequate pain management.

DesperateDaughter
Posts: 3
Joined: Dec 2012

Do the patches and other drugs you mention help him with his pain?

Thank you for the information and support.

Noellesmom
Posts: 1302
Joined: Aug 2010

The pain medications have helped tremendously. There are associated side effects such as grogginess or dizziness upon taking but definitely the pain is better.

luv4lacrosse's picture
luv4lacrosse
Posts: 1392
Joined: Jul 2010

And do not let the Doc's drive this bus. I was fortunate to have a team that too was very proactive regarding pain. The best approach I think is to use an opiate based pain reliever such as Fentanyl delivered in a patch. it will take some time to find the right dose as you really only want to increase, and more importantly decrease in 25 Micrograms at a time. This drug can be delivered in a constant dose over a long period of time such as 72 hours at a time. Do this along with a combination of faster acting pain relievers to deal with the "breakthrough pain" you will most likely experience. This is not an easy process, and is filled with trial and error, but once you get it dialed in, it will pay you back forward 100 to 1. Having the pain issue under solid control will have a huge impact on your mom's mental state, which belive me, can wreck your life. I am currently battling a re currance to my lungs, and have struggled with the pain portion of my side effects from the chemo I am receiving. I now have this figured out, and my entire outlook on life is finally starting to head in the right direction.

Sorry for the soapbox, but in short, deal with this now, and deal with it with the mindset, "we do whatever it takes" to manage the pain piece of this journey.

Mike

donfoo's picture
donfoo
Posts: 1239
Joined: Dec 2012

Spoken with such clarity and authoritative news. I tend to tough out pain inducing conditions but your words I have taken to heart. Pl

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

This suggestion is a little dumb. It is meant to compliment the suggestions others have made, not replace them.

Does heat help? In a shower or bath? If heat helps even a little, you might want to try ThermaCare pads.

I don't think these pads will provide enough relief. However, they should be safe to use. Rick.

Mikemetz's picture
Mikemetz
Posts: 346
Joined: Nov 2011

One of the little known secondary side effects of HNC radiation is the development of cataracts due to the corticosteroids given to reduce pain and swelling from the rads. I found this out when my vision got blurry and stayed that way for several months. The opthamologist told me I had cataracts, and I almost fell out of the chair! He and another doctor told me that is was most likely due to the steroids I had during rads treatments. I've since had both lenses replaced. I have no idea what the dosage threshold is for this development, but clearly I went over it for my own self.

So, be mindful of this and always monitor what they are Rx for you--and do some homework when you are told they want to use a certain drug on you.

Mike

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I too developed cataracts secondary to steroids. In my case, I used steroid eye drops to treat a type of arthrits (ankylosing spondylitis) which causes swelling in the eyes. Without the drops, the pressure would have made me blind.

I must say that cataract is one of the easiest of surgeries. And when they're done, you can see. It's magic.

So. Do not use steroids unless you need them. Use the smallest amount for the shortest amount of time. But if you need steroids, they are not something to be feared. Of course this advice can be given for any medication. Do not use Cisplatin unless you need it. Duh! Rick.

ToBeGolden's picture
ToBeGolden
Posts: 697
Joined: Aug 2010

I too developed cataracts secondary to steroids. In my case, I used steroid eye drops to treat a type of arthrits (ankylosing spondylitis) which causes swelling in the eyes. Without the drops, the pressure would have made me blind.

I must say that cataract is one of the easiest of surgeries. And when they're done, you can see. It's magic.

So. Do not use steroids unless you need them. Use the smallest amount for the shortest amount of time. But if you need steroids, they are not something to be feared. Of course this advice can be given for any medication. Do not use Cisplatin unless you need it. Duh! Rick.

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