damages from radiation

If you want to get some replies you need to edit your post.  In fact, just delete everything and start out by introducing yourself (if this is the first time you've posted here), and let everyone know some of your specifics - the type of cancer you had, the location, the treatments that you received and any other pertinent information.  Don't bother going into a tirade about doctors because it really isn't going to help you at this point.  Ask a question or questions here that are somewhat specific because saying "Anyone that can tell me anything would be greatly helpful" isn't going to get you many (if any) reasponses.  Just calm down and create a "discussion".

I get what you're saying about your neck. Mine is kind of screwed up too - stiff, sore, creaky and makes grinding noise when I turn my head.  But I knew it would be messed up before I ever started my treatments... that I would have to stretch my neck every single day in order to keep it from becoming permanantly immobile.  Your description of the pins, needles and stinging going from you neck through your arms sounds like neuropathy.  When my neuropahthy first showed up it did sort of the same thing - radiated from my neck and down my arms - but now it's settled in my hands and feet.  I started taking Gabapentin a couple months ago and it helps control it.  Have you ever asked about that?

If everyone has told you to get a new doctor, then maybe you should.

I'm sure we've all gone through the whole being "pi$$ed off at the world" at the onset of dealing with the aftermath of treatments, but I would say that just about everyone here, regardless of how easy or awful they have it, is dealing with their situation in as calm and  thoughtful manner as possible.  Being a basket case isn't going to help you.

You should go through and read some of the earlier posts here, that might sober you up a bit and make you at least a little thankful... and that might help you get some good advice here or elsewhere.

In 2016 my brother was diagnosed with squamous cell carcinoma of the neck. He was in stage 4. Luckily it was confined.  For two months he received chemotherapy four times a week and radiation five times a week. Before treatment he was advised to have 13 teeth pulled out in order to avaod jaw reconstruction. He did. Now the rest of his teeth are rotting away because of the radiation. He went to the dentist and will most lily have to have some implants and bridge work done, or go for full dentures. His insurance company (Medicare with a supplement) has denied him any help and are sending him the paperwork to start an appeal. Obviously it is difficult for him to eat. Has anyone ever experienced this problem and have had success with getting coverage through dental of medical?

Unfortunately, there are some facts that we know about head and neck cancer that we just are going to have to live with...  1)  Radiation and chemo are often the best way to kill the cancer  2) Radiation and chemo, while pretty effective at killing cancer cause a bunch of **** side effects that you will live with for the rest of your life.

They can cause neuropathy which is damage to nerves and can cause tingling and numbness...and there is little you can do about them besides physical therapy.  It can and often does damage your thyroid which can cause hypothyroidism.  Hypothyroidism is a pain in the ****.  It's easily treated with the little pill they threw at you but it takes some time and adjusting to get it exactly right.  Too much or too little and it can make you feel really, really crappy.  I'm struggling with that currently...  I don't know if my dose is quite right an I'm guessing that as I age it will continue to have to be adjusted.

It is also unfortunate that your doctors aren't helping you.  The only solution for that, though I know you don't want to hear it, is to find better doctors.  The best thing my doctors do is to set expectations.  They have told me flat out that there is nothing they can do as a general rule for the numbness...  Sometimes, we as patients expect too much from doctors and sometimes doctors, not wanting to disappoint their patients don't just speak the truth.  I too wanted my PCP to draw a TSH at one point and she wouldn't do it because I had only been on my synthroid dose for like 3 weeks and it takes 6 for the levels to stabilize.  When I finally had it drawn, turned out I was within normal ranges...

At any rate, good luck and hang in there.  I can sympathize...it's hard to be patient when you don't feel well.

Brandon

No excuse for Dr.s to treat patients the way the Poster describes. We all deal with side-effects from the Rads over time. I was ticked at my PCP when I recently told him my swallowing is getting more difficult and frequently cough when eating/drinking. Figure it's the scar tissue around esophagus opening, but he  just blew it off with advice on making adjustments. Almost 10 years out, its been 6 years since I went to the ENT, and might be my fault for not suggesting a referral. Still, the Poster's Dr.s, if what was written is true- no excuse for dealing with a C patient that way.

Kleberj said:

Teeth

In 2016 my brother was diagnosed with squamous cell carcinoma of the neck. He was in stage 4. Luckily it was confined.  For two months he received chemotherapy four times a week and radiation five times a week. Before treatment he was advised to have 13 teeth pulled out in order to avaod jaw reconstruction. He did. Now the rest of his teeth are rotting away because of the radiation. He went to the dentist and will most lily have to have some implants and bridge work done, or go for full dentures. His insurance company (Medicare with a supplement) has denied him any help and are sending him the paperwork to start an appeal. Obviously it is difficult for him to eat. Has anyone ever experienced this problem and have had success with getting coverage through dental of medical?

Kleberj,

Welcome to the H&N forum, where talk about teeth is something to smile about.  Not because Matt will make a lame joke, but because the teeth (your teeth, the cancer patient’s teeth) are front and center as one of the most discussed subjects on this forum.

I do not know if your brother’s cancer was confined? Usually, a stage IV diagnosis, points to a (sometimes small, sometimes large) spread of the cancer.  The staging also refers to the size of the “found” cancer.  For me it was stage IVa, SCC, BOT, 1 lymph node, HPV+.  It was the lymph node involvement and the size of the cancer which gave me a stage IVa designation. 

The rads are not guaranteed to promote the “rotting away” of your teeth.  In most cases, the prospective cancer patient has (sorry) “bad teeth” (for lack of a better description).

My rad oncologist spoke directly with my dentist and he gave the all clear for me to go through my 35-rad sessions and to keep all my teeth as they were healthy.  Now at 7 years post my teeth are still pulling their weight and chewing my food and smiling at the people I speak with and (knock-on-wood) they are all still OK.

Many, many H&N members on here do lose many if not all their teeth prior to treatments or a short time post treatment. Almost all, must go through 20, 30, 40 or more dives in a Hyperbaric Oxygen chamber prior to any dental work.

Success with acquiring dental coverage for all the post cancer treatment work which may “need to be done” can be tough, but some on here have prevailed.

A few H&N members who have mentioned their teeth are (the ones with * by their names you might  send them a PM) listed below:

Arndog64, Christmas, CLRRN, ** DebiL6043, ** Denistd, ** Fisrpotpe, ** Fritz, ** Lorig01,  Meinken, Micmill, Metro22, ** MickeyD, Nidociv, ** pj47,  Postive65, ** SASH,  ** Tracylynn72,  Wolfen.

These members have seen it  and done it all in the H&N teeth department. They can most likely point you in the best direction for information.

Matt

We get it.  Some people ask a question and then forget about this forum.  They may, or may not return.  It really doesn't matter because the subject matter will benefit many others suffering from the same dental issues.

No sooner do I pay for a crown then I need a bridge.  Two payments left and now a partial is being made for me.  I believe all people of a certain age deal with dental problems regardless of having rads or not. 

My rads have not affected my teeth yet. (6+ years out)  The problems I've faced are due to gum recession from flossing everyday like they told me to do.  My gums healed and pulled up tight, exposing too much root of my teeth.  No good deed goes unpunished.   My parents dealt with the same thing so it's hereditary IMO.

 Paying off a dentist for the rest of my life seems likely but it beats complete dentures so no complaints.  A lot of people here weren't so lucky and ended up with dentures after the rads destroyed their teeth.  See above list of those who have had issues.

5 months since Ihad radio therpy of the voice box got bad cough at night Also musac in my throat .Can anybody please tell me if this will go in time or stay with me forevar