This is my first post to this forum. I'm a 48 year old dentist with an eighteen year history of oral SCC. My most recent surgery (#5) was back in February, a radical neck dissection. The final path was such that XRT was indicated. The radiation was clearly the hardest thing I've experienced thus far. I'm now five months post-radiation, and am still struggling with pain, severe neck stiffness, xerostomia, and difficulty swallowing. I'm on my third round of PT, and am taking a NSAID BID (clinoril).I did not have an N-G tube or a PEG tube (in hindsight perhaps I should have). My surgeon told me recently that it could easily be at least one year before I feel a lot better. He (and my radiation oncologist)assure me that I'm doing well. Is there anyone out there with a somewhat similar dx and tx to mine who has had a similar post-op course? Has anyone benefitted from trigger point injections?

Being an anal retentive dentist, I want to feel better yesterday, and intellectually I know that's not going to happen, but I continue to struggle mentally with the slow pace of my recovery.

David Brown, DDS

Hi David! Sorry you have to be here, but welcome! What is NSAID BID(clinoril) & trigger point injections? Have definitely become familiar with the lingo around here, but those are new ones! Being an anal retentive entrepenuer, I can relate with your anguish also. PT was very helpful for me & I hope it is for you as well this time around. My dry mouth is a real pain in the ass & so is the stiff neck. The tip of my tongue always hurts, but I seem to burn it way too often with hot coffee also, which probably doesn't help matters! I can eat most things as long as I have something to wash it down. I hope for a fast recovery for you & continued good health & no new recurrances.Spelling? You been through more than your share of crap with this disease! Your friend, Erik

Hello David
Well you are a long time warrior !
You are descibing what most of the patients suffer from. The dry mouth will lessen somewhat but will likely always be problematical . Salivert spray helps some folks . Massage also appears to help with stiffness. There is also a machine named Vital Stim I have heard helps with swallowing .
Are you talking about cortisone injections? and are your anti- inflammatories in the same family as Vioxx ,Bextra?
See, you came on here looking for advice and now we are picking your brain... The time frame your Doc is giving you is pretty accurate..wish I could tell you otherwise.
Take care
Marica

Hi David,

Welcome to the neighborhood! I am sorry to see you have had to battle the beast again, even though it was quite a long time between bouts. I wish I had better news to tell you but unfortunately, you have a bit of time ahead of you before you will be feeling close to where you started. I just passed my one year post treatment anniversary and Saturday I had my first dinner completely without water until after I ate. It was just a few weeks ago I was able to gulp water and I was pretty excited about that. I was tempted to reach for the water but through intense concentration, I downed the 16 oz ribeye, the asparagus and shiitake mushrooms and the corn! I wanted to go running down the street kind of like Steve Martin in the Jerk when he saw his name in the phone book!

Ed

Hi David,

Wow, I'm really impressed that you are using this amazing resource!!! I'm a caretaker, mom of a 4 year old, and pediatrician...of all the resources that have helped me understand the healing process the folks here have been amazing..

So sorry you've been through so much...now to feel more comfortable...

First just to give you a general idea about our experience...My husband had and still has a good deal of pain after radiation which is improving in distinct increments. He had tonsilar SCC, T2N2, rad neck, chemo and radiation finished radiation 6/28/04...Now he is really exhausted at times and the pain comes and goes. He is a vice dean at a local univ so talking and attending meetings and working on the computer are actually "strenuous" for the head and neck muscles...eating is tough...thank goodness for gravy...he did had a g-tibe, but hated it (couldn't pick up our 4 year old, then 3 year old cuddle bug)...so it was removed in August and he lost about 25 pounds...but is holding steady for the last few weeks thanks to BOOST (which he HATED at first and GRAVY)

Very gentle massage and stretching seem to help...deep massage and vigouous stretching or pushing himself...Does NOT!!! At 5 months post radiation getting into a project such as cleaning the basement for an hour feels good, but he gets very sore and tired the next day...Eating still hurts ... and swallowing in the AM is tough...Oh and he too takes NSAIDS daily...which help a little bit

I notice every 3 weeks a good jump in what he is able to do, but somedays he feels just totally wiped... he keeps saying..."I don't know why I'm so tired..."

I'm so impressed by his strength and yours ... healing from radiation seems to need gentle and steady, steady pace to feel better...

I hope this is a little helpful...and have a peaceful Thanksgiving Day...

Take care,
Sara