Copied and pasted this info from my records as is much easier to do this way. Really would like to know if anyone on board has been through this and if so, how are you doing. I am now 7 months out of surgery and still have several problems that really bug me a lot. Continue to go to MD Anderson every 3 mo for followup and will have a fine needle aspiration of small node on my thyroid soon.

Here is the info on my case :
This is a 63-year-old female with previous history of oral cavity squamous cell carcinoma, T1 N0 M0, that was first diagnosed in 2005 and for which she underwent radiation therapy and excision at an outside institution.
1. The patient noticed ulcerated lesion of the right buccal mucosa in June 2013 and underwent biopsy on 11/27/13, which demonstrated squamous cell carcinoma recurrent.
2. The patient was taken to the operating room on 02/05/14 for radical resection of soft tissue in the oral cavity, right hemimandibulectomy, right maxillectomy, right modified neck dissection, and tracheostomy by Dr. Weber, with placement of Synthes mandibular reconstructive plate by Dr. Martin, and reconstruction utilizing an osteocutaneous free fibula flap, with split-thickness skin graft to the donor site and application of wound VAC by Dr. Selber.

Postoperative Diagnosis:
Acquired defect of the right mandible, 7 cm long, and acquired defect of the oropharynx, 8 x 15 cm.

Operative Procedure:
Free fibula osteocutaneous flap with a single bone segment and skin island for reconstruction of the oropharynx and mandible with microvascular anastomosis and split-thickness skin graft to the left lower extremity for donor site restoration.

Currently T2 NO MX
Wasting of muscles of R Scapula with shoulder weakness and weakness to R tongue. I had 4 months of PT and ST and continue to wear a compression device to my neck area for lympedema of my neck. Have hearing problems with my R ear and chronic pain to my left leg at the donor site of the fibula flap.

Hoping I can find someone that has been though this and can share their experiences with me.

I haven't had the same surgery, Frankie, but like you have had recurrent oral cancer with two big operations. I'm sorry to hear that you have chronic pain and hope there is someone here who is a closer fit to your situation.

How is your speech, eating?

I have not been through what you have, Frankie.

Are the muscles wasting because of damage to the accessory nerve during surgery? I consider myself knowledgeable on muscle wasting after losing half or so of the muscles of the body.

HI there... Christine here has had a mandiblectomy and may be a close fit for your situation. However, I think maybe I can help a bit.

First of all it says you have wasting of the scapula/shoulder etc. This is definitely from the neck dissection as they cut the neck muscles during the surgery. I know you have been to therapy but my one question to you is... Do you do your exercises at home as well? It's all well and good to see a PT person once or twice a week, or even daily but you should be doing these exercises at home. It's hard work but you can regain some of the strength back. I visited PT twice a week. They gave me a set of exercises I could do at home too. So whenever I walked my dog I did them as I walked (minimum 2x daily) Maintenance is the key here. It's like being an athlete. Stop training everything goes to pot.
Now you've had radiation to that area I am sure so chances are the muscle memory is damaged. So you may have to do this daily forever. (use it or lose it... Right?) But over time you should see some improvement. It is a slow process but have faith.
Re the pain and swelling. Sometimes they go hand in hand. Swollen tissues can be sensitive and likely the fluid build up is pushing on healing areas. I was quite numb from my neck dissection - but I was also very swollen.
If you've had a clear scan (ONLY if you've had a clear scan) consider going to see a lymphatic masseuse. I waited until I was clear and then went for about 3 months 2x weekly. I did an abbreviated massage routine at home - these days my neck is really surprisingly good. I am still numb in certain areas (nerves have a very slow healing capacity and poor memory) but my neck looks normal and most importantly feels normal. Occasionally, I still feel a little swollen (often how I sleep is related to this) when I do I perform my abbreviated massage (takes a minute or two) and it goes away. It all depends on how you were rewired on the inside, but the massage even helps my tongue if its a bit swollen (go figure)
Radiation damages muscles it also impairs blood flow. My neck used to be as hard as a board. This is because my muscles had lost their elasticity from the surgery and rads. I underwent about 8 months of weekly acupuncture to my neck and we would rejoice when he drew blood. This means blood flow returned to the area. Without blood flow the muscle dies. Now my neck is soft and supple and about 99 % back to normal.
Finally ear pain.
Okay this is a tough one but with the surgeries you've had you've no doubt been rewired as well. I am not sure if you are on liquids and eating but I found that for a while after - because I was swallowing on one side (away from my damaged tongue) - I was getting fluid in my ear - it still happens some times. This would cause an earache as I think my inner ear canal would fill up. All these little holes in our head are connected. OR it could simply be residual pain from the surgeries you've had.

Despite the length of time from when you've been radiated to now you probably haven't healed completely from your radiation. I know it sounds strange but rads has long lasting and often a permanent impact on the area it is aimed at. So healing is an ongoing long term repair project. Kind of like osteonecrosis of the jaw. Why does it happen sometimes years out? Life cycle of a bone cell.. 25 years. Damage it... it's long term.

Hugs - and hope this helps a little.

Cheryl, all you say is spot on! The reason the accessory nerve needs evaluation is if it is cut during surgery, you will lose the sternocleidomastoid muscle on that side as well as the trapezius, levator scapulae. This prevents scapular rotation with intense pain on the inside edge of the scapula. Neuropathy or neuralgia from scarring caused by rads or trauma from rads/surgery allows full recovery even with prolonged loss of blood flow if you can restore the blood flow first, in all the ways you mentioned.

Oh wow ! thank you, thank you for all the good info ! Yes I can eat, I only had PEG for 8 wks only because they made me keep it that long, was eating long before it came out. I had PT for 4mo. 3x wk and yes they gave me the elastic bands to use at home for the exercises as well as using the light weight dumbells. I wear compression hose on my left leg as needed, mainly at nite when my leg bothers me alot. During the day also at times but also have an ace wrap for ankle support during the day. My neck is very hard also from the jaw bone area down abt half-way down neck and in the mastoid area under ear. My hearing is bad from the rads and now feels like cotton in my ear now...and it drains fluid when I lie on that side at nite. You are all right about the rads.....it is the gift that just keeps on giving and giving and giving, LOL ! I do still pocket foods in the right side of my mouth....chipmunk syndrome I call it....mainly rice and spagetti. My right arm had a terrible droop when i got home and a lot of pain. I had no idea what was causing it till a PA told me at the CCC during visit in May....I have 11th and 12th nerve damage even though they did not cut nerves, only moved them around a lot, according to surgical notes I have read. I did get massage when I was getting PT...no one told me I couldnt do it so I did, mainly because I was so miserable. I also use my compression device daily to my neck area. Oh and where they split my lip it is now numb from the center line of lower lip to corner of my mouth.

Sorry this is so long, trying to remember everything. Have not tried accupuncture on my neck....something I may need to consider.

Thank you for all your info and good wishes....hope to hear from you all as I move forward in my healing process.

the massage you got may not have been the right type. There is a specific kind. Lymphatic massage isn't practiced by everyone. Make sure if you go back to this it's by a certified lymphatic masseuse. hugs...

Wow, what good advice and info you have received. I've got the split lip thing. Drives me mad because I can't control my lips during drinking and some fluid inevitably ends up on my clothes. I've even gone to the extent of cutting tea towels in half to tuck into my neckline while eating and drinking. But I assumed it was because a nerve had been cut deeper in my mouth. Know nothing about nerves.

When I have a coffee in a cafe I wear a scarf and have a spare one in my bag to swap for the wet one. There's no way I can eat out because I can only handle soup and get that everywhere. Even with soup I have to take my dental plate out to eat. I'll have a better plate made for me in a few months and maybe there'll be some nerve regeneration but probably not I guess. It was cut because of scar tissue from my previous op muddying the waters.

At home I can eat many more things but make a glorious mess.

I'll be thinking of you and hoping we both make some small steps to recovery or at least major improvement:)

Alpaca, I loved this post from you. Just a genuine reply as to what eating is now like for you. I found it very inspirational and read it out to Kris. He too struggles with fluids dribbling out his mouth and down his chin. Or flying across the room.
I was so proud of him today. We were eating out. Usually he wouldn't have anything, I'd just eat alone. But today he ordered a soup. He couldn't get the spoon far enough into his mouth to deliver the fluid. He was making a " glorious mess". Undeterred I asked the waiter for a cup. We poured the soup into the cup and he managed to drink it without too much more mess. Why was I so thrilled? He ate with me. He also ate "normal" food. So wanting him to say farewell to Fortisip.
Thankyou,
Tammy

Glad you could identify with my eating probs! I'll send you a private message about the newly revamped (or being so) Head and Neck group. People want to reach out to Northland.

Frankie, with cranial nerve XI irritated, it may take a while to get the muscles going on the top of the shoulder and scapula on the side it was moved around. I hope the PT explained even if it hurts, you need to keep it stretched and iced as often as possible along with some exercise to keep the blood moving. That's the biggest challenge in preventing permanent atrophy. It may hurt for a while but you should get decent range of motion and reduced pain with time.

Alpaca... The nerve they cut in your lip will likely regenerate over time - just a longer time. Each cell in the body has a lifespan based on the type of cell it is. You may never get 100% but you may get close. It just takes longer for nerves. Eric statler here (he's in and out of this forum) I'm not sure how long it's been since his battle and surgery but he's started going for therapy and now able to move his mouth etc... Where before he wasn't. Kudos to you for troubleshooting and coming up with solutions. Hugs

Thanks Cheryl. Music to my ears. SLT is not encouraging about return of feeling but RO said feeling could return but might take about 2 years. I met a man the other day whose sense of taste came back after that time so as you say, the lifespan of cells.

I have to tell you every day my taste improves and i used to avoid bread because it was not only bad for you but hard to swallow. Now I can eat a sandwich or bagel if I choose. It's been 40 months since I finished treatment and this has only happened over the last few months. Patience and hugs