Eric, do you feel that your facial paralysis is due to the surgery involved in the mandibulectomy and reconstruction, or to the neck dissection? I had some of the same issues, from the surgery itself.....drooping lower lip, numb upper lip.....inability to smile or kiss...numbness and stoppage in my ear.....but it all came mostly back. I can't make a perfect "o" with my mouth, but other than that, all is normal. I had some issues after the ND, such as some damage to my singing voice bec. of damage to the laryngeal nerve....and some nerve damage resulting in Horner's Syndrome, which oddly involves eyelid damage, abnormal pupillary response, and lack of sweating on the affected side (very odd indeed.)

I am mostly interested in why you think you had the paralysis, because I am interested in having reconstructive surgery done for my maxillectomy, using the same fibular free-flap surgery.

BTW..how is your leg? and your walking?

Thanks. XO--Colleen

Elizabeth, I am sorry that this thread has been reduced to this by the way...welcome to the OCF boards I guess.

Colleen!! I love you of course and will answer any and all of your questions because you are you!

They compromised my facial nerve removing the damaged tissue caused by my primary tumor prior to inputting my flap. My surgeon told me they would have to "stretch the nerve" to get to all of the areas needed and there was a possibility of the nerve regaining function...to date no good. My ENT says there is no hope there.

My surgeon also told me that I'd likely have nerve damage to my tongue and lower lip due to the neck dissection procedure, also due to where my cancerous nodes were, size etc. I too have issues with my voice, I can't raise my voice or talk loudly.

The leg is weak, I haven't been able to run on it and still walk with a slight limp. I can do squats(weightless) but no calf raises. I managed a bike ride with the kids the other day however am paying for it now...dancing is a challenge as well.

Hope that helps Colleen, you rock, PM me or hit me on facebook if you need more info www.facebook.com/eric.statler

I did want to comment on the RND and Liz's intent of her post. She wasn't downplaying the side effects that may occur in an RND. Many here have had RND's and had little side effects. What Liz meant was that an RND is very similar to a facelift in many ways and the total time for the wounds to heal is about 3 weeks. Radiation, on the other hand, takes one month of healing for every week of radiation. Eric's situation is complex in that he received not only an RND but also a free flap and mandiblectomy which was subsequently irradiated. There can certainly be side effects from this and some may be permanent. His staging was advanced enough that the surgeon perfoming it appears to have been following the NCCN guidelines for treatment, particularly since there was nodal, bone involvement and debulking.

All of us respond differently to treatment and Erics tumor must have been very agressive for the surgeons to take such major steps to save his life.

I had radiation and chemo only and have neck cramps as a result. It also took 5 years or so to get my full voice back. So not having intubation or surgery is not a guarantee that you won't have some of these issues in the future.

Head and neck cancer is a tough disease and for certain the most difficult time in my life. Just the fact that it is located in such a delicate and complex area makes it very difficult to treat and recovery can be long and tedious.

Thanks for that Gary.All i was saying was that in the overall picture of his treatment Robins bilateral radical neck dissection and secondary tumour removal gave him the least amouint of problems in terms of the actual operation and his recovery.(Yes it was a breeze compared to radiotherapy)He was in hospital for 36 hours after the operation and came home with 58 staples in his neck which were removed after 10 days.He was back at work after two weeks with no side effects at first,but of course the bruised trigeminal nerve gave him heaps later on when it started to recover.

I am sure that if you have other major surgery concurrently it will give you a very different view of a neck dissection,but i wasn't aware that this was the question.



liz

Eric did make assumptions that we all read his signature line (and we should have) but we are all human.

But this thread has been hijacked from Elizabeth so let's get back to her questions.

My doctors recommended against an RND because of the potential mortality rate being increased due to the length of time of the surgery. I did not present with any nodal involvement and I also had a "moderately well differentiated" and "focally invasive" tumor. My head & neck surgeon was the one making the recommendation. It was all about "risk & benefit".

I have been working on new content for the site for rarer forms of OC and some pages on ACC will appear in the near future. Salivary gland ACC is rare and can't be compared to SCC.

An extract of my draft content:

This category of malignant tumors of the salivary glands is a diagnosis of exclusion, that is, all adenocarcinomas that do not fit into any previously described tumors of the salivary gland are classified here. The tumors are usually solitary and asymptomatic with 20% of tumors presenting with pain. About half of the tumors are fixed to the underlying tissue.

Verrucous Carcinoma
Verrucous carcinoma is a type of squamous cell carcinoma that makes up less than 5% of all oral cavity tumors. It is a low-grade cancer that rarely spreads to other parts of the body but can deeply spread into surrounding tissue. Therefore, it is important to surgically remove the tumor and a wide margin of surrounding tissue.

Minor Salivary Gland Carcinomas
Minor salivary gland cancers can develop in the glands that are found throughout the lining of the mouth and throat. There are several types of minor salivary gland cancers, including adenoid cystic carcinoma, mucoepidermoid carcinoma, and polymorphous low-grade adenocarcinoma. For more information about these cancers and benign salivary gland tumors, see the American Cancer Society document, Salivary Gland Cancer

Lymphomas
The tonsils and base of the tongue contain immune system (lymphoid) tissue that can develop into a cancer called a lymphoma. For more information about these cancers refer to the American Cancer Society documents, Non-Hodgkin Lymphoma and Hodgkin Disease.

ACC is defined as a primary glandular neoplasm demonstrating differentiation toward the terminal intercalated ductal acinar (intercalated) unit and exhibiting one or more of histologic patterns

The parotid is the most common primary site involved in up to 90 of cases , followed by the minor salivary glands [. ACC accounts for 7% to 17.5% of malignant salivary gland tumours. The reported age range for patients with ACC is 3 to 91 years and the female to male ratio is approximately 2:1. The average age range of diagnosis is 38 to 46 years, which is a decade younger than patients with other parotid malignancies. ACC is the second most common salivary gland neoplasm occurring in childhood after Warthin's tumor and pleomorphic adenoma and the third most common bilateral salivary gland tumor.

Thanks Gary.

I am going forth in surgery, it's on Tuesday the 30th of June, so please everyone just keep me in your thoughts that day. I really would appreciate it!

Will do xx

I had no problems with my neck dissection or the tongue surgery either. None at all until my teeth, were taken and the rads and chemo followed by the rad seed implants in my tongue.That's when my journeu really began and still is my main problem That isn't adding in this aneurysm that is being ready to be repaired very soon. I imagine people wish my mouth was paralyized at times. LOL

Sending lots of good thoughts your way Elizabeth!! Will be on the look outs for your posts, hope all goes well!!

Hi Elizabeth,

In my family we say noisy prayers...so I will add you to my noisy prayers list!!!