Brain MRI reveals Deep Lobe Parotid Tumor

My journey with TN remains on a perplexing, twisting road laden with thorns.

I am currently taking Lyrica which has alleviated my most painful symptoms and had allowed myself the momentary privilege of sweet relief and emotional comfort that things were under control.

Last week, I fell into a deep, unforgiving pit in the road and am still trying to process all that has happened...

I finally visited my neurologist who agreed with the medication and treatment and ordered the standard Brain MRI to rule out MS and "other things" to complete the diagnosis and move on to simple management of symptoms. I was happy with the neurologist and her ability to relay information and she is truly a gifted physician.

Has Anyone Ever Told You?

After enduring the brain MRI, which is by all accounts, "not fun", I actually felt good just to get it out of the way. I am not claustrophobic in the least, but it was confining in the extreme and much self-talk required to endure the 30+ minutes. But then it was over and I left with my CD of the scans in hand. Mission accomplished. Check.

I expected the usual result - NOTHING. No MS, no brain abnormality, no anything as most TN patients experience. A few days after the scan, my neurologist called and said that was exactly the case -- no MS, no brain tumors, no neurological concerns. And then, the awkward, "Hey, by the way, has anyone ever told you that you have a right parotid gland mass?"

Ummm, no, you would be the first.

To say I was shocked is an understatement.

The usual questions:

  • Where again? Right Parotid...the salivary gland.
  • How big? 1.7 x 1.7 x 1.3 cm.
  • What do I do? Go see an ENT (Otolaryngologist) and have it removed.

Alrighty then,

Source of Pain or Additional Hobbling Stone in the Path?

Now comes the whirlwind of other doctors and more questions.

  • Is it cancer? Don't worry! About 80% are benign in the superfical parotid lobe.
  • Will there be scars? "It's great, you will get a mini-facelift out of it" says the ENT's assistant.

I see two ENT surgeons. First says, "tumor is in the deep lobe and rare so I am handing you off to another surgeon that I am comfortable in recommending". There is now a 50/50 chance it is malignant due to location.

RARE and in a tough location near the carotid artery...not the words I want to hear...EVER.

Now we are at the point where I have visited this second highly-recommended surgeon and feel that he is capable to cut, but has all the charm of an automaton. He should have limped in with a cane while chugging Vicodin. He is the one, the seemingly detached analytic surgeon who is going to cut a tumor out of my face and I am going to trust that he is kind and skilled and focused when he removes this tumor and will leave me with my ability to smile, laugh, kiss, and say "PFFFFT" intact. (The Pfffft part is of particular concern for this someone of sarcastic bent.)

Why Are You Telling Us This?

The main reason is because in some cases, you too may be suffering from this condition and not be aware. Jaw pain on most internet sites leads you to a recommendation of dental intervention or to fantastic sites like this one. The problem is that parotid tumors are a zebra in a world of dentists looking for horses. Most parotid tumors are painless. Most are visible under the ear or felt in the throat when swallowing. For that rare person (those annoying zebras), the tumor is deep and hidden and involves the facial nerve. Mine would not have been noticed until it grew far larger. My particular Brain MRII barely caught sight of it at the lowest range of the scan. It is the size of a peanut and appears to have clear margins. All good signs...but, what if? What if I had listened to the "wait it out" advice and not pushed?

My surgeon does not believe this tumor is the source of the TN pain, but merely "an incidental find". He also questions the TN diagnosis, but it doesn't alter the choices I have to make or my desire to treat the pain with Lyrica as needed. Logically speaking, I say what are the odds that I would have a deep lobe parotid tumor on the same side as my nerve pain, and yet, they are completely unrelated?

All the questions that I have will have to be answered during and after surgery. No pathology report back until a week after surgery and I imagine many weeks or months may pass until I know if this tumor is the source of my "TN" pain or merely another gift on the road, like a free car wash with fill up.

I Need a Rest Stop!

Pending insurance approval, I will be scheduled for surgery in January. I face a 50/50 chance of a malignancy. It is a harsh reality that I honestly do not wish to endure, but this is the road I am on and no exits appear.

As a courtesy and in a moment of weakness, I told a close family member what was happening. I wish with all my heart I had not. There are some things in life that will always remain true. If you reach out your hand and someone always slaps it, you learn to put gloves on or hold it tightly by your side.

So I feel safe in typing this to complete strangers in the hopes it will help some...that you understand that a woman cares about silly things like 8 inch scars on their face, permanent loss of feeling in their ear lobe, and the potential that their face will permanently droop on one side. Pardon my pity party. You are my venting space. Then I will tuck it away in its proper place to continue on to the Inn-n-Out Burger joint on the road to say, "WHAT THE HELL, Give me that double-double!!"

Park it, SISTER!

So I am pulling over now to shout at you, just in case you need to hear that the following symptoms may mean a salivary gland tumor...

  • A lump (usually painless) in the area of the ear, cheek, jaw, lip, or inside the mouth.
  • Fluid draining from the ear.
  • Trouble swallowing or opening the mouth widely.
  • Numbness or weakness in the face.
  • Pain in the face that does not go away! (emphasis mine)

(Symptoms credit: http://www.medicinenet.com/salivary_gland_cancer/page2.htm)

In my intenet searches, I never encountered this possibility when specifically seeking information on jaw pain or face pain. Now I am hoping that you will have one more piece of information that could potentially lead to proper treatment.

Blessings to you all on your continued travels.

Dear SweetAcacia,
Thank you so much for sharing a part of your personal journey during a time of scary questions unanswered, for the benefit of others.
Your strength shines through your words, I have no doubt that you will face this journey with grace and much support from all of us! Vent away! We are here for you, you can always message me as well just to chat.
Although I’m sad to read of this discovery for you and all that it may entail, I’m so happy that it was found and that there’s a plan in place.
One moment at a time, deep breaths, along with faith and hope and a few stops at the burger joint! :wink:
Btw, you are a fabulous writer.
I will keep you in my prayers and hope that you will keep in touch to let us know how you’re doing?!
Take care of you Sweet Acacia, I’ll be thinking of you…
((((((( hugs ))))))) Mimi xx

TY for the kind comments and all prayers on my behalf. I appreciate the sincere concern that is offered here and will keep everyone posted.

Thanks TY for telling me your story in a very entertaining read, on an awful subject. I just smiled all the way thru your discourse!!( I was going to "angst"... but did not want to offend you... !!)

I wish you all the best and will petition all my dieties for your safe passage thru this.

I realise often people do not want to hear of other's experiences in similar situations because it can seem to detract fromYOUR problem.. my partner had the same problem (pariod gland tumour). She had it removed by a surgeon like yours... no people skills, almost rude. But she did a top job.

Incised from about the front of her ear following the cheek / jaw line down a way. Folded the flap of skin back, removed the offending item. I picked her up the next day - all ok, no problems besides an ear clogged with blood. The growth was not partcularly malignent, if that is a classification. Better out than in anyway.

She was warned of the attendant risks of surgery as you have been. She never looked back, and you could not see the incision at all.. the surgeon specialises in this type of work, like plastic sugery.

I tell you this just so you know another's story... I just hate it when someone tells me " You'll be all right, so and so had that operation, and now they are just wonderful -don't worry..." . Yeah!!! I wouldn't worry if it were YOU having the operation not me! Spare me your sunshine and unicorn homilies!!

All the best to you. Craig.

TY for your response, Craig. I appreciate it very much. It is always encouraging to hear that the scarring is minimal and no recurrence. Warming to the concept that I will survive all this and not sound like Elmer Fudd. :)

Acacia, as a peripheral observation, 18 years of reading in the literature of face pain leads me to believe it is unlikely that your TN pain is directly related to the rare parotid tumor. Of the cases unrelated to dentist error or whiplash injury, the majority are found to be associated with vascular compressions in the area where the 5th cranial nerve exits the brain stem -- well removed from the area of concern in this tumor. If your surgery doesn't help the TN pain, it at least should not worsen the issue.

Also peripherally -- I have some small personal understanding of the sort of family dynamics you relate. Part of the influences that have led me to offer much of my time in support to facial pain patients, are the outgrowth of having grown up as a physically battered child. I have very little memory of my early childhood and what I do recall has some horrific aspects. My way of coping with such a history came to include a strong personal commitment to the principle that no person is an island, nor should any child EVER be abused or suffer isolation as an adult because they have been abused in some manner as children.

I wish you well on this journey. Please keep us informed on your progress and outcomes.

Go in Peace and Power

Red Lawhern, Ph.D.

Resident Research Analyst, LwTN

TY Richard for your words of encouragement, expertise and compassion. I plan for the worst, yet hope for the best possible outcome. I am still very new to this TN diagnosis and can’t imagine how I would have found treatment options that work for me without this site and the thoughtful advice and information it provides. TY for all your efforts.

Follow-Up: Right Deep Lobe Parotidectomy performed. Tumor was indeed compressing facial nerve. Surgeon confirmed on visual and took photos for me. So I am happy to report no Lyrica usage for several days now and no problems with usual triggers. Still no pathology report, but happy it was caught early.

I admit difficulty in reconciling all the literature that indicates that pain is associated with malignancy when my tumor was small, encapsulated and most likely, benign. It might just be that really rare circumstance where it grew in just the right place to irritate and compress the nerve. Pathology report expected in a few days. Longest month of my life so far.

Fingers crossed the pathology reveals nothing of note! I do so hope this puts an end to your suffering. Surgeon took photos... what a thoughtful fellow! It took me months before I could look at my x-rays..... but photos like that... OMG that could take me forever. Best wishes, Craig.

Pathology report: Benign Basal Cell Adenoma. Relieved. Blog post to follow a little later after I have digested it all. :slight_smile: