2nd Parotidectomy Experience
Go here to read letters from 100 other people with parotid gland tumors. Ask Questions.
170 people have
provided answers to pre-op questions. Bench mark yourself against
them. Age, gender, health, etc.
Read what they have to say after the operation.
I first noticed a lump in front of my right ear lobe in late July. The lump was not noticeable visually, I felt it one night when I placed my hand on the side of my face. Having been through this before I had a pretty good idea of what it was. Due to my insurance carriers requirements I visited my family doctor first. He felt the lump and suggested it may be a lymph node and may go away. Because of my history, I suggested a visit to ENT.
During my first appointment the ENT doctor felt the lump, performed a fine needle biopsy (FNA), scheduled a CT scan and scheduled surgery two weeks out. I'm not much for needles but the FNA was not too bad. It only took a few moments and wasn't too painful.
The doctor/surgeon informed me of all the risks associated with the surgery. Mostly about the possibility of damage to the facial nerve and temporary weakness to the right side of the face even if there was no injury to the nerve. Simply due to the trauma of working around the nerve. I was also informed that the likelihood of recurrence increases with each recurrence. 10% chance of recurrence after the first surgery, 25% after the second, 50% after the 3rd, etc. The surgeries also get more difficult due to the scar tissue.
When asked if I had any questions, I basically interviewed the doctor to determine if he was "the one". I asked about where he went to school, where he had his residency, and what I felt was most important, how many parotidectomies he had performed and how many patients had complications. Now I'll have to tell you, only one out of four doctors I've seen in the last two months have given me a straight answer to those two questions. My experience is that the younger the doctor, the less likely he or she is to give a straight up answer. They don't want to give the impression they are not experienced. Never the less, I suggest you press until you receive a satisfactory answer. In the case of this doctor I pressed until he told me he performs about one of these operations a month, for the last five years, and had never had one resulting in permanent nerve damage. Though he admitted to having one patient go 6 months with weakness on one side. The doctor thought this would be an easy operation since the tumor seemed to be superficial.
I should point out that it is the practice of his ENT office to have two surgeons at all parotidectomies due to the difficulty in dealing with the facial nerve. They feel it is in the patients best interest because the surgeon will be working with someone he is familiar with instead of a hospital nurse.
I chose to seek a second opinion. While I had no doubts about having the tumor removed, I wanted to learn as much as possible. I found that it is difficult to take in all the information from one doctor visit.
My family doctor gave me a referral to a different ENT office. This doctor was a little older, had about the same experience (one surgery a month), and would conduct the surgery under a microscope. He also had never had a patient with permanent nerve damage. When asked what his opinion was of the other doctor, he refused to comment. He said "make no mistake about it, we are competitors and I want to perform your surgery". In the end, I chose to stay with the first doctor. I liked the idea of having two surgeons.
This was a surprise since the doctor had not mentioned I would be hooked up to an IV for the scan. They inject an agent that helps the soft tissue show up better on the x-rays. The procedure took about 15 minutes. You simply lie on a table that transports you in and out of the CT machine.
I would definitely have second thoughts about undergoing another CT scan for a parotid tumor. I've read that magnetic imaging is much better. So my advice is, press the doctor on why he is ordering a CT Scan, what it will show and why they are not using magnetic imaging.
The doctor performed a Fine Needle Aspiration. A sample of the tumor was taken in the doctors office with a small needle and syringe. The sample was sent out to a lab to be examined. The doctor does not expect to obtain definitive results from this test. If it comes back as malignant, it probably is cancer and he will be better prepared to deal with it. If it comes back negative, maybe it's really negative and maybe it's not. Mine came back negative.
Pre-op was conducted at the hospital a few days before the surgery. They took my vital signs, conducted an EKG, and filled out a ton of forms. By now you will have worn out your insurance card!
I was instructed not to eat or drink after midnight before the surgery. I actually escaped without being stuck with needles!
I arrived at the hospital at 9:00 for a scheduled 11:00 surgery. They took my vital signs and gave me an injection to "relax". I was taken to an area outside the surgical room around 10:00 where they began the process of starting IV's. This was a surprise since my last surgery involved only one. This time they placed an IV in the back of each hand and a large one in the wrist to monitor blood pressure. They are however relatively painless after the injection above and the numbing shots they give before each.
I was then rolled into the operating room where a nurse and assistant anesthesiologist were waiting. They placed a mask half over my face which I guess was to knock me out? At any rate, they then started to question why I had three IV connections. The assistant anesthesiologist said "I didn't order that third line, who ordered that line". Then he noticed I was still awake and placed the mask fully on my face. That's all I remember...
The hospital reports read as follows:
Greenville Hospital System, SC
NAME: XXXXX,XXXXX, X
PATIENT NO: XXX-XXX-XX-XXXX
DATE OF PROCEDURE: September 28, 2001
XXXXX XXXXXX, M.D.
XXXX XXXXX, M.D.
Right recurrent pleomorphic adenoma of the right parotid gland.
Right recurrent pleomorphic adenoma of the right parotid gland.
Revision, right superficial parotidectomy with removal of two tumors; one superficial to the facial nerve and one deep to the facial nerve.
DESCRIPTION OF PROCEDURE
The patient was in the operating room. General anesthesia was induced. The patient was intubated. The table was turned. The right side of the face was examined and injection was performed with 1:50,000 epinephrine using 4cc of this solution to inject the incision and face overlying the parotid area on the right. The face was prepped and draped in the usual sterile fashion. The upper portion of the previous parotid incision was opened and dense scar tissue was encountered subcutaneously. This was dissected free with sharp and blunt dissection raising the anterior flap forward with facelift scissors. There was a fair amount of fat, connective tissue and some residual parotid tissue apparently overlying the easily palpable tumor which was approximately 1 cm anterior to the tragus. Dissection down along the tragal cartilage revealed the main trunk of the facial nerve which was identified and stimulated using the nerve stimulator confirming its identity. This was dissected forward and as it branched, the upper division of the facial nerve was dissected forward nearing the tumor which was just superior to this area. In dissecting out the facial nerve from surrounding dense scar tissue, a small rent was made in the upper most branch of the facial nerve. This was not a through-and-through injury, but involved approximately 50% of this branch of the facial nerve. The remaining distal portion of this nerve was traced superiorly, and down to course between the main tumor and another tumor deep to that. The second branch was also noted to course in the same place, but was preserved with sharp and blunt dissection. The tumor was identified and reflected free from the surrounding tissue with blunt and sharp dissection. There was noted to be a less than 1-cm tumor deep to these upper two branches of the facial nerve that was dissected free from the intact second branch of the nerve with sharp and blunt dissection using the microscope for visualization. With the tumors removed, the wound was irrigated. Under the microscope, the superior branch of the facial nerve was re-anastomosed with three 8-0 Prolene sutures. This approximated the nerve nicely and the wound was irrigated. A #10 round Jackson-Pratt drain was brought out through a separate incision posteriorly. The wound was closed with interrupted inverted 3-0 Vicryl suture, and the skin was closed with DermaBond. The patient was awakened and taken to the recovery room where he was noted to have significant facial weakness with preservation in the lower branches around the corner of the mouth, but with significant weakness superior to the upper lip on the right side. No voluntary closure of the eye was distinctly noted.
XXX XXXX, MD
GMH ľOperative Report
PATIENT NAME: XXX XXXXX X
Specimen # xxxccvv
Source: A: Parotid tumor R
B: Parotid tumor R
PATHOLOGIST: XXXX XX XXXX MD
Clinical correlation as to the possibility of a prior excision is suggested. The are several small nodules present in A and an additional nodule present in B. Case also reviewed with Dr.BBBB on 10/1/01.
PATIENT NAME SSN DOB SEX M RACE W
I awoke in the recovery room. This is an open hospital ward type set up. Everyone in the area is busy and people start asking questions. It takes a while for your head to clear. The surgeon appeared and explained that he had "nicked" the facial nerve and the right side of my face was temporarily paralyzed, for up to a year. At this point they really don't expect for you to take everything in. He promised to see me later that night. The actual operation had taken about 3hrs.
I spent about 6 hours in the recovery room because no hospital rooms were available. It was Friday night and the place was busy. I was not in any pain but was anxious to have the IV's removed. They removed the one in my wrist but refused to remove the others. I asked what the one in my right hand was for since nothing was connected to it. The nurse said it was a "spare" and as long as I was in "her recovery room" it was going to stay. The doctor however overruled and it was removed. The third line needed to stay until all the antibiotics had been administered after midnight. With all the fluids they are pumping into you, you are going to have to pee. But it seems like this part of your anatomy is the last thing to wake up. After half a dozen tries I'm happy to report things start getting back to normal.
I was taken to my hospital room around 9:30 PM. The surgeon came by and again gave me the run down on the operation. There had been a second tumor below the first. The facial nerve had been sandwiched between the two tumors and he had nicked the nerve. The scar tissue from the first surgery had made the operation more difficult. The nerve had only been cut 50% through and he had sutured it back together. The nerve should heal but the process may take a year. The good news was that in his opinion the tumors were benign and this would be confirmed by pathology. I was never in any pain nor did I need any pain relief drugs. I slept on and off until 8:00 am.
The surgeons partner came by at 9:00 AM to remove the drain. The drain consisted of a piece of clear tubing which had been laid inside the wound, about four inches, and brought out through its own incision lower on my neck. The tube was connected to a 3" diameter plastic ball that had been squashed so it would pull a vacuum and draw out any blood and liquids. The nurse had emptied it twice during the night, maybe a shot glass worth of fluid in total. The doctor simply pulled it out. The thought of it hurts worse than the experience. It's painless.
I left the hospital at 11:00am the day after the surgery. I laid low the rest of that day. Again, there was never any pain. I had chosen to take a week off from work after the surgery. My last experience was a little more painful, the wound was pretty ugly (3" long extending from the ear down into the neck), and I had been instructed to keep it dry. This time the wound was even longer, extending 1/2 up the front of my ear and it's appearance was even uglier. I was however feeling great and chose to start painting the inside of the house the next day. I also got out and did some hiking and sea kayaking.
Surgery was Friday and I went back to the doctors office on Monday. I was informed that he had closed the outside of the wound with glue and I could take showers without any issue. This glue is why the wound was so ugly at the time. Some blood had been mixed with it and it looked like scab. This glue is great stuff though. After two weeks I peeled it off and there was no sign at all of any scar in front of my ear. The old scar below my ear is still obvious.
Due to the probability of recurrence and complications with future surgeries, the doctor has recommended radiation treatments. I've seen two radiation oncologists. Both agree that I should do it and both are eager to start. However, when asked the magic question, how many patients have you treated for benign pleomorphic adenome, the answer, after a lot of prying, was none. I am therefore seeking the guidance of a specialist in Florida and will report back soon.
I think I have pretty well covered this already. Due to damage to the facial nerve I am paralyzed on the right side of the face. I can grin, but can't raise the right upper lip to create a toothy smile. I can't raise the right eye brow and can't blink the right eye. While I can't close my right eye, I can "not open it". In other words I can turn off the muscle that raises the eye lid. I visited an eye specialist who has given me a lead weight that I tape to the right eye lid. When I blink, the weight pulls the eye lid down. It is not at all uncomfortable and it's a huge improvement over not blinking and having your eye dry out. While people can see it, I actually forget about it myself. At bed time I tape my eye closed with paper medical tape. This was suggested by the eye doctor. I cut a piece about 1 1/2" long x 1/8" wide. I fold a small piece on one end over and use that in the morning to remove the tape. To put it on, I hold my eye closed, use the open eye to see what I'm doing, and place the tape on my eye lid and down my cheek.
On the positive side, the Frey's Syndrome I used to experience is gone.
3 Month Update (Dec. 2001)
It's been three months now since my surgery. Still no signs of Frey Syndrome. I started getting movement around my nose, it started as a twitch when I tried to move my nose, about 6 weeks after surgery. Around 7 weeks after surgery I was able to make a "toothy smile" on the surgery side again. 8 to 10 weeks out I started getting some movement to my eye lid. However, I continued to wear the eye lid weight. Now, after 12 weeks, I can blink my eye without the weight, about 75% with a normal blink and 100% if I blink hard. I've gone a couple days now without the weight. My wife says that some times the one eye does not blink (no wonder all the ladies think I'm winking at them ;). I still tape my eye closed at night because I don't want to risk hurting my eye or having it dry out. I still have no movement at all of my right eye brow. Can do the Spock thing real well.
Numbness. Some people think because I said the right side of my face is paralyzed, I was also numb. This was never the case. The only numbness I ever had was my right ear. Most of that feeling is back now with the exception of my ear lobe. The surgeon says the feeling to my ear may never all come back, but my mind will eventually "fill in the blanks".
5 Month Update (Feb. 2002)
I've got all the movement back to my face except I can't raise my right eyebrow. I stopped wearing the eyelid weight after 3 1/2 months. No more trouble with my eye.
I'm scheduled for an MRI today. This will be used to see if any of the tumor was left behind and will serve as a baseline for future MRI's.
7 Month Update (April. 2002)
MRI went fine. No traces of tumors growing in surgery area.
With the exception of my right eye brow, I have all my facial movement back and all the muscles seem strong. I'm gaining some movement in the eye brow also. I'm confident enough in my eye lid to start wearing contact lenses again. I had stopped due to the one eye being a little dry.
The Bulletin Board is going strong now. I've learned a lot from the experiences of people there. If you have not stopped by the bulletin board, please do.