John's Story

Tumor of the Parotid Gland

 


Forum

Read or Leave Messages

Click Here

(Bulletin Board)

Go here to read letters from 100 other people with parotid gland tumors. Ask Questions.

 

Site Map

 

Home

 

Introduction

 

My History

 

1st Parotidectomy
 

2nd Parotidectomy

 

CT Scan Report

 

What Should I Ask My Surgeon?

 

Tumor Statistics

 

Diagram Of Facial Nerve

 

Do List - Before surgery

 

Pre-Op Photo's

 

Post-Op Photos Pg 1

 

Post-Op Photo's Pg 2

 

Post-Op Photo's Pg 3

 

Success Photo

 

List of Surgeons

 

Costs/Bills
 

Radiotherapy

 

Julie's Story - Radiotherapy

 

Andy's Site

 

To: My Guests

 

My Quest

 

Pre-Op Survey

170 people have provided answers to pre-op questions.  Bench mark yourself against them. Age, gender, health, etc.
 

Post-Op Survey

Read what they have to say after the operation.

 

Links

 

Building a Web Page
 

 

I first noticed a lump behind and below my left ear at the beginning of July 2003 while on vacation.  When I got back from vacation, I called my family physician and scheduled an appointment.  After examining the lump, my Dr. sent me for an MRI to rule out a cyst.  On Tuesday July 29 my Dr’s nurse called to tell me that my Dr. wanted me to see an ENT, as the lump was more than a simple cyst.  An appointment was scheduled for August 7th for an evaluation.  At this point, and without a diagnosis other than that it involved the Parotid Gland, I started to do my own research on the Internet in preparation for my ENT visit.  

On August 7th, I went to see Dr. Michael Kim (ENT).  He examined me and reviewed my MRI.  He indicated that I had a tumor of the Parotid Gland and that surgery was the recommended treatment. He discussed the statistics of a benign vs. malignant tumor, all of which concurred with the information I found on the Internet.  He offered, without me asking, to refer me to another doctor for the surgery.  He gave me several doctors’ names in Hershey and Philadelphia, PA.  He said he would make the contact if I wanted to see them.  I asked him about doctor’s at several hospitals, including University of Pittsburgh’s Dr. Eugene Myers.  Dr. Kim gave an excellent recommendation for Dr. Myers.  I also mentioned Memorial Sloan-Kettering in New York City.  He said that Dr. Jatin Shah, Dr. Ashok Shaha and Dr. Denis Krause were excellent in the field. He also offered that Sloan-Kettering’s Pathology department was outstanding, which he said is needed to make an accurate diagnosis of the type of tumor.  Dr. Kim mentioned Dr. Mark Urken at Mt. Sinai hospital in New York City as another good surgeon. His advice was to pick a city to have the surgery done and chose a surgeon that I have confidence in.   

Having read several doctor recommendations from this site, reviewing several doctor biographies online, and leaning towards New York City because of its close proximity to where I live, I chose to contact Dr. Shah at Memorial Sloan-Kettering in New York City on August 7, 2003.  Going to the Memorial Sloan-Kettering website, I was able to submit my “new patient” information online.  Within two hours I was contacted by the hospital for additional information and a copy of the MRI report.  The MRI report was needed before a visit could be scheduled.  I was extremely happy by the speed with which I was contacted after applying.  Early the following week, I was notified that Dr. Shah would take my case and an appointment was scheduled for August 21st.

 The Second Opinion – August 21, 2003

After some initial paperwork, I was called into the examining room.  I had my two adult children with me and they were also allowed in.  Dr. Shah examined me thoroughly and proceeded to look at the MRI’s I had brought along.   He confirmed the diagnosis made by Dr. Kim, a tumor of the parotid gland.  However, he explained the diagnosis and surgery in more detail than Dr. Kim.  He explained the MRI in detail, and for me, this is where I saw his experience shining through.  The film taken in contrast (different frequency) showed the tumor as mostly white in appearance        He said that when you see this that it indicates mostly fluid.  In other words, the tumor contained a lot of non-cancerous material.  There was some tissue present, but appeared to be minimal.  He mentioned FNA, but said the treatment procedure would be the same whatever the results.  Apparently from what he saw in the MRI’s, and with his experience, he didn’t feel it was necessary to contaminate healthy tissue with this fluid or any tissue from the tumor, which he believed to be benign. I asked him a question about when he might consider cutting and removing part of a facial nerve to confirm his belief that it was benign.  He said the only time he would do that was if the nerve ran through a cancerous tumor.  I responded that he wouldn’t know that in my case, as an FNA wouldn’t be done prior to surgery.  He said that if he suspected cancer this conversation would be going a bit differently.  At that point, I felt confident that my tumor was benign and that all that was left was to remove it. 

 Dr. Shah asked if I wanted to go forward with the procedure and if I wanted him to do it.  It took less than a split second to say yes. I was with a doctor who was the Professor and Chief of Head and Neck Services at Memorial Sloan-Kettering.  He has spent more than 25 years at this hospital and travels worldwide to lecture and teach head and neck surgeries.  I couldn’t believe I was actually going to get someone with his amount of experience to operate on me.  All that was left was to schedule the surgery.  His first available appointment was the following Wednesday, August 27th.  Again, I was surprised at the speed and availability, time-wise when scheduling this surgery. I walked out of his exam room completely confident in my surgery and what the result would be.

 The Surgery – August 27th

I had pre-admission testing the day before surgery.  It only took about 1 hour, 10 minutes to complete. The testing included blood work, EKG and chest x-ray.  I received a call later that day with my surgery schedule.  I was to arrive at 9:15 am for surgery scheduled at 11:15 am.  Again, some brief paperwork and I was on my way to pre-op.  I changed into their gown and my vitals were checked. At about 11:10 am, a nurse came in to tell me that there would be about an hour delay in my surgery because of a surgery in progress.  This gave me another hour to wait, but created minimal anxiety in me. If I had any concerns about my procedure, it was about the anesthesia and not the surgery. 

Around 12:10 pm, they came to get me with a wheel chair.  I was wheeled into the OR, and from there, I got up on the operating table and had some time to look around at all the activity getting ready for my surgery.  The anesthesiologist introduced herself and then placed an IV in my hand.  Shortly after that, she injected something into it that she said would relax me.  I’m not sure how long it took, but the last thing I remember was looking at the clock and it was 12:30 pm.

 I was told my surgery was started at 1:00 pm and was completed at 4:15 pm.  I was taken to recovery and remember waking up and seeing that it was 5:30 pm.  Dr. Shah seemed to appear right after that to tell me that the surgery went as expected and that the tumor was benign.  I fell back to sleep and was in and out of consciousness for several hours after that.  A short while after 8:00pm, they found a room for me.  As I was being moved from recovery to my room, I felt a nauseous feeling come over me.  I was able to refrain from vomiting and when I got to my room, I asked for something for the nausea, which I received immediately.  After about 10:00 pm that night, I no longer felt nauseous and never did again.   

My first night was very restless as I was awakened for vital signs as well as having to urinate from the IV drip they had me hooked to.  The latter I found to be very difficult as an after effect of the anesthesia.  I was unable to completely empty my bladder much so I always felt the urge to urinate and that kept me awake most of the night. 

 The doctor’s team came in early the next morning (about 7:30 am) and looked at my incision.  They said I would likely go home the next day if my drainage slowed sufficiently.  They also said I could order breakfast and that my diet was unrestricted.  I was also able to get them to order my IV fluids suspended, as I was drinking on my own even before they arrived.  They left a short, detached IV in my hand so they could still administer antibiotics.

 By noon or so the day after surgery, I finally was able to empty my bladder fully and returned to a more normal level of urinary function.  I finally received my clothes, which had been left with a pre-op nurse, so I was then able to take a sponge bath and change into my own clothes. That afternoon, my daughter, who stayed with me the entire time I was in the hospital and was a source of great comfort and strength, walked with me around my floor for about 30 minutes. 

That evening (Thursday) Dr. Shah and his team came in at about 7:00 pm.  He checked my facial function and confirmed what I had already seen in the mirror.  My left side was weaker than the right.  My left eye closed slower, but it did close.  When I puckered my lips, they pulled to the right.  My left eyebrow didn’t lift as high as the right, and my left mouth corner didn’t rise as high as the right when I smiled.  However, I was thankful that the tumor was gone. Dr. Shah again told me that the surgery went very well.  He said my facial nerve and tumor were so integral to each other that he had to peel my facial nerve off the tumor.  He also gave me the good news again; that the preliminary pathology of my tumor was that it was benign.  I had a much better second night of sleep, but still not truly restful.   

Dr. Shah’s team returned early Friday and looked at the drainage from the afternoon before.  They removed the drainage tube and finished tying the final stitch that had been placed there during surgery.   Again, my face being as numb as it was, I didn’t feel a thing.  They said they would write the order to discharge me and I could go home.  That was music to my ears.  I took a shower, got dressed, and waited for the nurse.  She was a no-show for a while so, I kept going to the nursing station every 15 minutes to remind them that I was discharged.  Finally, she came in and said I needed one last dose of my antibiotic and then I could leave.

 By Saturday, (3 days post surgery) and after having gotten a good night’s sleep, I was up about 7:30am and felt great.  I decided to get a good bit of work done around the house.  By early evening I could feel soreness on the left side of my face.  I believe it was largely from eating a large dinner but other things I did that day could have contributed to it.  I did complete a fast three-mile walk that day that I’m used to running and felt great afterward.  I planned to wait until my stitches were removed before starting to jog again.   

First Post-Surgical Doctor Visit:

On September 4, 2003, I had my first post-surgical doctors visit.  Dr. Shah wasted no time in going to my file, looking at the final pathology report, and announcing as indicated previously, that the tumor was benign.  Although I didn’t expect to hear differently, those words gave me total and final relief.  He also said that the tumor was 2.8 cm long and nearly that in diameter.  Facial function was tested and Dr. Shah observed that, as expected, my left side was weaker than the right.  His expectations and mine are that with time and recuperation of the facial nerve, this weakness will abate completely.  During this visit, my stitches were removed.  Dr. Shah’s incision along the edge of the cartilage of my forward ear flap (not like the typical incision in a crease in front of the ear) will make the incision and any minimal scaring virtually invisible.  Dr. Shah said that he wanted to see me again in one month.  After that, I will see him in six months and then once a year as there is a 1% - 1.5% chance of reoccurrence of the tumor on the same side. These yearly visits will attempt to catch any potential new tumors early so they can be removed. The next day, I began jogging again, and there was no apparent affect on the area of my surgery.   

Over the next few days, I noticed soreness to the touch in my eyebrow, the tissue over my jawbone, my ear canal, and the incision and surrounding tissue.  This lasted about a week or so. The pain was not significant enough to cause me to use any prescription or over-the-counter pain medication. I was quite excited to feel something as it indicated to me that nerves were already starting to reconnect and that the healing process was well underway.  With the temporary numbness that this surgery created, I had no sensations that I would classify as pain.  For me, the entire post-surgical healing process was completely painless.

 Second Post-Surgical Doctor Visit:

On October 9, 2003, I returned to see Dr. Shah for my second post-surgical visit.  As in my previous visit, Dr. Shah checked my facial function.  I still had numbness in the bottom half of my ear, under my ear lobe and my face up to about one inch out from my ear.  He said this was all normal and that much of the remaining numbness will take several months to go away.  Numbness of my ear lobe will likely be permanent.  I consider this a small price to pay considering what could have been my outcome.  I have an appointment in March 2004 for a check-up and then every year after to check for any reoccurrence.  Dr. Shah said he wants to catch it when it’s very small.  My incision is healing nicely.  I have been applying liquid Vitamin E to the incision since the stitches were removed.  This is supposed to help minimize scaring from the incision.               

 

 

 

April 2004  Post-Surgical Checkup:

On April 6, 2004, I was supposed to see Dr. Shah for my 6-month follow-up visit. Dr. Shah was busy with a new patient so, I decided not to wait and be seen by one of his associates.  My visit in Oct. 2003 indicated that I still had some partial weakness of the left eyelid and brow.  After a visual examine of my facial function, the Dr. noted that this weakness is no longer apparent.  He conducted a physical examine of my throat and incision area and indicated that everything appears normal.  My incision has healed very well and I continue to apply liquid Vitamin E to it.

 I am still experiencing significant numbness in the lower half of my ear and my earlobe is completely numb.  I am also experiencing some partial facial numbness of the surface tissue along the left jawbone over to the incision.  However, I have recovered significant feeling in this area since my visit in Oct. 2003.  I would expect to have full or near full feeling restored in the next 6-12 months, if I continue to progress as I have.  To date I have not experienced any symptoms of Frey's Syndrome.  My next checkup is scheduled for April 2005.            

Medical Cost Summary

 Total charges (Family Dr. visit through second Post-Op visit)   =   $25,571.83 

      Note: The total actually paid by insurance was significantly less.

 

Total out-of-pocket cost    =  $1,201.38

 

Questions For Your Surgeon

Lessons Learned:

  1. Find the most experienced head & neck surgeon you can.  I would highly recommend Dr. Jatin Shah at Memorial Sloan-Kettering in New York City.  He is a Professor and the Chief of Head and Neck Services there.  He eliminated a lot of anxiousness I had as to whether my tumor was benign or not, even before the surgery, and gave me a lot of confidence that I came to the right surgeon for my Parotidectomy.  He is confident in his knowledge, experience, and surgical ability; but not arrogant. He will explain everything about your condition, including the surgery and post-surgical expectations. He will spend whatever amount of time you need to answer all of your questions during your consultation.     
  2. Because of the facial numbness that usually follows this type of surgery, I experienced zero pain.  However, several days after surgery I did have some faint facial soreness, but only to the touch.  No pain medication was ever really needed or taken.
  3. Anesthesia may wreak havoc on your urinary and bowel function.  However, mine came back fairly quickly, 24 hours and 72 hours, respectively.
  4. Don’t check your luggage with the nurse.  Give it to a family member to hold for you if you can.  If your surgery is delayed or if they don’t have a room on a floor for you when you’re ready to leave recovery, you may not get it until later the next day.  This is frustrating as there’s no better feeling than being in your own clothes as soon as you are able to.
  5. If the doctor’s tell you that you can do certain things, like eliminate IV fluids because you’re drinking on your own, make sure they write down those orders or the nurses will have to track them down to comply.  They won’t take your word for it.
  6. Expect not to get much sleep in the hospital, but get up and moving as soon as you can.  I found that laying around as much as I did waiting for my clothes, I started to feel some congestion in my lungs.  Walking around my unit for 30 minutes the first day after surgery seemed to help clear the small amount of congestion I developed. 
  7. Start drinking as soon as you can.  It will get you off the IV and help your throat feel better from the anesthesia tube that was in it during surgery.  I actually had an omelet, bacon, English muffin, coffee, cranberry juice and Jell-O for breakfast the first morning.  It’s a bit difficult to chew the first couple of days, but if you take your time there’s not much you can’t eat if you want to.  I did notice that this unrestricted diet appeared to cause a bit of soreness in my jaw but it wasn’t anything significant enough to cause me to stop.