Parotidectomy Number Three
and Thyroid Surgery (2008)
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It was time for my yearly MRI, April 2008. The last time I saw the ENT he suggested I get an MRI before the appointment to save time and money. So this year I started with my family doctor and asked him order the MRI. The MRI was taken and the staff gave me the films to take to the ENT office. However, the MRI report had not been completed and they were planning to Fax it.
Of course I had to look at the MRI films myself. What do you think? My read is that there are two growths. One deep to the previous surgery and the other just below my skin. At any rate, I'll be seeing the ENT doctor on April 28th and will post his diagnosis afterwards.
June 2008 Update
Appointment with Dr. Terry Day, Medical University of Charleston, SC
I saw Dr. Terry Day, Director, Head and Neck Tumor Program, at the Medical University of South Carolina. 8:00AM appointment, had to get up at 4:00AM, ugh! On the brighter side, they had valet parking :)
Check in was quick, with very few forms. Evidently my ENT had taken care of the insurance information. Everyone was very friendly and they referred to their team as being the best in the Southeast, several times.
I met Dr. Days nurse first. Normal exchange of small talk. Asked if I had any pain or symptoms and I told her no. Then she asked if I understood why I was referred to Dr. Day. I told her yes, I had a tumor deep to the surgery bed of two previous surgeries of the parotid gland and surgery would be very difficult. She said "good, we know why you're here we just want to make sure the patient does also". I suppose they do run across patients who have been referred without really knowing why. At any rate, I would give Sandra an A+. She was very attentive before and after the Dr. visit and made sure I didn't miss anything.
The next person I saw was an intern. He conducted the physical exam of ears, nose, neck and inside of my mouth. He was happy to answer any questions and seemed quite knowledgeable of pleomorphic adenoma. We talked about parotidectomies and he said the surgeries performed there were normally the more complicated ones involving cancers or recurrent tumors.
The next person was another nurse. Not sure what she was there for. I think she asked one question and then left.
Enter Dr. Day. Easily recognized because he looked just like the picture on the website. He examined my mouth, neck and previous surgery site. We talked about possible surgery and he didn't seem overly concerned. The plan would be to dissect the facial nerve from the tumor, remove the tumor, and the wrap the nerve with tissue taken from my forearm. They believe in saving the facial nerve. But he didn't think I should be in a hurry to have it removed. They would use a series of MRI's, over time, to determine the growth rate. He is doing this with another physician he is treating. He suggested an ultrasound guided FNA and it took me all of about half a second to say, "no thanks". Silence. 3 Pairs of eyes looking at me. Then Dr. Day said, "Don't you want to know if it's cancer?". If it is we will take it out right away, and conduct a PET because cancer can spread through your blood. So...... I'm scheduled for the FNA this Friday, back in Charleston. My rational is that if I'm not going to be aggressive with surgery, followed by RT, I should be aggressive with the testing. Since I've already had multiple surgeries, and he concedes I probably have multiple small tumors, I suppose the issue of seeding this tumor with the FNA isn't that great.
I'm rather reluctant to post this because I'm a firm believer in "if it doesn't belong there, take it out". This is my third time around and the risk of facial nerve damage is extreme. There is no doubt in my mind I could go to another highly rated surgeon and be told to take it out at any risk and then follow up with RT. In reality, I suspect this is a delay of the inevitable.
Ultrasound Guided FNA
Charleston, SC Medical University. June 2008
I went for an ultrasound guided fine needle biopsy today with a great deal of skepticism and fear. Having read accounts of CT guided FNA’s, doubts to the accuracy, comparison to a “fishing expedition”, and the possibility of seeding, I really had my doubts and was beginning to think I was a real dope. Combine that with a fear of needles and I’m still finding it hard to believe I went through with it. The appointment had been made this last Monday so I didn’t have a lot of time to dwell on it, luckily.
Having been through it now, I have a different opinion. I watched the procedure on the monitor in graphic detail. Here’s how it went:
I was escorted into an examination room the size of a child’s bedroom. Rob, the technician said the first step would be to find the nodule. I asked him if he had a copy of the MRI scan and he thought they might on the computer. I was carrying my 3 ring binder with Xerox copies of the scans and I showed him that there may be two nodules we are looking for, one superficial and one deep. He was a good sport about the whole thing and took the scan copies to the attending doctor. They both returned, and decided to scan for both. It only took a few seconds to find the superficial node. The deep node was more difficult; they tried a second probe that would more easily fit into my divot. Then the head doctor took the controls and found the deep nodule. Now I know that’s a good thing but I was beginning to think they wouldn’t find it and I would be out of there, sans needles.
So we are up to two doctors and the technician in the room. The doctors decided to leave and call my ENT surgeon. After all, the MRI report said one nodule, only the patient and ultra sound were saying two. After talking to my doctor they returned with the decision to biopsy both (dope!, why did I say two?). The younger doctor described the procedure. They will numb the area with a very small needle using lydocaine. Then they will take three biopsies of each node, using small needles the same size as the one used to numb the area. These would be guided by the ultrasound.
The doctor decided to rearrange the room so that he could work on one side of the bed while looking across me at the monitor. So I’m laying on my back, looking to my left, straight at the monitor while he and the other doctor are to my right, one with the probe and the other with the weapons. They started with the superficial nodule, placed the probe on my face and there it was on the monitor, as obvious as can be. They numbed the area and I honestly didn’t feel a thing. They started the procedure and there was the needle entering from the right side of the screen heading straight for the nodule. The needle looked to be the size of a number two pencil on the monitor and the nodule the size of a quarter. I watched the needle enter the nodule, you could see it squish around a little (deform like squeezing a ball) and then with the needle in the center of it he moved it back and forth collecting samples from different areas of the nodule.
Did I mention the pathology people had set up shop in the little room by now. Yup, lab table on wheels complete with microscope. Yup, there are six of us in there now. Two pathology techs, the ultrasound tech, two doctors and myself. They had opened the door and added screens in the hallway to create more space. The doctor handed the first needle to the path tech and started the second sample of the first, superficial nodule. By the time he had completed the third sample, the tech had signaled he had what he needed. The doctor said when they went for the second, deep nodule, they would pause after the second sample to see if a third was necessary.
They numbed the second area, found the deep nodule on the ultrasound and started working again. This one was more difficult for the doctor to hit with the needle. I had my doubts about the first sample, remember I’m watching what the doctors are watching and I’m not seeing a needle. But I did see the nodule moving. The second sample was obviously a bull’s-eye. The needle was in the center and he moved it back and forth around the inside. He probably spent a minute in there. He handed this to the path tech and we waited as they prepared and looked at the sample. The tech smiled and signaled he had what he needed. The doctor said the magic words “we’re done”. I asked the pathologist for a preliminary reading, he stammered and the head doctor quickly cut him off and said further analysis would be needed and they would let my doctor know by Monday. I knew I was out of bounds, good or bad they would want a second reading. But I thought I would play the “older and wiser card” to see if I could get information.
All in all it wasn’t painful, and when you’re watching the sample being taken with your own eyes, you gain a degree of confidence that they at least got a good sample. The first time I had an FNA done, 7 years ago, the local ENT simply felt for the tumor with his finger and then took a shot at it with two needles. The samples were sent out for pathology testing at a different facility.
The test was at 10:00AM and I had not eaten. Was afraid I would puke during the procedure. So my first stop was at the coffee shop on the first floor of the hospital on my way out. The doctor who had performed the procedure shot by the coffee shop, did a double take, then came back and handed me my MRI scan copies. That was really good of him to track me down 3 floors like that, I know he didn’t have to.
Two thumbs up to the caring staff at Charleston Medical University. They really are a great team. Again, when I arrived all the paperwork had already been taken care of. One facility had passed the information onto the next.
On the way home I followed Ed’s advice and stopped at Wendy’s for a frosty. It was a 3 hour drive and when I got home I was ready for a couple Tylenol to take care of the dull ache. I ate dinner and I’m feeling fine this evening. The area is just a little swollen.
The biopsy was conducted on Friday and I called Dr. Day's nurse the following Tuesday for the results. Both nodules were confirmed to be pleomorphic adenoma
October 2008 Update
MRI and Follow Up Appointment With Dr. Day - MUSC
This is truly the way to get it done. I had an MRI at 7:30AM followed by an appointment with the surgeon at 9:30AM to review the MRI.
The MRI procedure was uneventful. They put an IV in my arm, took 5 series of films, injected the contrast chemicals in the IV and took two more series of films. You can count the series. There is a short pause between each and the frequency of the machine changes. For some reason, for me, they always take a total of 7 series and the procedure is about 35 minutes long. Each series has about 24 pictures.
I looked at the films with Dr. Day on his computer. Our "relationship" is one where we have a discussion, almost as though we are talking about someone else. I believe it comes from my approach, and the fact I'm an engineer and not an emotional person. I feel very comfortable knowing everything that is going on and holding this discussion. The Dr. has responded in kind. I carry a 3 ring binder with past MRI pictures, radiology reports, etc. So Dr. Day offers copies of the new films and reports to me, I don't have to ask.
We look at the scans and discuss the two growths. They both look to be about the same size as the last scan but we will wait to see the radiologist's report and formal volumetric measurement. If it is growing at more than 3mm per year we will perform the surgery soon. If not, we will watch. He points out the facial nerve on the "good side" and then we look at the surgery site. There is no parotid gland remaining and while we can not see the nerve he points out that it must either be on top of the growth, just under my skin, or under the growth against the muscle. I ask him if the surgery will be difficult and he replies no, just time consuming. He is very confident, but not cocky in any way. We then look at the deeper growth, it's about 1.5cm. Again, he is confident in his ability to remove it and we will see if it has changed size before deciding on a plan. I point to a dark circle and ask if it's a vein. He says yes, the jugular. He pages down through the layers of films and shows me the jugular vein as it transitions up from my lower neck to the skull. The deeper tumor is against it. I ask if this makes the surgery more difficult, and he relies no.
Radiation Treatments - I asked Dr, Day if he suggested RT after my next surgery. He explained that he had brought this up in the last tumor board review. The MUSC RT specialist, Dr. Sharma, suggested no. The rationale being that while there is a good chance RT would slow future growth of pleomorphic tumors, if a future surgery was required, sacrifice of the facial nerve would nearly be a certainty. They feel confident in being able to remove future growths surgically.
We now turn to the thyroid gland. Dr. Day says I'm obligated to tell you of a secondary finding. There is a suspicious spot on your Thyroid gland. This did not strike me as a total surprise because something in the back of my mind told me this had come up on previous scans. I've since gone back through my records and see that a radiologist had pointed it out in a CT scan in 2001 (I actually found it here on my website on the CT Scan Report page) Nothing was done about it at that time. Dr. Day explains that they are finding Thyroid abnormalities are more and more common and are almost always found as a secondary finding to a head and neck scan. He thinks a large percentage of the population has them and takes them to their graves. He asks if I work around chemicals, x-rays, or radiation. He asks if I have had a lot of dental x-rays. I answer yes to dental x-rays. I ask for his recommendation and he suggests exploring it further. So he scheduled me with a specialist, set up an Ultra Sound scan, and sent me for blood work down the hall.
Back to radiology for another Ultrsound guided FNA. this time of the thyroid. They first scanned with the ultrasound and found what looked like a cyst and a dark area they thought was a tumor, so they sampled both. They first numbed the area with a tiny needle that could hardly be felt. They then took 3 samples of both areas with 6 needle/syringes. Sounds terrible, but it was painless. I was lying on my back with a pillow under my neck and head tilted back a little to expose the thyroid gland in the lower neck area. I closed my eyes while they performed the procedure. It probably took 30 minutes. The lab had set up shop in the room and was viewing the samples and giving feedback to the doctors. On the third sample of the cyst, they simply drained it.
At the end of the procedure on of the doctors turned his back to the lab technicians and held two thumbs up, close to his chest. I took this to mean the preliminary results were good. I don't think they are allowed to actually tell you since the samples need to be sent to the actual lab for analysis first.
Thyroid FNA Results
I saw an Endocrinologist a few weeks later for the results. She said the FNA samples found "hurthle cells". 80% of the time this is a benign condition but the other 20% of the time they are cancer. She explained Thyroid cancer is one of the most treatable cancers, etc, etc. She recommended I have it removed to be safe. I asked her if Dr Day could remove it at the same time he does my parotid surgery. SHe called him to ask and he was on his way into the operating room. His comment was "well I've never been asked that before". I took that to mean no. I told the doctor I would deal with the parotid gland surgery first, and then return to her after I had healed, to discuss the thyroid surgery.
Surgery Pre-Op Visit
This was a busy day. My first stop was with Dr. Day, then the Anesthesiologist for blood work, an EKG, a talk about the procedure and finally a chest x-ray.
Dr. Day's nurse walked into the office and said "I see you're scheduled for both a Parotidectomy and a Thyroid lumpectomy, is that right?". The lumpectomy caught me off guard but I said "right", because I figured I would rather get them both over with at one time and recover once instead of twice. I then talked to Dr. Day and said I'm up for two surgeries if you are. He said it would not be a problem, It would just add two more hrs to the surgery and an extra day in the hospital to recover. I asked him about the wound and he said he would close with sutures. We discussed the incision for the Thyroid and he suggested an incision low on my neck that a tee shirt would cover up. He said it would be 2 to 3 centimeters. We also discussed the parotid incision and he said he would follow the last scar. He normally puts the incision further back behind the ear but there would be no sense in making another scar. I asked about the length of the surgeries and he thought it would be around 6 hours in total.
Blood work and EKG - This took about 20 minutes. They took about 6 small vials of blood and the hooked me up to the EKG. Thyroid not provide any feedback.
Anesthesiologist - I talked to the intern, signed a lot of forms and answered a lot of questions about medications I'm taking and my past experience with anesthesia. I have never had any complications with anesthesia in the past. With the exception of a headache, I never feel sick in anyway after surgery. They give medicine to settle your stomach anyway. I was told not to take any blood thinning products, including aspirin. Someone on the forum also mentioned Omega 3 is a blood thinner. The Anesthesiologist told me they would insert a breathing tube in my throat during surgery and remove it before I was fully awake. He looked in my throat to see if there would be a problem. I was told not to eat or drink anything after midnight the day of surgery. I could take medications with a tiny sip of water.
Chest X-ray. I don't know why, but they then sent me for a chest x-ray. It only took a minute and then I was on my way home. This was a Thursday I was scheduled for surgery the next Monday.
I was scheduled for surgery at 10:30 and was asked to arrive by 8:30AM. The hospital in Charleston SC is 3 hours from my house so I was up at 4:00AM and on the road at 5:00AM with my wife. I pack a small bag with a change of clothes, tooth brush, etc.
We checked in on the fourth floor of the hospital, signed a ton of forms, and were sent to the waiting area. I waited until about 10:00AM and was then brought to he pre-op/post-op area. This was a row of curtained off areas where they prepare you for surgery. I changed into a hospital gown and put al my clothes in a bag. They started an IV and then let my wife in to wait with me. Remember, this is a teaching hospital, so many of the workers. It took a few tries to get the IV working. After a couple tries I said "time out", and they sent someone more experienced who started the IV with one try.
While still in the pre-op room they injected a medicine to "make me comfortable". I guess I was a wake, but I have no memory of leaving pre-op or going to the operating room.
My next memory is being back in the pre-op/post op area. I remember a few bits and pieces of this, nothing negative. No pain or discomfort, just joking with the nurses and my wife. I guess the doctor explained how the surgery went, but I have no memory of this. I do remember them giving me medication to lower my heart rate which was running a little over 100. I guess it worked :).
The next thing I remember is being in my hospital room. I then realized that my eyelid would not close and my mouth was not working right on the surgery side. But I was expecting this and was not surprised. Again, I had no pain or discomfort. I was hungry and asked for dinner. I had soup, apple sauce and yogurt. I spent the next two days here. The nurses checked my vitals every few hours, even during the night which is a bother. I slept so so because of the strange bed and noises. All the rooms at this hospital are singles so at least I did not have to deal with a roommate. I had an IV in the entire time and two drains, one for the thyroid and one for the parotid incision. Again, no pain, probably because I have had parotid surgery two times before and don't have a lot of feeling in that area. The drains pretty much stopped draining after 36 hrs but they left them in until the Wed morning, surgery was Monday. The drain is a small hose with a suction ball on the end that is clipped to the front of my hospital gown. I had no complications and was discharged Wednesday around noon. I was happy to get out of there and on the road home.
Happy to be home around 3:00PM Wednesday afternoon. I went straight to the garage to make my own eyelid weight. Not being able to blink is a real bother. My eye waters and I can't see properly. I knew from my last surgery this could last several months and I could not get an eyelid weight until I went to an eye surgeon for a prescription. O back to the garage......I hammered out a lead fishing sinker, cut it into a rectangle about 3/16" wide, 1/2" long and 3/32" thick. I wanted it to weigh 2 grams. I then rounded it by squeezing it against the outside of a 3/4" socket wrench. I taped it to my eyelid with 3M double backed tape that is used to put plastic wrap on windows during the winter up north. It worked fine. I had called my eye doctor from the hospital and had a real weight on order, which I picked up the Monday after surgery. I used my temporary weight only until I had the real one. Now that I have the real thing, the dimensions are about 3/16: wide, x 3"4" long x 1/16th thick and it weighs 1.8 grams. The outside of a 3/4 socket is the proper curve.
I had surgery on Monday, got home on Wednesday, went to the eye doctor the following Monday and then went back to work on Tuesday. It's December, so I only worked until Friday and was then off for two weeks for the holidays. I traveled from SC to Pittsburgh PA and State College PA to visit relatives during the holidays. It takes about four weeks for most of the swelling to go down and the incisions to heal.
I'll start another page about this. I'm scheduled to start RT sometime in early January. I had my preliminary visit for set up the week after surgery. I'm moving forward with RT in an attempt to stop or slow down future occurrences and save my facial nerve. My last tumor was wrapped around the main trunk of the facial nerve and was removed in pieces. There is no doubt the tumor was spilled, and little doubt future occurrences will happen without RT. My surgeon says he will need to sacrifice the facial nerve if there is a future surgery.
Thyroid - Benign hurthle cells and scar tissue
Parotid - Benign pleomorphic adenoma