Medical Update

Greetings from Redding, Connecticut! As I sit here on a cold wintry morning I am once again counting my blessings and finding hope in the midst of despair. It has been a long road to get here but I am optimistic that all will turn out fine for me.

So let me relate what has happened on the medical front since I last wrote. Joe and I had flown to Tennessee for my niece’s wedding. Riding back to New York with my brothers didn’t work out since they had todelay their return due to bad weather, so we flew to New York for our appointments at Staten Island University Hospital (SIUH).  (SIUH links at bottom of page) and after a $50 taxi ride from the airport, we arrived at the University Inn, a hospital-owned hotel for patients only, across the street from the hospital.

Tuesday morning at 8:00 AM we began the paperwork portion of the visit (a necessary if  exasperating part of all medical procedures) and at 9:00 we met with the famous Dr.Gil Lederman himself. He is a soft-spoken kindly gentleman with a subtle sense of humor and was very attentive and caring in his manner. He began with taking down a history of my tumor from beginning to present.

He only had the most recent MRI images we’d sent in and wanted to see some of the previous scans, which we did not have with us, so we went to this web site and downloaded the images from here for him to see! He had some questions as to how much was actually removed during surgery since the pathology report stated that the lab had been sent only 5 cm³.  (A later call I made to my surgeon’s office in Missoula established that over half the bulk of the tumor had been vaporized by laser, and the rest beyond the known 5 cm³ had been given to a research lab.) Dr. Lederman did say that he had never before seen an acoustic neuroma that "exhibited such explosive growth.", but he had no doubt that it was treatable and he figured there was a 99% chance of success in stopping its growth! This was fantastic news! Joe and I were, of course, elated.

ADDENDUM October 23, 2004:  A VERY STRONG WORD OF CAUTION IS IN ORDER HERE!  As we found to our sorrow, Dr. Lederman is so committed to selling patients on radiation treatments as to be starkly dishonest! He assured us that there would be no side effects to the treatments, that Val would go home and live a normal life, and that the tumor would die and all problems with it would be over after his treatment.

As Val's symptoms grew worse during 2004, he was kept abreast of developments and supplied with copies of the MRI scans. He repeatedly and continually stated, despite the clear evidence of the scans, that there was no swelling of the tumor and radiation would not cause a tumor to swell. Nor were we the first to believe his false promises. There are other stories in the AN Archive of other patients treated by Dr. Lederman who had severe swelling afterward that he also denied. Of course that allows him to keep up his "100% success rate".

Post-radiation swelling was one area where I clearly had not done sufficient research ahead of time, and... while we weren't quite desperate, we badly wanted some good news at that time and wanted to believe him. My later research, as well as the professional opinions of several doctors, has shown that, indeed tumors and brain tissue do swell in response to radiation treatment/damage, sometimes to 2 or 3 times their diameter at the time of treatment.  If an AN is one or one and a half cm. in diameter, such swelling is survivable; starting at four cm., it was not.

I will have five treatments spaced a few days apart to allow healthy tissue to recover some between sessions, while the tumor tissue is generally killed or rendered unable to divide and reproduce. We scheduled them, after the initial one on Thursday, to be on Tuesdays and Fridays, December 23, 26, & 30 and January 2. Since the LINAC radiation machine is used for body tumors in the mornings, my appointments are for 1:00 PM so we can get into and out of New York between morning and evening rush hours.

Dr. Lederman also wanted to know what I suffered as a consequence of surgery and I think he was rather disappointed to hear that I had only improvements afterwards and no serious lasting damage. He quizzed me repeatedly on any possible negative outcomes form surgery and I couldn’t give him any. He even did a couple of the usual office neurological tests on me to see how my eyesight and balance were and realized that I had indeed healed quite well. He is very anti-surgery and wanted more proof that is devastating to the patient, but in my case that just wasn’t so. However, another surgery would not be that benign.

We discussed what could occur if I had to undergo another surgery for this tumor, and Dr. Lederman basically reiterated what my own surgeon, Dr. Nick Chandler, had told us. In short, a second surgery would most likely leave me with facial paralysis, a chance of not being able to swallow and therefore needing a feeding tube, and possibly being unable to breathe through a paralyzed throat and tongue and needing a tracheotomy to be able to breathe. Also there would be a possibility of partial or whole body paralysis, not to mention the higher risk of not even surviving surgery at all. Not a pretty picture. It’s no wonder Dr. Lederman strongly advocates his radiation treatments instead of surgery.

As we discussed surgery vs. radiation, I mentioned to Dr. Lederman that Joe and I had discussed some of these possibilities, and that we had made the personal decision (which is not to denigrate those who might make a different choice) that I would rather let the tumor take its course and die with dignity than live paralyzed and unable to speak or eat if radiation was not possible and a second operation was the only option.  He replied that the promotional video that is sent to all prospective radiation patients was an older tape and it just so happened that this coming weekend they would be making a new video and did I want to be in it?  It seems that he has had few patients who have had surgery prior to finding his facility so he wanted to present my perspective for future radiation candidates. Since I had felt that helping other AN patients might be something I might be able to do, it took me only a minute to think about it and I told him that, yes, I would gladly be in his video. Imagine that…

After our consultation was over, a few nurses and technician’s came in next to fit me with my own dental impression and headgear for the radiation set up. Since our upper teeth are basically welded to our skulls and don’t move, taking a mold of them is a reliable way to position any head gear that you may want to reposition in exactly the same place at another time. So an impression was taken of my upper teeth in a very similar way that dentists take a mold to make a crown. Once the mold hardens (a few minutes) it’s attached to a metal frame that circles the head and another impression of the occipital area of the back of my head was made for positioning and support. A strap from front to back then tightens the whole thing down… well, actually up. 

The next step was to place a plastic dome over the metal ring and measurements from the outside of the dome to my skull were taken through multiple holes made for that purpose. The measurements allow the technicians to very precisely check the position the head in the frame so the computer can accurately gauge where the tumor is in relation to healthy brain tissue and thus target it to within a fraction of a millimeter on each repetitive treatment. It is an ingenious way to non-invasively get accurate positioning of the head that can be replicated however many times it needs to be. 

At this point the next step would have been to take a CAT scan with the headgear on so the computer could do its calculations on angles, dose, etc. However, as luck would have it, there was a big car accident on the nearby Verazzano Narrows Bridge and a number of trauma victims were rushed in that needed scans first. So Joe and I retired to the lobby to wait until the CAT scanner was free to use. Unfortunately for me, I had been told not to eat or drink anything from midnight before the scan (which I thought would be around 9:00 AM) and now it would be all morning before I would get in there. Between the lack of sleep, travel exhaustion, no food or even a sip of water, plus some strong menstrual cramps for good measure, I was in pretty lousy shape by the time it was my turn to go in for a scan about noon. 

For the CAT scan I was given an injection of iodine as a contrast agent and, since I was already light-headed, it gave me a “flush” that almost made me pass out! The technicians once again placed the plastic dome on my head frame and took the same measurements twice to be sure they were identical, once as I was sitting up and again after the head ring was locked into the table. At this point things happened pretty quickly. Then they placed a different metal frame over my head that had reference points on it that the computer would use to calculate the position of the tumor and all the surrounding brain tissues. However, once everything was in place, the actual scan only lasted about 5 minutes and we were done for the day. Amen! 

Dr. Lederman returned to tell us that if we wanted to hang around we could have my first treatment that very afternoon, but frankly, I was too exhausted, hungry, crampy and miserable to even think about further bodily abuse. Besides, Joe and I had to take public transportation all the way back to Connecticut (a bus to the ferry terminal, ferry to Manhattan, subway to Grand Central, and commuter train to Connecticut) which took us about five hours to do.The trip, hauling hand luggage,  was tiring in and of itself. After eating some leftovers from our Chinese dinner the night before, we caught the bus about 1:15.

Wednesday was a settle in and catch-up day, as Thursday would be my first treatment. Joe and I were staying at my brother Nick’s place, which happens to be right alongside the railroad tracks. As anyone who lives near trains or subways knows, you eventually get used to their noise to the point where you don’t even notice it anymore. However, when it’s still new to you, it can keep you awake. Well, both Tuesday and Wednesday nights neither Joe nor I slept particularly well as we woke up with each passing train almost every hour all night long. At this point my sleep deprivation was reaching new record levels and I was feeling pretty exhausted. 

Thursday morning was the start of a particularly long day.  Joe, my dad and I were all up at 3:45 AM so we could drive Joe down to New York to catch a 7:00 AM flight back to Montana. The roads were icy so we had to leave extra early to be sure we could get him there in time. We actually made good time to LaGuardia but found that the security gates were well to the front of the terminal leaving all the shops and restaurants inside the “secure area” so my dad was unable to get so much as a cup of coffee. I was very sad to see Joe leave. His love and support have been so crucial to my health and welfare!  

After our goodbyes, Dad and I battled some morning rush hour traffic over the Narrows Bridge to Staten Island, where we managed to find a bagel place for breakfast at 6:30 in the morning. After that, we found the radiation-oncology part of the hospital wasn’t open yet and it was biting cold out, so we went over to the hospital's University Inn hotel where Joe and I had stayed upon arriving Monday night. The clerk recognized me and was kind enough to let us come into the guest lounge. Not only that, when he heard our story and saw how tired we were, he offered us an empty hotel room to rest in free of charge! So Dad and I got to nap till 10:30 and went to my appointment refreshed and ready. There is human kindness everywhere, even in New York City. 

Since we were early that day, the staff made an effort to get me in earlier than my scheduled 1:00 appointment and they succeeded. My custom dental frame was inserted in my mouth, the dome helmet went on for final measurements (which Dr. Lederman checked personally) and I was positioned on the table under the LINAC machine. and the head frame was locked into the table. At that point everyone had to leave the room before they could begin. The radiation is strong enough that 7-foot thick concrete walls surround the entire room on all sides. Ouch.  

The treatment itself is rather quick and painless. The LINAC rotated over my head for less than 10 seconds, then the table I was on was rotated to a new angle and the LINAC hit me again for another 10 seconds or less. I was rotated a total of four times and irradiated four times and it was over. It was that quick and simple. Amazing. 

After my head frame was removed I was free to go. Dr. Lederman warned me that there might be some side effects later on in the day and to take it easy. He also invited my dad to be in his video this weekend, which was a fun surprise. Thank goodness my dad was with me for this first treatment, as I could not have driven myself back to Connecticut after the treatment. I felt woozy coming out of there and then extremely fatigued, and by the time we reached my brother’s house I had a raging headache, only my second one. (My first was after being given Dilantin a few days after surgery.) I also was mildly nauseous and generally felt crappy, so I took the good doctor’s advice and took a few ibuprofen and laid down and my symptoms slowly subsided. That night I slept well (I had switched over to my other brother’s house where there were no trains) and fell asleep grateful for all the support and caring I had received throughout this ordeal. 

Friday was a quiet day and I needed it, as my side effects were still present. I was feeling some facial numbness (trigeminal nerve symptoms) and the left side of my throat was scratchy and I was having some difficulty swallowing (facial nerve). The headache was low level and so was the nausea, but it took an effort to think and move. My parents helped me to go get a rental car so I could get around on my own for the next two weeks and then I put in some time editing a document I need to have done by year’s end. Later in the day I left town to go to my friend Karen Clarke’s house down on the coast and that’s where I’m writing from now. Karen is having her annual Christmas party today (Saturday) so it will be a welcome change from all the medical focus of the last weeks.

Well folks, that’s all I’ve got for now. There are plenty of philosophical points to ponder but I don’t have the time to explore those on this borrowed computer today. Once again, I thank everyone for all your loving thoughts and prayers. For those who like to target their prayers on something concrete, you can send them my way the next two Tuesdays and Fridays (12/23, 12/26, 12/30 and Jan. 2) at 1:00 PM EST ( 11:00 AM MST) when I receive my radiation treatments. The window of opportunity is only a half hour or so, as the treatment is quick, but time and space are relative matters so anytime works well.  :-) 

My love to all of you and may you all have a wonderful holiday season. I will be writing again when I can. 

Love, 

Val