Surgery or Death
(or, Saved by BBC)
Chris' AN story
(Here is Chris' picture).
My name is Chris Ottewell. I am (1 June 1998) a 50 year old engineer/project manager. I normally live in England, but I am just at the end of a 3 year contract in Paris, France where I have been living apart from my wife and family (3 children, youngest 19 years old) who I try and see (either here or in England as often as possible).
Towards the end on 1995, I experienced repeated painful earaches of the type I remember from distant childhood ailments. These were accompanied by tinnitus and a pitch dependant hearing loss. In the very cold Paris winter of 95/96 the pain became so bad I had to wear a cyclists neoprene earmuff indoors to keep the ears warm and relieve the pain! Out of doors a skiing cap with earflaps served the same purpose. I assumed that the cause was repeated ear infections, after all when you move from one city to another, it is natural for the body to have to gain resistance to the local infections...
That spring (1996) I saw my GP in England a few times who eventually decided to refer me to the local ENT specialist. When I saw the specialist's assistant, after all it was just earache, he just said: "Well the tests show that you have nerve deafness." I said: "Oh, when will my hearing return?" And he replied: "Oh, it won't. By the way, I want you to have an MRI, just to satisfy my curiosity as to why this has happened."
Well the MRI wasn't urgent and I was away working in Paris or Rome, or London so I didn't have the MRI until May 1997. By this time, I was experiencing numbness on the left side of my face and so I went once again to my GP. During the consultation I actually asked if there could be a connection between my ear problem and this new symptom? He carried out a few tests and said: "No connection at all, I can't say what the cause is, but I know what it isn't so don't worry".
I was called to see the ENT Consultant in June 1997 to review the MRI results: "Well Mr. Ottewell" she started, "you've got an Acoustic Neuroma, it's a sort of brain tumor you know, but don't worry, it's not malignant so it's OK. But it will have to come out or you will die." She carried on with the consultation (after I had asked for a glass of water and a minute or two to absorb what I was being told). She outlined the operation and the recovery (Translab approach was what she proposed) and described how the three surgeons involved (herself as ear surgeon, a neurosurgeon and another surgeon to graft soft abdominal tissue into the hole in my head) would carry out an 8 to 10 hour operation. This would be followed by a couple of days in Intensive care, about two weeks in general surgical recovery, three months convalescence, then see how it goes.
This was followed by another consultation, where I received more details of the operation and this time, its short and long term side effects. I was horrified, both by what I heard about side effects and by the fact that a perfect ear would be destroyed to get at this tumor. I was assured that the only alternative was slow death... Just as I was leaving, (I was standing in the doorway) the Surgeon said: "Oh, you may just hear about some radiotherapy treatment, that's only appropriate for those old and frail patients who couldn't survive surgery, it would be absolutely criminal to treat a young healthy person like you with radiotherapy."
Well, my generation know that Doctor knows best so I left the hospital to put my life in order before the horrific day arrived. Some people when faced with the sort of prospect we AN sufferers face, search the world for new miracle cures. I knew I could trust the Doctor and just waited.
At the end of February, I received a frantic phone call from my parents; by chance they had heard a 5 minute BBC radio talk about a new treatment for ANs. This featured a young lady from Bangor, Wales, called Yvonne Tommis, who when faced with exactly the same prospects as me, had shown considerably more sense and had refused to accept what she was told. She is involved in music and values her hearing even more than the rest of us. She had scoured the medical information available world wide and had discovered a Dr. Gil Lederman at Staten Island University Hospital, New York, who had treated her with what he called Fractionated Stereotactic Radiotherapy (FSR). This appeared to have no side effects and even offered some chance of hearing recovery. The BBC had picked up the story for a medical news programme as Yvonne had brought Dr. Lederman to the UK to talk about his treatment. My parent managed to get Yvonne's e-mail address and I in turn contacted her.
I have to say that, at this point, I was very half-hearted about it. I was facing up to surgery; there are no miracle cures, if it seems too good to be true, it probably is, Dr. knows best etc. Anyway I corresponded with Yvonne, I visited the SIUH web site. I investigated Gamma Knife and did all the other research I should have done months before. I discovered that I had not been told the truth - had I been lied to? I don't know, maybe it was ignorance, but now I had to work fast to find out all I could and choose my option. In some ways this was the most difficult time - if you think there is no choice, you can shrink back in your shell and await the unpleasant inevitable; but here I was with a choice........and without all the data!
Eventually, I e-mailed Dr. Lederman. I was astounded when he rang me at home in Paris. When he talked to me he just gave me the facts as he saw them, with an offer: "Send me copies of your MRIs and I will tell you if you are a suitable candidate for my treatment. In the meantime, I will send you copies of all my published papers on the topic and a video about the treatment." These arrived at my English address 19 hours later! (Congratulations to FedEx).
After considering all the evidence I had amassed, (which by then included internet and telephone talks with several of Dr Lederman's earlier patients), I reached my conclusions. They were:
Contrary to my (ex)surgeons belief, Gamma Knife or similar radiosurgery appeared to offer prospects at least as good as microsurgery, with lower risks of complications.
That is, the collateral damage might often be as great as microsurgery, but the chances of infection were nil (did the surgeon explain the possibility of serious infections such as meningitis, without being pressed?).
FSR offers all the advantages of single shot radiosurgery but with much better chances of avoiding collateral damage of any sort.
In addition 40% of Dr. Lederman's patients had experienced a measurable improvement in hearing. I could go into much more detail about my reasoning, but this account is already growing too long so e-mail me if you want such info. Anyway, my mind was made up, my symptoms were getting worse - tinnitus, headaches, deafness, facial numbness, a tendency to bite the inside of my mouth on the affected side when eating - I wanted treatment NOW. I rang SIUH and arranged to have treatment over the following two weeks.
So on 1 April 1998, less than six weeks after finding that there were alternatives to microsurgery, I was flying American Airlines to JFK. The following lunchtime (Friday), I arrived for my new MRI appointment at SIUH and was immediately struck by the caring attitude of all the staff. They work as a team - all of them, from the guy who changes the towels, through the cleaners, to the senior medical staff. I've never experienced anything like it. Usually, I don't like the term "my co-worker...", but at SIUH a junior nurse could use that term of Dr Lederman or vice versa and it would be quite genuine.
The MRI was followed by a long consultation with Dr Lederman. Part way through which he brought in two other people. I have described this as his TV Chef act - "Here are two I did earlier". Dr Lederman then left us, "So that they can say what they like about me". One was a young American (well, I would say 35-ish, that's young to me) who had been treated about 18 months earlier. He was back that day for a routine hearing test and was delighted to report a measurable improvement. The other was a South African who claimed to be 71, (looked more like 60 to me and acted more like 30!). He was Gerry, whose story you will also find on this site. Needless to say both these patients were totally impressed by their treatment - in all senses. (Eventually, I also had the pleasure of meeting a third former patient, S.B. Lewis.)
I was then fitted for the relocatable headframe, a process I found fascinating. The two skilled technicians worked very quickly, but were still able to answer al the many questions my wife (and I when they didn't have stuff in my mouth) needed to ask. Dr Lederman then returned, continued the consultation until he was happy that all our questions had been answered. The total time with Dr Lederman was well over an hour. When we left the hospital at about 7pm, he was still working.
The following Monday, I had the CT scan. This undoubtedly is the worst part of the treatment, but then, it is necessary for microsurgery as well and for that option it would be the best part! The CT scan is conducted whilst in the headframe and the the only bad part of it is the injection or contrast dye into the blood stream. This does not hurt but it did make me feel "odd" for the rest of the day.
That afternoon, I had a very short consultation with Dr Lederman then my first treatment. Gerry has described the treatment so well in his story, that I refer you to his account rather than try to compete. As an engineer, I did however note that the equipment appeared to be very well engineered and the technicians operating it seemed very knowledgeable - no mere button pushers here!
I had three more treatments at two to three day intervals and flew back to England the day following my last treatment, two weeks after my arrival...
Now, on the 1 June 1998, I am feeling much better than before. I don't know if it's too soon to be experiencing any direct effects of the treatment, perhaps it's just the warm weather, but the earlier facial numbness and headaches and even the tinnitus seems less on some days.
I am happy to discuss my tumor, my treatment and how I selected it with anyone who cares to correspond with me by e-mail.
Chris <chrisottewell AT onetel.com>
(Sep. 1998) Despite writing to my hospital informing them I had been treated elsewhere, I recently had a letter informing me that my "immediate" surgery would be at the end of October 1998 - 16 months after diagnosis - So much for efficiency...
(Nov. 1998) Following my treatment I have been lucky and my balance returned very rapidly as the tumor (I am told) shrunk and relaxed its grip on the balance nerves. Last month, 6 months after treatment, I had my repeat tests at Southampton and they confirmed that my balance had returned to completely normal; i.e. as good as if I had never had an AN! My hearing was also tested; while it is subjectively better, the test results are the same (as you know there is a wide margin of error on these tests, so I am hopefull that there is indeed an improvement).
(Apr. 1999) I had a 12 month check last week. It showed my balance now to be significantly better than average for my age, but a slight deterioration in hearing at the higher frequencies (it was next to nothing there anyway!) The MRI says that the tumor size is unchanged. I feel well and not only have I worked normally throughout, but I have recently been promoted at work.
(12/99) I found an un-processed roll of film the other day. It has a
few pictures of Dr. Gil Ledermans visit on it, two of which I have scanned and attached.
We are (left to right): Dr Gil Lederman, Yvonne Tommis, Peter Hong, Chris Ottewell and Andy Hare (The Principal and some UK Graduates of SIUH!).
Yes, there are treatment options for Acoustic Neuroma other than surgery and here is the living proof!
The picture was taken in the Dining Room of an 18th century English Pub in a small town wit the delightful name of "Chipping Sodbury" on 7 July 2000 at about 9:30 pm after an excellent meal (and the odd drink or two!)
Seasons greetings to one and all!
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Last Edited: Friday, November 22, 2002