Strong in my Convictions
Mike Del Grande's Story
Getting ready for treatment
My first "hearing issues" occurred in 1991 when my cold wasn't clearing up and my ears were clogged. I had seen an ENT specialist and had taken a hearing test.
After this time I never felt well, tired a lot and told a colleague that I felt as if I was popping brain cells. In January of 96 I went back to the family Dr who sent me to another ENT specialist. Hearing test was done once again and I was told to take more antibiotics. My mental state was not right and could not pin down why I felt de-energized. My Doctor suggested anti-depressent drugs.
I changed family Doctors and again was directed to another ENT who sent me for another hearing test. After this test I was told that my hearing was down a little but no big deal. At that point I insisted that something was wrong. The audioligist agreed to do a "Bell" test, the one that measures the time it take for a clicking sound to get to the brain. Two weeks later I was asked to take a letter to the ENT. I knew something was up. I was directed to take a CAT scan and shortly thereafter I was asked to sit down and saw the shocked look of my ENT. I had an ACOUSTIC NEUROMA, in my left ear.
The diagnosis was in late September 1996. In early November, I had an appointment with surgeons at Sunnybrooke hospital in Toronto, and surgery was scheduled for December 18th. It was surreal; I couldn't believe this was happening.
My sister called the AN society of Canada and I took time off work to research this ailment. The surgical options looked bleak especially with my diagnosis. I called surgical patients and then I ran into an Internet posting about something called Gamma Knife and about Dr. Noren. I called Dr. Noren and sent my CAT scan pictures to him.
Note that every Doctor I spoke to told me that ... if I was his brother I would have... surgery, gamma, radiation etc... Tough decision to make. My decision was made with my wife and some spiritual incidents that occurred which pointed me to Rhode Island. What were they, you say? Well:
When my grandmother died she left exactly $90 in an evelope which was hanging around for 2 years. My wife asked me about it and I said at the time... "I cannot remember what she wanted me to do with it but I know at some point I'll know what to do". Well when I sent my pictures to Noren it cost me $55 for the prints and $35 for FED EX. I had $85, I had $100 but not the exact $90. I now new what the $90 was for!
That Sunday I watched "Cops" on Fox and the program was from Providence, Rhode Island. There was a message there for me.
With $25,550 US in hand and the approval of Dr. Tator, one of the very few nurosurgeons in Canada to approve Gamma Knife treatment, I made a claim to the Provincial Health Plan and took off to Rhode Island. I was concerned that I would wake up one morning and have my hearing gone forever.
When I came back, I had an appointment for early December with an OHIP doctor touting Linac. My research had shown that there was no literature on fractionated Linac but plenty on GK. In addition, the Dr for OHIP had done only two ANs that were so large that they were inappropiate for GK. I was not prepared to be a guinea pig and help boost his numbers.
An earlier tribunal case involving Irma Arnold had held that single-session Linac was not equivalent to GK. The new game was that Linac was being delivered as fractionated and could now be considered equivalent to GK, therefore no re-imbursement.
We had a long drawn out hearing with skirmishes in March with the big battle in Dec'97. The government hired a top name law firm to fight me, delay me, frustrate me. Everything was against me except I was strong in my convictions.
I had Dr. Noren and Tator, as well as oncologist Dr. Gamel from Alabama as my expert witnesses. Costly yes, but I was carrying the torch for other patients as well who contributed towards the cost. We are still awaiting a decision, after 8 months. The case will have to resolve the following questions:
This is a personal testimonial of the difficulties as a patient to receive proper info and the right to chose a treatment best suited to one's circumstances.
Mike Del Grande <delgrandem AT rogers.com>
416 490-2629 Office (best place to reach)
I'm as mad as hell and I ain't going to take it anymore---Peter Finch
I don't take bullshit from anybody--Rodney Dangerfield, Back to School
(2/99) It was a long drawn out legal battle and after a year waiting for a decison, I received a ruling in my favour. The Health Appeal Board ruled in January of 1999 that "Based on a balance of probabilities, and relying on the facts that there are more follow-up studies and experience in treating acoustic neuromas with Gamma Knife than with factionated LINAC, the Board finds that stereotactic radiosurgery by fractionated LINAC and Gamma Knife are not equivalent treatments for an acoustic neuroma at this time. As they are not equivalent, and Gamma Knife radiosurgery is not performed in Ontario, the appellants fulfill the requirements set out in 28.4 for approval of full reimbursement.
I had to bring expert witnesses including an oncologist who worked with both Linac and Gamma. The only available literature I could find on Fractionated Linac was an article by Virtollo et el. This dealt with a small group of patients over a short period of time. Gamma literature is overwhelming. Dr Kondziolka from Pittsburg has published numerous documents and studies alone not to mention other published and peer review material the world over. There are no Gamma Knife facilities in Canada and Provincial Governments across Canada are paying for out of country costs for Gamma Knife. I have read the hope of patients who have opted for FSR using Linac. Perhaps the technique may prove to be equivalent but I could not not find the research to prove this at this time. There is a need to publish more data and peer review on Linac. It is unfortunate that so many patients are not even told of a technique which has been available for over 30 years and has been proven successful for so many patients myself included.
(7/03) I had my Gamma Knife in November of 1996 and I am leading a back to normal life other than a reduction (but still hear) in my left ear. My acoustic was 2.5 cm reduced to 1.7 two years later and still stable.©
Last Edited: Thursday, August 14, 2003