To Bob and Sandy's entry
in the Patient Directory
Convenience should not be a consideration
Bob Gilbert's story
My wife Sandy was diagnosed in May of 2001 with a 2.2 x 1.9 x 1.8 cm Acoustic Neuroma (AN). Her symptoms were decreased hearing in her right ear, slight facial numbness, some light headedness, and fatigue. The ENT doctor sent her to a neurosurgeon, who explained the surgery procedure and said it was the only option. We had learned about Gamma Knife (GK) and Fractionated Stereotactic Radiosurgery (FSR) from searching the Internet. We asked him if he could talk to us about those treatments. He got very upset, said that is for people who refuse to have surgery and is not curative. He then turned and just walked out of the examining room. His assistant came in a few minutes later and said if we wanted to schedule the surgery to call for an appointment.
Our research has been intense since then. Much of what we learned about surgery, Gamma Knife and FSR treatments can be found at http://www.ANarchive.org. I will not post that information here as it would be best for you to explore that site. That is the best site I have found and it also has links to many other great sites regarding the understanding and treatment of ANs.
Surgery was ruled out very early in the process. The complication rate, which include the possibility of death, was just too great a risk when there are other very viable options. Before Gamma Knife and FSR surgery was it. With new technology and micro-surgery I believe surgery has come a long way but still has greater risk than reward compared to GK and FSR.
Having narrowed it down to GK and FSR we began to compare the risk to reward between the two. This was a bit tougher as the two have compelling arguments for each. After studying the data from several clinical reports GK seems to have a much higher complication rate. One problem with comparing GK to FSR is that GK has been around many times longer than FSR. The complication rate for FSR appears to be smaller but the long term effect of the radiation dose used still needs to be born out.
The risk to reward has to go to FSR. Now this is where it really gets tough. In my opinion there are only two hospitals, from the research I have done, that I would consider for FSR. Johns Hopkins University School of Medicine (JHH) in Baltimore, MD and Staten Island University Hospital (SIUH) in New York. This is due to the standings of both of these hospitals, their staff and past research and success rate using FSR. Dr. Lederman at SIUH and Dr.Williams at JHH are both outstanding and respected doctors in their field with great credentials. They both have had great success and have been using FSR for ANs for the longest period of time. They have treated the largest number of ANs using FSR and have done the follow up studies. These studies can be gotten from their web sites or calling the respective hospitals and requesting a copy.
I have personally talked to and corresponded with patients of both doctors. I heard nothing but praise regarding both doctors, their staff and respective hospital. Not having been to either clinic or meeting either doctor it appears both could be the top choice. There is, however, a radiation dose difference in the treatment regimen of these two great doctors. The JHH regimen is a total of 2500 rad given in 5 consecutive daily fractions of 500 rad. The SIUH regimen is a total of 2000 rad given in 5 consecutive or alternate days of 400 rad for ANs over 3 cm. For ANs under 3 cm they give 500 rad over 4 days which still totals 2000 rad.
Both of these doctors have published reports supporting their treatment dose and their near 100 percent success for their respective treatment. They both have very compelling arguments for their radiation dose. I have asked Dr. Williams for further support of his treatment dose. Here is Dr. Williams response:
"Dr. Lederman should acknowledge that his dose is too low because of the failures that have resulted from his regimen. I know, as the patients have sent the MRI studies to me, asking if additional FSR is possible (it is not). The JHH regimen is 2500 rad given in 5 consecutive daily fractions. This dosage ensures durable control of the AN (killing of the AN)."
I have not contacted Dr. Lederman but need to as he states in his study "That we have currently treated nearly two hundred patients and have had no treatment failures would suggest that the dose of 2000 rad is most likely adequate especially in terms of the longer follow up and less toxicity compared to Johns Hopkins." [Editor's note: In his exclusive inerview with the AN Archive, Dr. Lederman acknowledged the 1% failure rate, and also discussed the difference in radiation dose between SIUH and JHH].
The latest JHHs latest report on 249 patients over 7 years states: "No patient had tumor growth", "no patient required surgery" and "no patient developed new facial weakness or diminished facial sensation". One can readily see there is disagreement on the dose used to perform FSR.
I believe our search is near its end. Understanding the benefit or lack thereof between the different radiation doses should be the last step in a short but long journey.
In summary, I believe FSR, because of its success rate in controlling the growth of the tumor with the least complications, to be the first choice for the treatment of acoustic neuromas. Gamma Knife would be a close second with surgery being the absolute last choice.
Because surgery was ruled out early on due to the high complication rate I have not researched the doctors or hospitals which provide this service. After much research into Gamma Knife my choice for that treatment would be Dr. Dade Lunsford at the University of Pittsburgh School of Medicine. As with JHH and SIUH they are a renowned facility and they have an impressive 5 year study showing great results over surgery. They state between 1992 and 1997 and treating 190 patients their tumor-control rate (no requirement for surgical intervention) was 97.1% + or - 1.9%. The percentages for the different complications were also very low.
There are many hospitals and doctors who treat acoustic neuromas. Deciding which one and which treatment is a difficult decision. It is a personal choice depending on many factors, your age, the size and location of the tumor and how you will psychologically deal with each choice. Once you have made your choice of treatments the next most important step is to find the best, not second best, but the best doctor to perform that treatment. There is no substitute for getting the best when it come to medical treatment. Convenience should not be a consideration when it come to making your choice of where to go for treatment.
If anyone would like more detailed information on any of my research I will try to supply it in a timely manner. You can e-mail me at <alwaysakid AT aol.com>.
Bob Gilbert <alwaysakid AT aol.com>
(7/01) Since I wrote my story, Sandy has made her choice and is having treatment at Johns Hopkins from Aug. 15th to Aug. 21. It was a close call between JH and Staten Island. Sandy and I both feel there is no supporting evidence that there is any added risk to the higher dose. Her main objective is to stop the tumor from growing.
(2/02) This is the long overdue conclusion to Sandy's research and treatment of her AN.
Sandy made her decision to have FSR at JH for two reasons. One was the patient concern demonstrated by Dr. Williams. His personal and professional manner made him the doctor of choice. But the most important reason was the radiation dose and results. Although they are short term, as are all FSR results, the Johns Hopkins FSR dose regimen has the highest success rate with the least complication rate.
We were lucky as we have family living in Philadelphia and several friends that live within an hour of Baltimore. We flew into Philly and my brother loaned us a car for the whole time. We stayed at the Holiday Inn Express that is about 30 minutes from the hospital. It is one of the many hotels that offer discounts for out of town patients of JH. You can get a list from JH. The Holiday Inn actually gave us a lower rate than was quoted on the JH list. We are also lucky that Sandy and I are both covered by great insurance. They paid the entire cost of Sandy's treatment. However, convenience and cost should not be a factor in deciding which treatment to get.
Monday, Aug 13, 2001 Sandy had her consultation with Dr. Williams at 11 AM. Dr. Williams was very personal and direct. He didn't rush us and answered or clarified any questions we still had. Then they made the mask to hold her head in position during the FSR treatments and took a CT scan with the mask in place. We were done at 4 PM. Sandy felt more confident than ever that this was the right, if not the only, treatment for her tumor.
The mask making was a little tough but Sandy got through it. They put her head in a vice with soft netting in the bottom. Then put soft netting over her forehead, nose, and chin. Then put a soft plastic piece in her mouth and said bite. Then they clamp everything tight and as it hardens it shrinks. Her head is now not going anywhere. With Sandy being claustrophobic I don't know how she got through this without being sedated. She had to stay in the mask while they did a CT scan that takes about 30 minutes. Total time is now about 90 minutes having her head confined. She said by the time it was over she just wanted to get out of there.
She was very shaky when it was over. This was due to her being claustrophobic and having her head confined for about 2 hours. She was fine after about 30 minutes. We went down to the harbor to the outdoor bar at the Hard Rock cafe to relax and have a drink.
Tuesday, Aug 14. There is a day between the mask making and initial CT scan and the actual treatment. This is to allow Dr. Williams and his staff time to study and chart the treatment. That day, we took the train to Washington, DC for the day.
Sandy was scheduled to have 5 treatments over the next 7 days as there is a weekend and they do not do treatments on the weekend. Sandy's treatments were scheduled for 9 AM on each day. She didn't want to be sedated for any of the treatments, as she wanted to be alert and enjoy the rest of each day in Baltimore. Sandy's treatments were usually done by 10:30 AM. This gave us the whole day to enjoy the area. Baltimore has a great harbor area with lots to see and do. You can take the Water Taxi boat for a ride around the bay for just a few dollars. Your ticket is good all day and you can get off and on at different stops. There are many great restaurants and some of the best crab cakes I've ever eaten. We were able to meet with our friends for dinner on several nights.
Wednesday, Aug 15. Sandy had her first radiation treatment. It was much easier for her than the mask making. She lies down on the table and they put her head in the mask. They tighten it up so her head cannot move. Then they take a few x-rays to check for positioning. After confirming everything is lined up and ready to go they start the radiation treatment. This is different that we expected. We thought it was going to be one shot of 500 rad. But they turn on the radiation for just a few seconds and then readjust the machine to another angle and radiate for another few seconds. This was done about 11 times. Dr. Williams explained that this is to get the tumor from all angles and keeps any dose to surrounding areas to a minimum. Each shot is small and the total dose for each day is 500 rad.
Dr. Williams was there during the entire treatment. He was well aware of Sandy's claustrophobia and was very compassionate and understanding. He tried to get the treatment done as quickly as possible. The treatment took about 45 minutes and Sandy was shaking for about 45 minutes afterwards. She was feeling tired but had no added symptoms or pain. Again her tiredness and shaking was due to the stress of being confined, not from the treatment itself.
Thursday Aug 16. The treatment today went the same as yesterday. Sandy was a little more comfortable and handled the confinement much better. Sandy only had the shakes for about 10 minutes. We went into the old part of town and had a late breakfast. Then she took a nap so she could enjoy the rest of the day.
Friday, Aug 17. This was the best day so far. Her third radiation treatment went very well. Sandy is dealing with "The Mask" better each day. Plus the Doctor is very understanding and talks to her a lot during treatment. She actually felt pretty good after this treatment because she knows she does not have another treatment till Monday.
We spent the weekend between treatments with family in Philadelphia.
Monday, Aug 20. Each treatment seems to get easier for Sandy. Today she only had the shakes for about 5 minutes afterwards. She is getting used to the mask and knows she has only one more treatment to go. She thinks Dr. Williams is going to cure her claustrophobia as well as kill her tumor.
I relayed a funny story to Dr. Williams that day. That morning I got an e-mail from Eric in Israel (he is trying to decide which treatment to have for his tumor and I have been keeping him up to date on Sandy's treatments). He asked me to explain "the shakes" that Sandy gets. He said he has never heard of this complication resulting from the radiation treatment. I explained it was not the treatment but the mask confinement that caused "the shakes." Dr. Williams enjoyed that story. He also said to be sure everyone knows the treatment does not cause "the shakes."
Tuesday, Aug 21. Today was Sandy's last treatment and everything went great. Dr. Williams, myself, and everyone involved with Sandy's treatment, told her how proud we were of her. We all knew how tough it was for her to get through the treatments without any sedation. Other than the claustrophobic issue the treatment was uneventful and painless. There were not side effects or discomforts associated with any part of the treatment. That night we took the Water Taxi for another ride around the bay. Then we had a late night romantic dinner by the bay to celebrate.
Wednesday we flew home to Las Vegas. Now we just have to wait for the 6 month MRI on Feb. 14, 2002 to confirm that the tumor is dying. I will post the results as soon as they are available.
Everything I have stated here are my observations, opinions and conclusions based on Sandy's and my research. Statements made are my own and are my personal opinions based on my research. Everyone needs to do their own research and come to their own conclusion as to the right treatment for their individual circumstances. Surgery, Gamma Knife and FSR are all options for treatment of Acoustic Neuromas. There are many doctors and centers that do each of these procedures. As I have stated earlier, convenience and cost should not be a factor in deciding which treatment to get. The best doctor and center should be your first and only consideration when getting medical treatment.
(3/02) Here is Sandy's 6 month MRI report.
February 20, 2002
Dear Ms. Gilbert:
Thank you for providing the most recent cranial MRI dated February 14, 2002. For comparison the prior MRI dated May 16, 2001, and the images taken at the time of simulation are available for review. The current study shows dramatic decrease in enhancement (brightness) across 90% of the transverse area of the treated acoustic neuroma. This decrease in enhancement is dramatic and signifies killing of the acoustic neuroma cells. Importantly, there is no evidence for toxicity or adverse effect in the surrounding normal brain.
In summary, the MRI has the desired and expected appearance at this relatively early juncture following FSR. I am optimistic that the current decrease in enhancement predicts eventual decrease in size of the killed acoustic neuroma.
As you have completed FSR in August 2001, please have the next MRI, along with the audiogram in approximately six months and have these studies forwarded to my office for review.
I appreciate your help in providing these studies. Please reply with any questions that you may have.
Jeffery A. Williams, M.D.
Bob Gilbert <alwaysakid AT aol.com>©
To Bob and Sandy's entry in the Patient Directory
Last Edited: Wednesday, October 30, 2002