FSR treatment for Acoustic Neuroma at SIUH and JHU
an informal survery by Eddie Beh

I. INTRODUCTION

I am a newly diagnosed AN patient.  Recently, I have sent over 40 emails, including those who went for FSR and those who are still watching and waiting, like myself. The final breakdown of responses as at January 28, 2000 are as follows :

SIUH (FSR)                         
JHU (FSR)                      
Other Establishments (FSR)   
Watch and Wait                     
Gamma Knife                
Surgery                              
11 replies
9 replies
3 replies
7 replies
1 reply
1 reply
Total : 32 replies

I have read and analysed all the responses.  I would like to express my gratitude to those who replied, as the all the information and advises are invaluable.

Below is my general summary and conclusions on FSR treatment for Acoustic Neuroma at SIUH and JHU. I will only comment on FSR at SIUH and JHU, as I feel that these two medical establishments are the best there is in treating AN and they have the most experience and expertise in this particular field.  I hope that it will be useful for those who are seeking treatment for their Acoustic Neuroma.

II.  RESULTS OF FSR

As Acoustic Neuroma affects mainly the hearing nerves, one of the main concerns is preservation of hearing after FSR. The hearing results following FSR:

  Better Same Worse Uncertain / Don't know Total
SIUH
JHU
Others
1
2
-
3
4
2
3
1
1
4
2
-
11
9
3

Please note that the results are only from the responses I received, and do not represent the general outcome of FSR as claimed by SIUH and JHU. For example, SIUH claimed that hearing in 15% improved after treatment, 70% same and 15% deteriorated.

Here is a summary of patient reports:

  1. Some patients have the same hearing after treatment, but very few has improved hearing.
  2. Everyone disagrees that FSR recipients will eventually be deaf over time and they don't recall their doctors/specialist saying so.
  3. Tumour size after FSR remains the same or decreased after treatment.
  4. No patients so far had to undergo surgery after FSR.
  5. Other that hearing deterioration in some cases, all suffer no additional side effects (such as balance and facial nerves) after treatment. Some even had improvement in their balance.
  6. None of the FSR patients regretted going for their treatment.

III. SIUH vs. JHU

  1. The services and staff at SIUH, JHU (and other FSR medical establishments) had been excellent. No complaints whatsoever.
  2. Dr. Lederman is the pioneer of FSR and has about 3 years more experience in FSR than Dr. Williams.  Dr. Lederman (SIUH) has done about 225 cases. Dr. Williams (JHU) approximately 100.
  3. The protocol and equipment at SIUH and JHU are similar. [Editor:  this is not quite true; to ensure proper positioning, SIUH uses a dental mold whereas JHU uses a facial mask; see patient stories]. 
  4. However, the dosage given are different. From the information I received, I understand that Dr. Lederman has been consistently giving the same amount of radiation per c.c. tumour treated (20 Greys) while JHU has been reducing their dossage over time. It could be that both establishments are using almost the same dossage now.

IV. CONCLUSIONS

  1. FSR patients likely to suffer no additional side effects other than the possibility of slight hearing loss after treatment.
  2. Expect to lose some hearing after FSR. Don't expect your hearing to improve.  In theory, the auditory nerves do not repair itself after FSR, although radiation causes the tumour cells to die and does not affect the healty tissues. Dr. Williams quotes that most patients are likely to retain about 80% of pre-treatment hearing 2 years after FSR.
  3. There is no truth whatsover in that all FSR recipients eventually becoming deaf.
  4. Possibility of tumour becoming malignant after FSR is very minimal, according to Dr. Lederman and Dr. Williams.
  5. It's difficult to decide where to have FSR done, but either SIUH or JHU would be the preferred choice due to their experience and expertise in dealing with Acoustic Neuroma.
  6. Should surgery be preferred, most experts recommended Dr. Brackman at Ear House Clinic in Los Angeles.

V. DISCUSSION

I understand that those who are still in the watch and wait group like myself, are facing rather difficult choices: should I wait and watch? if I decide to go for FSR, where? One SIUH patient quoted Dr. Lederman as saying that condition before FSR could be irreversible after treatment ( i.e.: would anyone want to wait until they suffer additional side effects?). Common sense tells us that the smaller the tumour, the less radiation would be needed, therefore less complications; but with rapid advances in medical technology, should one wait for better alternative solutions for Acoustic Neuroma? Please note that even FSR is relatively new (all the cases I reviewed received treatment within the last 3 years) [Editor:  my FSR case was reviewed, and is over 3 years ago; however, it is not at JHU/SIUH] and there is currently not much data to evaluate its long term effects.

I hope that my research has been helpful in some ways for those who are still watching and waiting. I would like to express my sincere thanks again to everyone who has replied. Do keep in touch. Thank you and god bless.

Yours truly,

Eddie Beh <rnrhorse AT tm.net.my>
Perak, Malaysia.

Last Edited: Wednesday, October 30, 2002