I am 72 years old and live in the Birmingham, Alabama area. I have had a hearing disability and tinnitus for the past 50 years as a result of military service and have worn hearing aids in both ears for about 20 years now.
I was diagnosed with an Acoustic Neuroma in my right ear about 5 years ago and I was in “watch and wait” status until this month (August 2019). When it was discovered, my tumor measured about 5 x 4 mm, or so I was told. I didn’t worry much about it at first since doctors were telling me that it was so small that it might not ever amount to anything or cause me any problems. I had MRIs and audiology exams to monitor changes on an annual basis at first and then later every 6 months.
By October 2018, my tumor had grown to 8.5 x 4 mm and the Otolaryngologist that I was seeing at the time suggested that I consider doing something about it. That’s when I got serious about learning more about ANs and what my options were. My biggest help was in joining the ANA and reading about Forum members’ experiences and what they learned in their journeys.
Early on in my research, I decided against a surgical option even though my Otolaryngologist suggested he perform the Translab procedure. He was a little too casual about it when I raised the issue of a complete loss of hearing due to the surgery and he told me “You can’t hear anything in that ear anyway”. My thoughts were that even though my hearing was bad, I could still hear something with hearing aids and I was not ready to give it up. Of course, I had other concerns about surgery and possible recovery problems as well.
I made an appointment with a radiation oncologist at the University of Alabama at Birmingham and met with him in January 2019. He was very personable and seemed quite confident that he could perform the procedure without any problems. He proposed using UAB’s Linear Accelerator (The Edge) with a Single Fraction Radiosurgery (not fractionated). It was my understanding that their Linear Accelerator had been upgraded in recent years for use with brain tumors and he claimed that it was far superior to a Cyber Knife or Gamma Knife. He also encouraged me to consider getting the procedure done as soon as possible to save what I could of my hearing. He told me that I cannot regain what has been lost but the sooner the tumor is treated the better the chances of saving my remaining hearing in that ear.
My April 2019 MRI summary noted that my tumor was now at 9 x 5 mm and that “The right cochlear and facial nerves continue to display anterior displacement”. Furthermore, my audiology test results showed that my ability to understand words in my right ear had deteriorated from 60% in August of 2017 to 44% in April of 2019. I was also starting to have some balance issues and it seemed that I was becoming less steady on my feet. I decided that it was time to get something done even though I had not noticed any other serious symptoms yet.
I still had some doubts on having the procedure done at UAB so I sent my records by Fed Ex to The Barrow Neurosurgical Second Opinion program. There is a $100 charge to get a second opinion from them. I was very disappointed with their response. It was hard to get anyone to answer the phone or respond to voice or emails and they couldn’t even find my records until a week after Federal Express said they had been delivered. I had to make a follow-up call to get them to look for my records in their mail room. When I finally got a report, it was somewhat generic and seemed to stress more of a surgical approach (I guess their name should have been a clue to me on that). The person who did the report was a neurosurgeon.
So, I realized that if I wanted to talk about radiosurgery, I needed to find an individual who specialized in that field and had a known reputation for dealing with Acoustic Neuromas. In going through the ANA Forum, Dr. Steven Chang’s name at Stanford comes up quite often. So, I put together another package of my past MRI’s and audiology test results and sent it out to Stanford. I was told when I called to get the mailing address that Dr. Chang does NOT do consultations over the phone. That was a change from what some earlier Forum members had reported.
The next morning after Fed Ex said the package had been delivered, Dr. Chang’s nurse called me and said that Dr. Chang had reviewed my records and he recommended a Cyber Knife treatment in three sessions. She suggested that I make an appointment and come in to discuss the procedure in more detail.
So, my wife and I made an appointment in early July 2019 and visited Dr. Chang in Palo Alto. It was a good trip and we were very impressed with Dr. Chang and his team. I had prepared a list of questions for my appointment and my list including Dr. Chang’s response is as follows:
1. From my last two MRI’s, does the comment that indicates the tumor is pressing against the facial nerve and cochlea affect the type of procedure that should be done? Can the tumor be effectively treated with radiation without damaging the facial nerves or cochlea?
Answer: Any AN will press against a nerve. So, my situation is no different than any other. Nerves and tumors have different tolerances for radiation and the nerves are less likely to be affected by the radiation than the tumor.
2. Even though my tumor is relatively small, do you see any advantage for continued Watch and Wait?
Answer: No. The size of the tumor as it is now is ideal for the CK procedure. Further Watch and Wait will not improve my symptoms and are likely to result in further loss of hearing (on a more rapid basis) and the development of other symptoms.
3. Even though my hearing is not good in my right ear, I do still have some function there, especially with hearing aids. Since the tumor is still small, is it likely that I will retain most of my present level of hearing in that ear after a procedure? Will it be likely to deteriorate in the future any more rapidly after the radiation?
Answer: Dr. Chang does not expect the CK treatment to affect my hearing one way or the other. It is likely that I will continue to lose my hearing over time but it will not be any worse than if I did not have the CK done at all.
4. My understanding is that you would propose to treat my tumor with a fractionated series in three sessions. Will they be on three consecutive days?
Answer: Yes.
- What is the advantage of doing the fractionated FSR approach rather than a single SRS delivery?
Answer: To reduce chances of hearing damage and swelling.
- How much radiation would be delivered in the three sessions? I have read that anything over 13 Gy can result in additional hearing damage.
Answer: The three sessions will be a little over 6 Gy each, however the cumulative effects are not the sum of each day’s dosage. The three sessions given one day apart provide an equivalent single dosage of about 11.5 Gy.
He provided an interesting analogy for this.
“If you were out in the sun for 45 minutes, you may be likely to get sunburned. However, if you spent time in the sun for 15 minutes on three consecutive days, your chances of sunburn are greatly reduced”.
- How long will each session last?
Answer: Monday will be about half a day with getting a new MRI and CT scan. There will also be a fitting for a mask on the first day.
The actual CK procedure will not start until Wednesday and the total time each day with the setup would be about an hour but the actual time on the CK machine will be about 20 minutes. Prior to starting the procedure each day, I will be given a steroid to control swelling and an anti-nausea medication.
- Can you generally deliver more radiation if the doses are smaller?
Answer: (See comment above).
5. I assume that you have a team of specialists who perform the procedure. How many people are involved and what are their specialties?
Answer: There will be four people involved; Dr. Chang, Dr. Pollum (radiation oncologist) and two mathematicians to determine the settings for the Cyber Knife.
6. It is my understanding that Dr. Chang also performs surgeries as well as Cyber Knife procedures. What percentage of the procedures that he performs are surgical and if he were to do surgery on me, what technique would he recommend?
Answer: About half of the procedures that Dr. Chang performs are surgical. If he were to do surgery on my AN, he would choose Mid Fossa.
7. I have spoken to a Radiation Oncologist at UAB (Dr. Bredel) in Birmingham and he proposed using a Linear Accelerator (The Edge) in a single session of 12.5 Gy.
- How do you compare the Linear Accelerator to the Cyber Knife? Are they comparable as far as accuracy and collateral damage avoidance?
Answer: Stanford also uses a Linear Accelerator as well as the Cyber Knife. Dr. Chang said that the Linear Accelerator has a wider beam than the CK and he feels that he can pinpoint the beam with greater accuracy with the CK than he can with the Linear Accelerator. Stanford uses their Linear Accelerator for larger cancerous tumors.
- My understanding is that the Linear Accelerator at UAB in Birmingham was upgraded several years ago and has only been used to treat Acoustic Neuromas for about the last 4 years or so.
Answer: My thoughts on this (not Dr. Chang’s) are that maybe the reason the LINAC was upgraded, was so that it could provide better accuracy. Dr. Bredel at UAB said his Linear Accelerator was more accurate than the CK. So, it is probably just a matter of preference and what they are used to.
8. What are the chances of re-growth after radiation and what would be my options if that were to happen? I have read where some have been told that surgery after radiation is not a good option but that additional radiation is seldom an option either.
Answer: For my case, less than 2% chance of re-growth. Regrowth chances are greater for larger tumors. If a re-growth did occur, Dr. Chang would not rule out additional radiation.
9. What are the chances of future malignancy due to the radiation?
Answer: About one in 20,000.
10. Will my tinnitus and balance issues likely go away or lessen after a Cyber Knife procedure?
Answer: No. Actually, tinnitus is not a symptom that is located within the ear. It is in the brain. So, surgery or radiation to the ear will have no effect on tinnitus.
- My understanding is that lost hearing will not be recovered
Answer: That is correct.
11. What side effects should I expect? …. swelling, headaches, fatigue, etc.
Answer: Possibly some minor swelling and headaches. Some people experience fatigue but Dr. Chang thinks that may just be due to anxiety of the patient rather than anything related to the CK.
- Will air travel after a procedure be affected (cabin pressure, etc)?
Answer: No.
- Will it affect my ability to drive a car? Can I drive to and from my sessions?
Answer: No problem with driving. Some people who live around locally go to work after each session.
- What about long term affects?
Answer: None that we have not previously discussed.
12. If we do the procedure there at Stanford, how long should I expect to stay in Palo Alto?
Answer: Come in on Sunday afternoon and be ready to start the Prep (MRI and CT Scan) on Monday morning. Then nothing for me on Tuesday while they do their calculations and make up the face mask. The actual CK procedure would be on Wednesday, Thursday and Friday and I can plan to go home on Saturday.
13. When they do the MRI, do they use a contrast dye without Gadolinium or other agent that could affect the kidneys?
Answer: This question was asked of both Dr. Chang and Dr. Pollom. Their response was that they were not aware of another contrast dye that did not contain Gadolinium. (I did not ask what they used if a patient DID have kidney disease).
I was told when I got my last MRI at UAB that they used a different contrast dye than previously and that this dye would not affect kidney function. I have since checked my MRI report summary and noticed that they listed the contrast dye as being “ProHance” and it is the same dye as was used at the previous three MRI’s. The difference was that the dosage was 10 ml this last time and previously it was 20 ml. Also, this last time they did NOT do the blood test to check kidney function.
14. When should I expect to have to return to Stanford for follow-ups after the procedure is done?
Answer: Probably no need to return to Stanford for follow ups. Follow up MRI’s can be done in Birmingham and sent to Dr Chang for review. He would like to see them at 6 months and 12 months following the procedure.
- After the first year, would you recommend follow ups every one to two years?
Answer: Yes.
15. I have my medical insurance through Medicare with an AARP Supplement which is administered through United Health Care. I want to make sure that my medical costs will be covered by my Medicare policies.
Answer: Stanford accepts Medicare and all Supplement plans.
So, based upon my confidence in Dr. Chang and his team, I made an appointment to go through the Cyber Knife procedure next week (week of August 19) and I will report that experience with my next post. I am hopeful that, with my tumor still fairly small, my post treatment issues will be minimal.
Ken
