John & Del Barwick - Acoustic Neuroma Patient Archive

My wife was shown an MRI in November of 2000, which showed a 27mm x 22mm x 16mm tumour and we were immediately referred to a surgeon. As I am a keen internet freak I began to search for the Vestibular Schwannoma and found the AN Archive. It is wonderful how much more in control of your life you feel when you know that there are alternatives to surgery, and you have the information to be able to quiz the doctor to get what you need for a decision.

As expected the surgeon told us that the internet was a dangerous pastime for non-professionals who could not sort out the truth from the lies and advised that my wife should have surgery soon. I did however, by insisting, get him to refer us to a doctor who uses FSR at a private hospital in Brisbane. When we went to see him he told us that they had only done 6 in the 2 years that the machine had been installed mainly because few patents know about alternatives to surgery. He said that the 6 had been a success and they had done one almost exactly the size of my wife's as their first one. He did say that they would be quite happy to treat her, but of course explained the risks with the treatment. I asked him to refer us to Dr. Robert Smee at the Prince of Wales hospital in Sydney as he has had the most experience with this type of tumour in Australia having done them for 10 years now.

We flew down to Sydney on 14th Dec 2000 and had a consultation with Dr. Smee at the Prince of Wales hospital. After looking at the MRIs, he said that he had treated neuromas much larger than Del's, and said that he was perfectly willing to treat her. He told us that he was using a slightly smaller dose of radiation than previously, but that he was still getting a 96% kill rate on the neuromas, with less than 2% facial nerve damage, less than 2% trigeminal nerve damage and 1% of other possible damage.

We booked to go into the hospital in late Feb 2001. On arrival they did a full assessment of all functions which could be affected by the neuroma and did their own set of MRIs. From there the treatment went to planning and the mouth piece was made up. The treatment consisted of 15 fractions with a total dose of 40 Gray. The machine used was a Siemens, fitted with a Radionics micro multi leaf collimator and set up to use IMRT. See http://www.radionics.com/company/pr/021501_imrt.shtml . We then flew back home after the treatment.

We have just returned from our 6 month check up in Sydney and had another set of MRIs done. These showed that the neuroma had not increased in size, but most significantly the internal architecture of it had altered and was less dense than it was 6 months ago. Del has not had any side effects from the treatment as far as nerve damage goes. At the moment it looks really good on both fronts, but Dr. Smee said that it can show up as late at 9 months after the radiation.

I have photos of all the treatment and equipment. If anyone would like any more information or photos I took please let me know by e-mail. Thank you once again, AN Patient Archive, for the information you have made available on your site.

(12/05) Del visited the radiation clinic where she was treated in the Prince of Wales hospital in September 2005 after an absence of 2 years, as the doctors had said 2 years previously (September 2003) that they didn't want to see her again until September 2005 as they were quite happy with the signs and the MRI.
At this visit another MRI was done and it appears that the tumour, while it is still the same size, is showing no signs of life.

The decision was that they don't want to see Del again for another 2 years and if at that time the tumour has not altered or has shrunk, they said that they would discharge Del from the treatment program. This sounds good news to us.

As far as symptoms or side effects are concerned, the giddiness and nausea which Del experienced off and on both before and after the treatment has gone. Her sense of balance is much better as it seems the balance centre in the brain is now getting more consistent messages. She has lost the hearing (and balance) in the affected ear but that was largely gone when she started the treatment.

She has been doing Tai Chi a couple of times a week to help her with the balance and this seems to have worked as her balance is quite good now. So all in all we are very happy that we went with the radiation treatment, and would strongly advise any newly diagnosed person to at least have a good look at it before opting for surgery.

(11/02) In late September this year Del and I flew down to Sydney for another MRI and a visit with Dr Bob Smee. This was exactly 18 months from the radiation treatment.

Whereas on the last MRI (6 months after treatment) there had been a solid white mass of tumour, this time there were large portions of dark areas right through the tumour. Even the areas which were not black were not as white as they had been, showing that they were changing. So it seems that for us the treatment at this stage is a success. The external casing of the tumour is still much the same size, but its internal structure seems to be disappearing. Rob Smee said that this was as good a result as they had hoped for.

Del has not had any side effects like loss of nerves or paralysis of any kind. Rob Smee did a check on the sensations in the face and other parts of the head and upper body and strength tests, and it appears that Del is exactly the same as before she started treatment. She is probably a bit more "giddy" at some times than she was before treatment and her hearing in that ear is much worse. But if she had had the surgical procedure the way it was proposed she would have had the nerve removed with the tumour anyway, and wouldn't have any hearing or balance in that ear. Also the "giddy" thing will probably even out when the balance centre in the brain learns to adjust to the new situation.

Del will be going for another MRI in September 2003, and if all is OK she will only have one every 2 years from then on. So, all in all, it seems the radiation has been for us a complete success.

©	To John & Del's entry in the Patient Directory
FSR in Australia John & Del Barwick's story