CK Update - 8 year report

[Mark]

Today, I met with Dr. Chang at Stanford following an MRI to review status of my AN 8 years after I was treated in November of 2001.

The "patient" part of the discussion was fairly short

The tumor carcass was unchanged from the 6 year check at roughly 1.5 CM , down from it's original treatment size of 2 cm

Subjectively, my hearing remains unchanged from the pre-treatment level but I still need to schedule an audiogram. Stanford had scheduled one for me today immediately following the MRI, but I canceled it. Somehow having it 15 minutes after having the MRI jackhammer my hearing for 45 minutes seemed a bit of a disadvantage 

Everything else is fine and unchanged, never had any facial or balance issues before treatment and have none now.

So what did we talk about for the rest of the appointment, some highlights were:

1) we made fun of Steve Girard, OK sort of kidding about that one, but we did talk about the number of former CK patients active in the ANA forum since I was first treated back in 2001

2) We discussed the possibility of Stanford supporting an ANA support group in the SF Bay area. Apparently there are something like 125 ANA members and no support group in the area. Dr. Chang has been approached by the ANA and offered that while it would be a patient lead group,  Stanford might be willing to provide meeting space and admin support. More importantly, they might be willing to provide "guest speakers " from the faculty on various AN related issues, which in my view would be an incredible opportunity. I told Dr. Chang that I would be willing to help out in getting it started, so if you live near SF and would be interested, send me a PM

3) The updated Stanford study of AN's treated by CK should be published early in 2010. It is currently in powerpoint form and has been presented at various neurosurgery conferences as part of the peer review process. Dr. Chang indicated that all of the numbers in terms of tumor control , hearing and facial nerve function preservation remain at the levels of the previous study. One interesting comment was around the long term impact on hearing. If I understood correctly, as the number of years post treatment increases there is a higher percentage drop in level of hearing retention. However, the data tends to suggest that those who retain a high level of hearing after treatment and through the first couple of years, tend to maintain hearing long term. Those who experience some degree of loss immediately after treatment tend to have continued loss a number of years further out. so at 6, 8, 10 years out the average hearing level shows a decrease but it reflects the divergence of those maintaining hearing  combined with those who experienced initial and further loss over the same period. Hopefully, that made sense

4) there are now over 180 CK's installed worldwide

That's the recap, obviously a visit that was enhanced by continued positive results   

Mark

 

[sgerrard]

Hi Mark,

Glad you and Steve Chang enjoyed yourself. 

It is surprising that there is no ANA group in the Bay Area, and I agree that having Stanford donate some speakers could make it a particularly good group. Did Dr. Chang mention any travel budget by chance, for visiting other west coast cities located in, say, Oregon? Are you going to be the group leader, at least starting out?

I followed the explanation of the hearing result, I think. It has been hinted at before. While the average hearing level does indeed drop over time, it is actually splitting into two groups - those who retain most or all, and those who lose quite a bit over the years. I have a feeling you will be in the first group, and I will end up in the second. None of us are actually average.

Oh yes, and good to hear that 8 years later you are still doing fine.

Steve

[Mark]

Thanks Steve,

I was also surprised that there was no ANA support group in the Bay area. I had gotten letters in the past from ANA asking about starting one up, but assumed it was for a chapter and that others already existed. I told Dr. Chang that I probably didn't have the band width to take on a leadership responsibility for the group but would be willing to help get it started and be involved. Although, his offer of using Stanford admin resources as the point of contact to eliminate all of the "when, where, how do I get there" phone calls might make it less time consuming and easier to handle. At this point, I volunteered to see what interest there was from this site and to help where i could. I'll check with him on the travel budget 

You understood my explanation of the hearing trends perfectly. Why I thought it was notable was that I hear a lot of newly diagnosed patients being told by surgeons that while you typically will lose hearing as a result of open surgery , you ultimately will lose it in radiosurgery over time as well. I assume they make those claims based on the reported average on long term follow up. After I sent the first post I thought the better way to illustrate the point would be to use an example of 2 radiosurgery patients

Patient 1 - lets say has 80% hearing and it remains unchanged at year 2, 4 and 6
Patient 2 - Has 80% pre-treatment, but shows loss immediately following to 70% and will probably continue to have some deterioration so at year 2 they are 60%, 4 they are 50% and 6 they are 40% and it stabilizes there.

So at year 6 in the study the average of the two patients is 60% vs. 80% before treatment, so the claim is that people continue to lose hearing after radiosurgery. That's just an illustration of how you need to examine the data and to your point, no one is average 

Mark

[sgerrard]

While you typically will lose hearing as a result of open surgery, you ultimately will lose it in radiosurgery over time as well.

I have never understood that argument from the surgeons. In my case it is most likely true, but I think that losing hearing over time is way better than losing it immediately. Even if my left ear is no longer hearing when I retire, it is working today, and I am quite happy about that.

More important for patients considering radiation is that they may fall into the group that, like you, retain their hearing at treatment level for many years, especially if they have very good hearing going in.

Steve

[Jim Scott]

Mark ~

Congratulations on your positive 8-year MRI report and your interesting conversation with Stanford's Dr. Chang.  Steve has sufficiently discussed the salient portions of your post so I'll simply wish you a continued successful recovery and offer my hope that you can be an effective part of a new AN support group in the Bay area. 

Jim