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fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/20/2007 10:26 AM (GMT -8)

I just learned yesterday that I have an Acoustic Neuroma, about 2.5 cm in size, which he described as middle of the road. It is situated near the brain stem but does not appear to be threatening it. I presented with facial numbness on the right side of the my face, so the tumor is pressing up against the facial nerve. I saw a neurosurgeon who is recommending microsurgery. He estimated the odds of losing hearing in my right ear at 80% or greater. I am just started on exploring alternatives that might increase the odds of saving my hearing. I am only 34, which is part of the reason the surgeon recommended that route. Any advice/guidance/wisdome on the Cyberknife option would be greatly appreciated. Thanks.

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/20/2007 10:58 AM (GMT -8)

I see no reason for you not to be treated with radiosurgery. Get the nearest CK center to review the images. The risk of all sorts of problems is much lower with radiosurgery than with surgery. If the surgeon starts telling you about the tumor becoming cancer from radiosurgery, politely excuse yourself and leave. By the way, for all intents and purposes, the facial nerve has to do with movement of the face, not numbness. You may be getting some pressure on the trigeminal nerve on that side.

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net

Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/21/2007 10:14 AM (GMT -8)

Thank you, Doctor.

Some brief follow up questions if you will:

1. I have right side facial numbness and also a feeling of fullness or compression in my head. I have hearing in both ears but haven’t had auditory testing yet. I am leaning strongly in favor of CK because of the increased likelihood of retaining hearing. But I am trying to understand the cons. Apart from tumor size, are there any other situations where surgery is the preferred route?

2. Also, I understand that the tumor may die without any shrinkage and in that case, there is a possibility that symptoms such as my facial numbness will remain. Generally, in what percentage of cases do you see tumor shrinkage? And can necrosis without shrinkage result in an alleviation of the symptoms I describe?

3. I noticed that in an earlier posting that you make available to patients a power point presentation comparing the pros and cons of surgery and radiotherapy. Can you email it to me as well?
4. Finally, I am located in Los Angeles. Any insights on the CK team at USC/Norris? The other option is Stanford.

Thanks so much for this fantastic work you do.

Francesco

Post Edited (fb) : 6/19/2008 11:36:21 PM GMT

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/22/2007 3:51 AM (GMT -8)

1. WE use surgery only when the tumor is so large that we feel the need to debulk it prior to radiosurgery. In that case, we do not attempt total removal, just debulking.

2. Your facial numbness may or may not go away with treatment, regardless of the type of treatment chosen. Most of our tumors shrink somewhat, but a few just never grow. We often see relief of symptoms even without a change in the size of the tumor. Hopefully one of thesurgeons will see this and reply, but my guess is that having numbness now means you will be at somewhat higher risk of further nerve injury from surgery.

3. It is on its way. It is a couple of years old, but I think still valid. And quit reading old stuff I said. I hate being tripped up by previous pronouncements 🙂

4. Both centers are very experienced.

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/22/2007 4:03 AM (GMT -8)

Thank you, thank you, thank you!

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/23/2007 4:31 PM (GMT -8)

Hello Dr. Medberry:

The plot thickens. Earlier today, I met with two neurosurgeons (Keith Black and Gabriel Hunt) at Cedars Sinai Medical Center. They are recommending surgery based on the following considerations:

1. My age (I’m 34). They noted that if the tumor continues growing after radiation, the risks of surgery are greatly increased because of the texture of the tumor after it is radiated. I guess it becomes more adhesive to the nerves.

2. The position of my tumor, which is 2.5 cm, adjacent to the brainstem. They indicated there was a risk that radiation would touch the brainstem resulting in complications such as problems with swallowing.

3. Facial Numbness. Because the tumor generally will not shrink as a result of radiation, the pressure on the nerve causing right side facial numbness is unlikely to be relieved.

They would plan to go with the retrosigmoid approach. Dr. Black estimated the risks of total right-side hearing loss at 30%, a number which is much lower than what I have seen from other sources. He said this lower percentage was based on the fact that I still had meaningful hearing in the right ear. He put the risks of facial paralysis at less than 5%. Again, this seems lower than what my research suggests.

I am having a hearing test done ASAP. I am sure I have lost a percentage of hearing in my right ear, just not sure how much. I am guessing around 30%-40%.

Continuing to perform research. Would love to avoid surgery if possible.

Regards,
Francesco

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/23/2007 6:33 PM (GMT -8)

1. We have only had one failure, and it was removed easily and the neurosurgeon said it was no harder than others he had done. Age does not matter.

2. Hogwash, assuming the CK is done correctly.

3. Possibly true. Unknown. But see above post.

I doubt their toxicity figures.

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/26/2007 6:39 AM (GMT -8)

Hello Doctor,

I wanted to give you the latest. I have benefited greatly from our back and forth and hope that readers get something out of it as well.

I had a hearing test done yesterday. It showed mild right-side hearing loss in the high frequencies (0-20% is normal, my right ear showed around 30% give or take in the high frequencies.) Word recognition was perfect. On the other hand, I am increasing feeling like I have a tumor in my head — i.e., a sense of compression and sluggishness — which is quite distressing as it makes me worry that radiotherapy will be excluded as an option.

I have scheduled consultations with three additional neurosurgeons, including two that specialize is radiotherapy (Dr. Duma at Hoag in Newport and Dr. Chang at Stanford). The third is Dr. Slattery at House Ear Clinic.

My plan is to do the consults, absorb as much information as I can, and then make a final decision as to treatment, hopefully by mid next week. Based on my research so far, I am strongly inclined to a radiosurgery approach. My greatest fear is that my symptoms will preclude it.

Kind regards,

Francesco

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/26/2007 7:24 AM (GMT -8)

The symptoms will not preclude it.

Calpedaler
Registered Member

Date Joined Jul 2004
Total Posts : 64

Posted 7/26/2007 4:04 PM (GMT -8)

Franceso,

I’ll chime in on the Hearing and facial nerve preservation statistics you were given as I read them as amazingly optimistic. My AN was smaller than yours at about 2 cm and I was given about a 10-20% chance of saving usable hearing by Dr. Jackler , then at UCSF-now at Stanford as well as Dr. Chang and Dr. Schuer at Stanford. In surgery, the probability of hearing preservation decreases as the AN size increases and the odds of facial nerve impact increase as well, so I would think your results with a larger AN would be less than what mine were and I don’t think even the doctors at House Ear could deliver results as good as the docs at Cedars are promising. I think radiosurgery provides much better results in the medium size tumor range than surgery. In fact, if you did opt for surgery I would suggest that you talk to someone about Translab where you sacrifice the hearing, but generally have less risk to the facial nerve as I think it would be a long shot to save the hearing through retro on something the size of 2.5 cm

my 2 cents,

Mark

CK for a 2 cm AN with Drs. Chang and Gibbs at Stanford, November 2001

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/26/2007 6:01 PM (GMT -8)

Thanks, Mark. That has been the consensus judgment. I’m not sure what they were thinking when they quoted those figures but it has troubled me.

If you would be willing to share it, I would love to hear more about your treatment experience at Stanford and how things have gone since then in terms of tumor size and your symptoms.

Thanks again for your concern.

Regards,
Francesco

Calpedaler
Registered Member

Date Joined Jul 2004
Total Posts : 64

Posted 7/26/2007 7:11 PM (GMT -8)

Franceso,

I’d be happy to share my CK experience and , actually, my story is no farther away that this web site.

Go back to the home page and click on stories, then Mark’s Acoustic Neuroma. If you have any questions after that I’d be happy to talk by phone or e-mail separately. Only caveat is I’m heading over to the UK tomorrow for two weeks vacation, so will be out of pocket until mid August

Mark

CK for a 2 cm AN with Drs. Chang and Gibbs at Stanford, November 2001

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/30/2007 8:12 AM (GMT -8)

Hello Dr. Medbery,

Here’s an update on the latest. I had a consult with Dr. Christopher Duma, an experience neurosurgeon in Orange County. Dr. Duma is a microsurgeon and a radiosurgeon and has extensive experience with the Gamma Knife. He has treated hundreds of ANs, including approximately 300 or so AN’s with Gamma. He’s been using the Cyberknife since 2002 or so but does not treat AN’s with them (for the reasons listed below).

Thankfully, Dr. Duma’s considered opinion is that I should go with radiotherapy. Barring something completely unexpected, I absolutely plan to take his advice.

The next question I face, and it is a tricky one, is Gamma v. Cyber. Most doctors I’ve spoken with, formally and informally, practically assume Gamma is the way to go and know very little about Cyber. Dr. Duma (who does both) treats ANs with Gamma not Cyber. He has a two principle reasons for this:

 Most importantly, he noted that CN being relatively new, there simply are no studies out there verifying its success at tumor control in the mid- to longer-term time frames. He said the jury is still out on fractionated treatment of AN’s and he pointed to the period in the 1970s (or maybe it was earlier), when apparently older generation LINACs were used to give fractionated doses to ANs. He said the results of those earlier treatments showed far lower tumor control rates (on the order of 70%) and until CN is demonstrated to be different, it is too risky. He noted CN’s primary benefit – that it is 15-20% more successful in terms of hearing preservation – but said that benefit is not worth the risk.
 His second point – and I’ve heard this from a couple of doctors – is that GK is simply more accurate because of the head frame.

I will need to mull over this decision over the next few days. As always, any insights you can offer, or resources to which you can direct me, to help will be greatly appreciated.

King regards,

Francesco

marystro
Registered Member

Date Joined Jul 2006
Total Posts : 114

Posted 7/30/2007 1:50 PM (GMT -8)

Chiming in as well.

My AN is about the same size as yours, give and take. I went through similar symptoms worsening and due dilligence process as you are going through. My conclusion was CK as you can see in my signature. I am coming up to my 1 year MRI (next week) and remain optimistic. My and other stories of AN treated by CK is in the following link:

http://anausa.org/forum/index.php?PHPSESSID=c4a03f64f16a8b32aa5df7f7b667716a&topic;=3929.0

Feel free email me or others in the above link. We are all here to help and to give back. The doctors here are awesome. I could have never asked for more. * waving hi to Dr. M and S!!!*

Mary

Mary
July 2006 – 22 x 18 x 20 mm AN
August 2006 – CK at Stanford by Dr. Chang/Dr. Soltys
February 2007 – 22 x 19 x 19 mm AN

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 7/31/2007 2:42 AM (GMT -8)

THere is no reason to think CK will be less effective than GK, and the data to date shows the same 95-98% control rates. He is wrong about the accuracy. GammaKnife has a mechanical accuracy of 0.3 mm. But that does not take into account the inaccuracies of MRI versus CT, the inaccuracy induced by the head positioning system, and the inaccuracy induced by frame torsion. The problem gets even worse with mechanically set head positioning. THe OVERALL accuracy of the CK is variously reported as 0.5-0.89 mm, with most showing closer to the 0.5 mm for intracranial targets. OVERALL accuracy of the GK is 1-2 mm, depending on a number of factors.

Our radiosurgery group has experience with hundreds of AN’s treated for 10 years on GK and for 4 years on CK. WE exclusively use the CK now.

Your choice, but I personally would go with CK. Either one is highly likely to control your tumor

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 7/31/2007 3:57 AM (GMT -8)

As time marches on, orders around the country for Cyberknife, and also for other competing less accurate stereotactic radiosurgery systems, will greatly outpace the sale of new GammaKnife units. As a result, there will be much greater familiarity with CK and the proportion of patients treated with CK vs. GK will shift in favor of CK. There are so many advantages of CK over GK that it is hard for me to imagine that many facilities will opt to purchase a new, expensive, GK system, except perhaps for a neurosurgical bias at certain select institutions.

Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717

candtlaw
Registered Member

Date Joined Mar 2007
Total Posts : 203

Posted 8/15/2007 8:18 AM (GMT -8)

Francesco, Also 34 post CK of a AN 1cm. I will share my story with you if your interested as well. I am happy thus far with my decision of CK over surgery

Cyndi
5th and last treatment 04/30/07

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 8/17/2007 1:35 PM (GMT -8)

Hello All:

This is just a quick update on my decision-making process. I have decided to be treated with CyberKnife by Dr. Cheng at Stanford. My treatment is scheduled for next week (8/22-24), a little over a month after my initial diagnosis. With the help of all of you who responded to my messages, all of my concerns and questions about CN have been addressed. I’m 100% certain it is the best option in my situation. I’ve had to deal with some hiccups on the insurance front but fortunately, with the help of some kindly benefits administrators in my office, those have been ironed out. So it looks like I’ll be ending the summer with a bang — or, more accurately, a zap.

Thanks again to Dr. Medbury and Dr. Spunberg and to the former patients who took the time to respond these posts. I will always be grateful. And I will continue to post on my progress for the benefit of future members of our highly exclusive club.

Kind regards,

Francesco
AN diagnosed 7/18
2.2 x 2.3 x 2.9 mm

candtlaw
Registered Member

Date Joined Mar 2007
Total Posts : 203

Posted 8/17/2007 2:15 PM (GMT -8)

GL to you. Can’t wait to read your updates. I just know that all will work out……..Quite the club to belong to huh??? I will be thinking of and praying for you next week 🙂

Cyndi
post CK 04/30/07

marystro
Registered Member

Date Joined Jul 2006
Total Posts : 114

Posted 8/17/2007 3:00 PM (GMT -8)

Francesco,

Good luck on your CK treatment at Stanford. You have picked a worldclass team to treat your AN. My decision also went from surgery to GK to CK all within one month of diagnosis. My 1-year MRI follow up seems to be very positive (still waiting for official review from Dr Chang). You will be fine! Don’t forget the post-treatment wine toasting at the California Cafe near Stanford – it’s a tradition for us CK ANers there!!!

Keep us posted of your progress.

Mary

Mary
July 2006 – 22 x 18 x 20 mm AN
August 2006 – CK at Stanford by Dr. Chang/Dr. Soltys
February 2007 – 22 x 19 x 19 mm AN

radsrus
Registered Member

Date Joined Jul 2004
Total Posts : 7510

Posted 8/18/2007 7:16 AM (GMT -8)

Does Dr. Chang get to the wine toasting? If so, I’m moving to join the Stanford team

Jerome J. Spunberg, M.D.
Registered Member

Date Joined Feb 2006
Total Posts : 4214

Posted 8/19/2007 3:29 AM (GMT -8)

Me too.

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 9/19/2007 4:39 PM (GMT -8)

Hello All:

I wanted to provide a post-treatment update, as promised. I was treated at Stanford by Drs. Chang and Soltys on August 23-26 and I’m pleased to say all went according to plan. As others have written, the treatment itself is a breeze. The mask is somewhat uncomfortable but so long as you are able to relax and release and pretend that you are napping, it is not that bad. My family accompanied me to Stanford and they were thrilled when I walked out of my first treatment smiling and full of optimism. In fact, my family and I had a lovely week in Palo Alto, considering the circumstances. We visited Monterrey and Big Sur, spent a day in San Francisco, and spent mornings by the pool and evenings out to dinner and at the movies. I was at the gym and swimming laps every day.

We drove to LA from Stanford after my final treatment on Friday and on Monday I was thrilled to be back to work and back to resuming my life. I had to take it easy for two weeks or so after treatment. Pretty much went from work to the couch to bed. But by week three, I began visiting the gym again and resuming my social life, including salsa dancing, which was one of the things I feared losing the most.

The main symptoms I had prior to treatment were facial numbness, balance issues and some fullness and general weirdness in the head. The numbness is still around and I I still have intermittent balance episodes. The folks at Stanford recommended I take 2400 mg of ibuprofen a day (4 tabs, three times a day) for a week to reduce inflammation on the balance nerve. That is a helluva lot of ibuprofen, and fortunately, it worked. The balance issues cleared up after a day or two. I have been off the ibuprofen for a week now and am waiting to see whether the balance issues will recur. Stanford tells me that a regimen of steroids also is available to address balance issues if the ibuprofen proves ineffective.

I am thinking of writing up my experience, in particular my experience researching, consulting with specialists and arriving at a treatment decision, for the benefit of other newly-diagnosed patients and will keep you informed when and if I publish that work, most likely on a website.

To all patients, please feel free to email me at frbarbera@yahoo.com if you would like to discuss.

Thank you again, Dr. Medbury and Dr. Spunberg, for your dedication and counsel.

Best regards,

Francesco

candtlaw
Registered Member

Date Joined Mar 2007
Total Posts : 203

Posted 9/19/2007 5:13 PM (GMT -8)

So glad to read a positive post Francesco 🙂 Take care and check in when you can……..

Cyndi
post CK 04/30/07

fb
Registered Member

Date Joined Jul 2007
Total Posts : 20

Posted 7/16/2008 10:31 AM (GMT -8)

Well, I am now almost a year after Cyberknife and as promised, I have published a website recounting in some detail whole experience of being diagnosed, choosing a treatment in the face of conflicting medical opinions. and my progress since treatment at Cyberknife. I tried to recount the story in detail, hoping that my experience might provide some help and guidance for new patients diagnosed with this condition. I’ve also listed on the site a few key tips and resources for new patients. I hope it is helpful.

The site is at www.myacoustic.org

Thanks again to all for your assistance on my journey.

Francesco

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