Now, even more confused ... and in tears....

[sally]

Phyllis,
Happy Birthday and Valentines Day!  I've been following your discussion and wish you well and peace of mind in your decision making.  I live in the Burlington, Vt area and have been referred to Albany Medical Center in NY for a 2nd opinion/consult for my AN.  No one is really giving me much info on the exact size and location, but my PCP has been the most helpful.  I've been doing reading and researching on the web and I'm leaning more towards CK treatment for my "small" AN that is located in my right ear internal auditory canal and cochlea.  The thought of brain surgery scares me to death.  I'm most interested in preserving what hearing I have left.  The doctor I am going to see is Dr. Steven Parnes.  My appt is in 2 weeks which will be 5 months since diagnosis.  I'll be sure to give you feedback on my appt.  Albany isn't that far from you.  I wanted to go to MEEI, but my insurance co. said no because they were not" in network."  I just don't know if I could fly to CA for brain surgery.  Suppose there was a complication or question?  Does the doctor there have an 800 tel.#?  I think my husband would say I was crazy to even think of doing that.  How have other people dealt with the long distance thing?
sally

[okiesandy]

Pearl,

I would never try to lead you to a decision. That is a personal thing that you will know when you have made the right one.  It will wash over you with the most peace you have known in a long time. I was scheduled to have surgrey with Dr. Brackman Nov. 8th. Talked to him many times on the phone. I was turned down by insurance and then had to reschedule. HEI made me a cash deal that we could swing. However, in the mean time I went on the Cyberknife Patient Support site and started talking to the doctors there. The answered every bit as quickly as Dr.B.  I had a conusult with one of them and then was sent to the neuro-surgeon who does surgery and CK and GK. It was her opinion that I was a candidate for any thing at that point. She had moved here from the West Coast and was very familiar with a lot of AN's.

My deciding factor was when I ask her what she would do or what she would suggest for a dear member of her family. She said go with what you feel in you gut. Research and get through all of the rumors and do the research that was published in the last few years. Not over 5 years old. she told me forget about radiation causing cancer, failure is only about 1-2 percent different than surgery. Go to more than one doctor that does both. A surgeon is going to say surgery and a radiation doctor is going to say radiation (not so in my case he said this is how the stastics come out and you will make the decision, just be armed with the facts).  The neurosurgeon did say she is doing less and less surgery on the AN's and so are the other doctors in her office. She said if she had a AN in an area was easy for radiation to do its job, that is what she would do. If I had of had hearing then I would have a better chance of retaining hearing with CK.

After talking to Dr. Brackmann again and him telling me I would be making a mistake. I knew the neruosurgeon was right. Go to someone else that had experience in both. The second neurosurgeon said he did not see why anyone would go with surgery before they tried radiation. The failure is small and there is little chance it would mutate. Even the old "I just want it out of my head" line was not the end all and be all. CK is just as accurate as surgeons knife. I took another month and finally decided to try CK.

So far so good. Lost a tiny bit of har. A couple of tiny little uncomfortable twinges. No pain. I am not far enough into this to know what the outcome is going to be. I have every reason to think it will work. I feel good, am working 10 hours a day and balance is getting better.

I thought I had found peace when I scheduled surgery. I think I was just resigned. When I changed and went with CK I went to sleep and slept like I hadn't in months. Got over the fear that had kept me paralized for months and started planning my life. I have AIED and Cochlear Hydrops in my good ear that threatens to take my only hearing ear at any time and I could not deal with so many things going on at once.

Youe will find your peace if you go to a doctor that does both and let them help you with your decision and you will feel a weight lifed by knowing you have done your best.

Sandy

[dgrummer]

I can’t agree with Sandy more. 

We consulted with 4 Neurosurgeons and 1 ENT for my husbands AN – two of which performed both (one GK and one CK).   Two of the doctors who did not practice radiation both advised that we get an opinion from someone more knowledgeable about it.  The two doctors that did both advised against radiation because of the size and location – so obviously it made our decision for surgery much easier.  His surgery is next Thursday.

We prayed for insight on making the right decision and it was made obvious to us – I pray the same for you and that you feel the peace and calmness with whatever you decide.

[ppearl214]

Hi all.. figured I'd check in and thank you all for the thoughts... (Sally, thanks for the wishes as well... bday was rather quiet).

Headaches are getting worse and in tears most of this week. Did speak to my Primary tonight and asked for her thoughts on what she would do if she were me.  She really tried to look at it from a common sense standpoint and gut reaction... her thoughts were radiosurgery first, and if it doesn't work, then go to surgery (her thoughts... start less invasive then graduate to invasive if need be).  Her first concerns were preservation of hearing and facial nerve... shared with her what Dr. Brackmann told me.  Told her I have appt with my local brain surgeon next week (the one she referred me).  So, still no "gut" feeling at this time, but....

Sandy, you make a very valid point and I thank you for sharing this with me/us.  As of today, I remained confused, have finally stopped crying (I think they make my headaches worse) and am off for a long holiday weekend so I can sit back, get hold of Beth Israel re: their CyberKnife and meet with my surgeon next week. Hope to have a decision by then. My primary agreed that the time has come for a decision, so weighing out all options.

So, that's my update. Hoping you all enjoyed Valentines and are doing well today... and as usual, how do I try to say thank you to you all?  I  have no clue... but.. just to say thank you.

Be well all... will keep you posted.

Phyl

[flagger]

You will be alright!  My An was radiated in fall of 2000 and I am great.  I only experience a little trouble hearing in restaurants where it is noisy(need to turn my head with good ear to the speaker).  My tumor was 2.1 CC and it has shrunk more every time I get an MRI which now need not be until 2007.  The worst time was making the decision.  Those docs that want to surgically remove are so convincing.  The radiation treatments that I received were daily for 28 days and that was it.  The only short term side effect was headaches which stopped after 6 months. I still have 40% of my hearing in that ear and NO other side effects.  I just got back to life.  I wish you luck with your decision.  Do not throw out the radiation choice too hastily.  I think like me so many of us who have chosen that method move on and are not here to post.  I am sorry I have not come back to give encouragement to you and others who need it before now.  I am just fine and you will be also!  K

[ppearl214]

K,

Thank you.  Your words of encouragement are so appreciated.  I'm thrilled to hear that you have been doing very well and the procedure you did looks to be successful. 

I guess my question re: radiosurgery is..... if Dr. Brackmann at House Clinic is telling me that he feels my hearing (which is bottom of the "normal" range) would remain (give or take by 10% of what it is now) and my facial nerve (having more frequent facial numbness the past few weeks) would be ok... then if I have the radiosurgery done (looking at CyberKnife locally), are the risks greater that my hearing would become more affected as well as my facial nerve vs. having the surgery done?

I've placed a call to Beth Israel/Deaconess about 1/2 hr ago and waiting for the call back now. I know they can better answer this but curious how this weighed into your decision (or anyone that has had the radiosurgery done)?

Feeling like it crunch time now. I'm not looking to make a hasty decision... but really trying to arm myself with as much educated/professional data as I can.  As my dad said to me last night... this is one of the most difficult decisions in life I would have to make. Ain't that the truth....

Best wishes to you all today...

Phyllis

[Larry]

Phyl,

be careful of stats. I had Middle fossa and lost a lot of my hearing. I was told that I'd lose about 25% of my hearing which i have but that is tested via machine and noise. The crunch is conversation in a normal environment not in a sound proof box. From the posts I have read radiosurgery seems to provide much better results re hearing.

Larry

[ppearl214]

Larry, thank you!  Very important info as this is what I've been trying to find out... you are priceless! Thank you!

Phyl

Phyl,

be careful of stats. I had Middle fossa and lost a lot of my hearing. I was told that I'd lose about 25% of my hearing which i have but that is tested via machine and noise. The crunch is conversation in a normal environment not in a sound proof box. From the posts I have read radiosurgery seems to provide much better results re hearing.

Larry

[targa72e]

Hi Pearl,

I think that when you crunch all the numbers that the statistical information on hearing and facial nerve preservation on small tumors the numbers are about the same.  In the end I think you have to pick what you are most comfortable with


From the house web site
Middle Cranial Fossa Approach
Preserving anatomical continuity of the nerve means that the nerve is intact and was not disrupted by the surgical procedure. Even with an intact nerve, the functional abilities of the nerve may not be complete. However, results from our series over the years have shown excellent results in terms of functional outcome of the facial nerve. In a recently reviewed series of over three hundred and eighty (380) patients who underwent a middle fossa-type approach at the House Clinic, ninety-five percent (95%) of these patients maintained excellent facial nerve function after surgery. Only five percent (5%) suffered minor weakness of the facial nerve function. Preservation of facial nerve function is dependent to some degree on the size of the tumor that is removed.
Hearing preservation is the major reason we use this approach in appropriately selected patients. Our hearing preservation rates described in five series from 1989 to the present demonstrate preservation of hearing to within 15 dB speech reception threshold (SRT) and 15% word recognition score (WRS) in between 59% and 71% of operated patients.(5-8) Our most recent published series demonstrated 60% Class A or B hearing according to the reporting guidelines of the American Academy of Otolaryngology-Head and Neck Surgery and we have seen the same success in the management of NF2.(5,9) These results compare favorably with those of recently reported gamma knife immediate post-treatment hearing preservation results.
The middle cranial fossa approach provides an unobstructed view of the entire IAC and its contents. This allows complete tumor removal under direct vision. In a review of 500 cases with several years of follow-up, we identified only one case of residual tumor (0.2%).

From Pub Med on gamma knife
Hearing preservation after gamma knife stereotactic radiosurgery of vestibular schwannoma.

BACKGROUND: To evaluate the hearing preservation rate and to determine its prognostic factors after gamma knife (GK) stereotactic radiosurgery (SRS) in patients with vestibular schwannoma, the authors used a prospective study design to analyze these patients. METHODS: Between December 1997 and January 2002, 25 patients with vestibular schwannoma with serviceable hearing were enrolled in the current study. The median tumor volume was 3.0 cc (0.16-9.1 cc). The prescription dose was 12.0 +/- 0.7 gray at an isodose line of 49.8 +/- 1.1%. The tumor control rate and complications were evaluated by focusing on hearing preservation and its prognostic factors. RESULTS: Based on radiologic study, the tumor control rate was 92% during the median follow-up period of 45 months. The trigeminal and facial nerve preservation rates were 95% and 100%, respectively. Thirteen (52%) of the 25 patients preserved serviceable hearing and 9 (36%) patients retained their pre-GK G-R grade levels after GK SRS. However, 16 patients showed hearing deterioration > 20 dB within 3-6 months and this trend continued for 24 months after the treatment. The maximum radiotherapy dose delivered to the cochlear nucleus was the single, significant prognostic factor of hearing deterioration. CONCLUSIONS: The authors concluded that a more sophisticated strategy to prevent hearing deterioration during the first 6 months post-GK SRS is necessary to improve long-term hearing preservation.


John

5mmx5mm waiting and watching

[Mark]

Phyllis,

I'm not sure what facility published the GK study John is referring to but there are a number of other more recent studies with consistently higher numbers for hearing and facial nerve preservation with radiosurgery . I have posted several of them which can be found in the archives of this forum. The study quoted here is limited to the "one shot dose" protocol which historically has results similar to surgery on small AN's and better on meduim to large AN's. The emerging data on FSR protocols on machines such as CK and Novalis is displaying 99% facial nerve function preservation and much higher hearing preservation in the 75% range from pre treatment levels. So I think it is important to segment the protocols when looking at radiosurgery outcomes.

As far as the HEI results on middle fossa approach, I certainly can't refute their quoted results although they are much higher than  those I've seen published elsewhere , but I would be curious as to how much peer review went into their method of study.

I would agree with John that , in general , outcomes  for radiation and surgery in the hands of a skilled AN surgeon such as HEI for small AN's ( < 1 cm) are probably comparable. Surgery results worsen as the size increases whereas radiosurgery results tend to be independent of size.  I'm not sure where the delta is for sure but I generally believe those with medium AN's and few deficits pre-treatment will have better results with radiosurgery than surgery.

Mark

[ppearl214]

Thank you John and Mark so very much for the stats and inputs on both the microsurgery and GK/CK/Novalis.  For me, I think that knowing upfront that all treatments will run the risk of unpleasant outcomes, especially for a "classic AN" such as mine is soemthing I have to keep in mind and at this stage, I think that regardless of what treatment plan I decide, I know that the risks involved are there and maybe just have to mentally gear myself up for "what happens, happens". My hope, based on the films and reports, is that the hearing and facial nerve will be slightly (if at all) affected and now I'm prepared mentally to deal with it... for me, it's now deciding... do I go invasive or non-invasive? Recovery times?  Treatment locations? Etc..... For me, these are the factors I now have to figure out.

You all rawk... I constantly tell you but boy, do I mean it!  Thank you!

[ppearl214]

UPDATE INFO:

Well, here goes!

Met with brain/neurosurgeon (Dr. Eliz Claus at Brigham and Women's) today (they moved up my appt to today vs. this Friday... schedule conflicts). Well, I had myself a shocker!  She doesn't see me having surgery but radiosurgery!   :o  I nearly fell out of my chair! A surgeon that does not recommend surgery but radiation!  Oh, my!  She also reviewed my base line hearing test results and felt that since I'm in the bottom range of "normal", although experiencing some tinnitus and some ear "sensitivities", I would be fine.

Well, it turns out that the following is confirmed for the Boston area (she has BIG experience in Gamma Knife since she also worked it in her internship at Yale Medical).

Gamma Knife performed at Tufts University and in RI.
Cyberknife performed at Beth Israel
Proton performed at Mass General (she knows Dr. Martuza well and spoke VERY highly of him!)
Novalis, done at Brigham/Women's where she is. She also noted a "new machine" just in at B&W, but unsure what kind.

So, she feels that at this stage, doing radiation and my chances for preservation of hearing and facial were VERY good (less than 5% chance, although, risks are not to be ignored).

We discussed CyberKnife vs. Gammaknife.   We discussed how CK is more comfortable on the patient vs. GK (she's put in MANY head frames and discussed the discomfort with me of headrames.. and I shared with her about the "masks" used in CK.. who says you can't inform your doctor of YOUR research!?!?!?).  Her attitude was 1 dose vs. FSR (granted more patient comfort) is what needed to be evaluated by me.

She knew of the Proton treatment but not as versed. She says Martuza is the man and truly knows his stuff!

We agreed that the Novalis was eh-eh (she even admitted it!) and we needed to find out what the new machine is at B&W

Her concerns are ... since the AN is in my left IAC (but now extending beyond into the CP Angle region), the AN and nerve would have a chance to experience the swelling that goes with radiosurgery.  She feels that I could have it done anytime within the next 6 mos, based on it's current size.  (Can you all say "YAY! Phyl gets to now go to France with her Brit boyfriend and his family in May??? )  She feels the risks of microsurgery would definately cause more harm than good for me and is exceptionally supportive in a decision/choice of radiation.  She believes, for me, going  non-invasive vs. invasive would be very helpful, beneficial and final outcome would be good.  I have to say... how much more honest can one be???  I luff her!

So, next step.

1.  MRI CD sent to Beth Israel Cyberknife team for review, then we set up consult.
2.  B&W Radio Oncology is setting me up for consult (need to find out their "new machine")
3.  Check more into Proton since I don't know enough about it.
4. Check into GK at Tufts University (since they are only 10-15 min from my house).
5.  Check in with family to give them update
6.  Decide what to do and timeframe and then.....

7.  Book plane tix to England to see my boyfriend, then continue onto France with his family for " wine country holiday"

I'm not 100% decided on Radiosurgery or to maintain wait/hold (as she eluded to today) but will continue further research into it so I can help narrow down options.

So, that's it... hoping you all are hanging in there... and you know, as always, I send you hugs and can't thank you all enough for your continued support (email/phone/posts).  You all truly do rock!

Phyllis

P.S. guess what? Another fly in the oinment.. they found a Choroidal (is that how you spell it?) Cyst smack dab in the middle of my brain!  Looks real neat on MRI film... NOT, but she said not to worry about it now....

[Larry]

Phyl,

Great post - very informative. Enjoy your trip and then a blast of radiation and you'll be apples.

cheers

Larry

[ppearl214]

Thanks Larry. I'm in communications now with Beth Israel and waiting to hear about my consult appt. Also waiting to hear from Radio-Oncology at Brigham/Woman's for my consult appt there.

Have done some research on Proton at Mass General (http://www.mgh.harvard.edu/cancer/about/providers/radiation/proton/faq.asp) and not sure if it's the way to go for my particular situation.  Next step, researching GK at Tufts University (http://www.bostongammaknifecenter.org/).

My boyfriend (Gawd luv him!) is also doing some research (well, heck, since that is what he does for a living/pasttime, why not put him to good use from across the pond, ya know?) about the treatments as well.  Looks like I may have treatment before my trip to France.

I told my bosses yesterday to give them the update. Their concerns are "recovery time" and, down the road, as my "outcomes" begin to occur.  I tried to reassure them that if I do radio-surgery (I explained the difference between radio-therapy and radio-surgery) that there is not "recovery time" but there may be outcomes to look out for a few months after radio-surgery. They want a note from the doctor stating that I will be able to work. I have a feeling that work will become an issue with them, regardless of how much I try to reassure them. I do have a high profile job and a lot of interaction with Sr. Management as well as customers (my customers are based in Europe and Middle East)..... getting mixed signals at work now. They also want to make sure that if I have "outcomes" (ie: balance issues, hearing issues, etc) that the others in my office are not "affected" by what is going on with me.... *shakes head*.... this is going to be quite interesting.

Will keep you all posted as developments occur.. and wishing you all a terrific weekend!

Phyllis

[Kathleen_Mc]

Phyllis: They want a note that your co-workers won't be effected by what is going on with you? Like do they think you'll be given off radiation or something? Tell them to plug you in and maybe they'll save on the electric bill.....idiots! Kathleen