post surgery cyberknife questions

[kelli]

Good afternoon everyone
I've been recovering slowly from my Dec 20 retro/posterior fossa surgery.  I am driving short distances and have started water aerobics and light weight training at the gym.  My balance is slowly improving.  I am still having a very hard time with sound after losing all of my hearing in my left ear after surgery.  This AN experience has been difficult.  Today, I just saw my ENT for a followup and she showed me the post surgery MRI.  It looks like a crescent moon and she showed me that the residual tumor is wrapped around my facial and other cranial nerves.  She also said that cyberknife can damage all of these nerves just like surgery.  I made it through surgery and am recovering and getting used to the new me. I am now worried about cyberknife causing brain and nerve damage.  I am scheduled for April and the doctors say that I need to get it done now and get all of the treatments finished.  I am so frusterated and in tears today because I have had it with this thing!  I am trying to stay positive but it is hard some days. I want to feel good again!  Can someone share their surgery and cyberknife experience with me so that I can know what to expect?
Thank you so much,
Hugs to all,
kelli

[ppearl214]

hi kelli,

to me, I would suggest posing this question to the docs on the CK Patient Support board as they may have personally dealt with this kind of situation and would know how they do what they can to prevent nerve damage (since the beam is highly targeted). 

www.cyberknifesupport.org/forum

Phyl

[Mark]

Kelli,

I'm assuming that the ENT you met with is with Kaiser as opposed to Stanford which would explain the (deep breath, be mellow Mark) silly comment she made about CK and nerve damage. Silly is not the word I wanted to use but the deep breath thing helps before I type sometimes  . having been in the Kaiser system for a number of years I can say with some degree of experience that they have some very talented clinicians at the specialty level, but at the GP / ENT level it is a real box of chocolates in terms of quality. Also, keep in mind that Kaiser in Northern CA has no radiosurgery capability which is why they contract with Stanford for it. So most of their ENT's are pretty un/ misinformed on the subject.

The whole point of the surgical debulk / zap the residual approach is designed to improve the patients probable quality of life outcome since the results of facial palsy and hearing loss on full surgical removal of large AN's is pretty high compared to removing the bulk and radiating the remainder. In short, there is a wide gap between "can" and 'will". "Can" radiation damage facial nerve or hearing function, sure , but it is a pretty small %. The ENT could also say you "can" die during AN surgery but that % is amount as small as damaging the facial nerve with radiation. Of the two nerves involved, the facial is the more resistant to radiation damage and facial nerve function preservation for all CK treatments is in excess of 99%. Surgical removal of a 3 cm AN would have put your facial nerve damage risk closer to 15-30% depending on approach and surgeon ability. Hearing nerves with their thousands of little hair follicles are more sensitive to radiation and even with fractions there is some risk. If Dr. Nutick had been more successful in saving your hearing during the surgery, then you still would have had some risk of losing it during CK, but a 70-75% chance of maintaining what hearing you had. A straight surgical removal would have at 0% probability of saving hearing at that size in the best surgeon's hands.

In my view, you made an excellent treatment choice to give yourself the best odds of maximizing your outcome. Hearing is the harder to save of the two functions, but I also think there is no one on this forum that would put a higher priority on that vs. keeping the facial nerve function. The CK treatment will create very minimal risk in that area. It is a shame that the ENT who you spoke with was apparently ignorant of the risks and probabilities involved and unable to reassure you that the next step was the less riskier of the two.

BTW, I'm glad that you felt with comfortable Dr. Nutick. I didn't connect with him at all and found him a cold fish who didn't make me feel he cared about my outcome at all. maybe I caught him on a bad day or he grew a personality since I met him 

Good luck

Mark

[sgerrard]

Hi Kelli,

Tell the doctors to stuff it; you will have CK when you are good and ready. 

Okay, maybe just pretend to tell them, although there really should be no rush. I agree with Mark; you are past the toughest part of the treatment. Having done CK myself, and just gotten my first follow up MRI, I will guess that you have an excellent chance of doing CK with no further damage or symptoms. Guaranteed? No, but the most likely outcome, yes. Jim Scott, a hero member on this forum, had surgery followed by radiation, with excellent results. You can too.

The single side deafness, or SSD, will be an adjustment for you. Maybe you can look into a BAHA a little later; those who get them seem to like them. I am intrigued by them myself, mostly because of the amusing methods used to keep the post clean. I  think they do help with hearing better, though. I have partial hearing loss, and am now going to look at getting a hearing aid for the left ear. Not cheap, but I think it will help.

By the way, thanks for dropping back in on the forum. It is good to hear that overall, you came through in pretty good shape. A year from now, it will be all be  history, something to look back on with fond memories. 

Best wishes,

Steve

[tdworkin]

Kelli,
I was brought up to respect and not question my elders and all authority figures. This includes teachers, police, clergy, and doctors. It took years of experience- not all good!!- to learn THAT is not always the best practice. Like everybody else in this world...  a) they are not always right b) they do not always have the answer and 3) they don't walk on water. It took some time before I could say I deserved to give myself more (like actually question THIS or THAT person) and get another opinion. Thank goodness I did that with my AN or I would have listened to the first dr. I saw. No, I actually went to 4.
Check out the resources available about how imperative it really is to get the follow up CK by April and challenge that ENT's level of expertise. There are drs.  (like Chang at Stanford and others)  available on the CK website already mentioned who will answer your questions with a high degree of qualifiied ( I mean real ) experience. I would ask those who can give the best informed answers. Good searching and Good health, too.
T

[pearchica]

Kelli: hope all is better with you. I have had no problems during CK treatment or post CK.  I thought CK was the best treatment I ever had- sure beats the yearly physical exam.  I had no side effects and continued with life normally.

I'm sorry that you are experiencing all this.  It's scary.  Please know that you and all the ANer's are in my thoughts and prayers.

Take care, Annie

[goinbatty]

Hi Kelli,
Sorry to hear you've had such a rough time.  As far as when to have CK, my only advice would be to consult with several physicians, listen to what they have to say, and then decide for yourself when to have CK.  Try not to let yourself be pushed into this before you're ready.  I recently had CK and all is fairly well so far.  I can understand your concern with what all you've been through already.  Keep us updated. 
Sandra

[okiesandy]

Follow Phyl's advice and ask the doctors on the Cyberknife Support forum. From experience I know they will answer your questions truthfully. I had some facial numbness before CK because the tumor was very near the trigiminal nerve. I was not offered a money back guaranty if the CK damaged the facial nerve. I was told there was that possibility and it was very rare. However, 3 months post CK all was well. No damage and numbness went away.

I am constantly amazed at the down right scary answers the doctors give us. I had one joker ask me why I was afraid of the surgery. When I said I didn't want disability, disfigurement or death at this time, he said "Well ,you have lived a good life haven't you?" A pox on him.

Medbery may be a joker on the support forum but, he is all business when it comes to treatment. He might ask for your MRIs and then he will present them at a board meeting to several kinds of doctors, a couple being neurosurgeons. If they think you will be caused damage, they will tell you. You came through the worst and light at the end of the tunnel is the sunshine not a train.

[Jim Scott]

Hi, Kelli:

I regret discovering this thread kind of late but I hope my comments can still be useful to you, even now.

I'm truly sorry for all the stress you're experiencing over having radiation.  Apparently, some doctors are uninformed on this subject and pass misinformation onto already-anxious patients, making matters more difficult.  This is unfortunate, but at least you came here for some clarification.  Although I'm not a doctor I can still offer you some practical information. 

At age 63, I underwent retrosigmoid surgery to de-bulk a large (4.5 cm) AN.  Prior to the surgery, my neurosurgeon, an extremely knowledgeable and experienced physician who has been operating on AN's for over 30 years, had strongly recommended allowing him to reduce the AN, cutting off it's blood supply and rendering it small enough to be amenable to radiation.  This was done to spare the facial nerves.  Nerve monitoring was employed during the surgery.  The surgery went very well (9 hours).  I had no facial neuropathy or collateral nerve damage.  Three months later, after giving me time to recuperate (which I did) I underwent 26 FSR treatments, very carefully plotted by an experienced radiation oncologist and my esteemed neurosurgeon.  The FSR sessions were relatively uneventful, each one lasting about 20-25 minutes.  I had no ill effects from the low-dose radiation.  I experienced some tumor swelling post-radiation that lasted approximately six months and was slightly uncomfortable.  Ibuprofen (OTC) was able to alleviate the discomfort.  Within 6 months the AN began shrinking and necrosis was evident on the MRI scan.  That has continued.  My next MRI is scheduled for late June and I expect to see further shrinkage and necrosis.  Neither my neurosurgeon or the radiation oncologist, both very experienced doctors, ever mentioned any dangers in my having radiation treatments. 

I suppose there is always the remote possibility that a patient may need some form of radiation in the future (cancer) and if one has already had large doses of radiation in the past, this could be problematic, as the human body can only absorb a limited amount of radiation in a lifetime without endangering life and health.  A federal advisory committee recommends that lifetime radiation exposure be limited to a person's age multiplied by 1,000 millirems (example: for a 50-year-old person, 50,000 millirems).  That's quite a bit.  FSR is administered from various angles (you're strapped down on a rotating table) with the goal being to hit the AN from every possible angle.  Great care is taken to avoid the radiation beam hitting any surrounding tissue or nerves.  I had no problems with it. 

Here's a link to the Johns Hopkins website that offers a detailed explanation of FSR and might be helpful to you.

http://www.radonc.jhmi.edu/radiosurgery/treatmentoptions/stereotacticradiosurgery.html

I trust my comments and the link help answer some of your questions. 

Jim

[kelli]

Thank you all so much for your thoughtful and informative replies.  I have read all of the posts very carefully and have given alot of thought to what everyone has said.  Thank you all!  I went ahead with cyberknife this week.  I was fitted with my mask, had MRIs and CT scans on Monday.  I was then scheduled to have ck Wednesday, Thursday and Friday.  After my first treatment, the dr came in and said I was done after one treatment.  Is this normal?  I thought it was easier on the body to have the dosage split up into 3 days rather than single dose.  I didn't get a clear answer from him as to why he gave me the full dose and told me after the treatment.  He only said that because I had lost hearing on the left side he gave me single treatment.  I am very confused.  Has anyone else had a single dose of cyberknife?  Are the side effects the same as splitting up the dose?  I am concerned and wonder why he changed the treatment plan and told me later.
Is there anything I need to watch out for?
Thank you,
Kelli

[ppearl214]

Hey kelli, saw your post on the CK Patient Support board... sent you huggles there.... and here as well. Hoping the dr's there (Dr. Chang does check in over there as well) can answer for you.

Phyl

[Mark]

Kelli,

It is not uncommon to have a one dose CK treatment plan if there is no advantage to doing the fractions. The primary reason for doing the fractions would be to reduce impact on the hearing nerve and increase the hearing preservation probability. Given you had no usable hearing as a result of the surgery, I can understand having the one shot protocol. What I'm perplexed and confused by is the communication disconnect between you having the impression that it was a 3 day treatment plan and showing up and being told it was being done in one. That is very "un Stanford like" in my experience.

Mark

[ppearl214]

Hey kelli,

not sure if you saw but Dr. Medbery just responded to your post on the CK Patient Support board.... and it falls in line with what Mark shares here..... pls hang in there.

Phyl

[marystro]

Hi Kelli,

Sorry about chiming in so late.  Having tears and worries are normal.  I was a basket case for a few days until I found all the good folks here on this board and CK.  Some surgery doctors mentioned similar issues about radiation but IMHO they are biased.  I finally made up my decision when I met a local surgeon who recommended CK and Dr Chang who performs both surgery and radiation.  They along with others' input here confirmed my decision.

If you have any doubts or questions, you should contact your doctor and get clarification.  It sounded like you had CK at Stanford.  I found my Stanford team very responsive.  They are so understanding about our anxiety and are very good in responding (email, phone call).  Sometimes it takes them a few days since they are so busy treating patients.  Most time I get reply within 24 hours.  I am quite sure they will help with your question.

I did have some issues with my trigeminal nerve but they are all subsiding.  And the issues are not caused by CK.  It's just that the AN is too close to that nerve and it did not like being its neighbor.

Hope all is well with you.  With the support group here, CK board doctors and Stanford, you are in great hands.

Mary

[kelli]

Thank you so much for all of your replies.  I appreciate the support and information so much.  I am feeling pretty good following my single dose CK.  I've been pretty tired, but actually made it to the gym yesterday and today.  I'm feeling like I really want my life to get back to normal quickly.  This AN has taken so much time and energy.  I'm happy to be done with the surgery and the CK.  I'm also happy to read that many of you have had no side effects from the radiation.  I pray that I am in that group.  It's only been a week, but so far so good.  Is there anything I should watch out for post CK?  I'm still having headaches from the surgery, so I'm not sure that they are the same or are new symptoms.  Dr. Adler said I could get back to my normal activities immediately.  I have decadron in case of emergency following my surgery, but was only given one pill after treatment.  I guess I will just wait and see and pray for the best.  Thank you all so much!
Hugs,
kelli