Cyberknife Treatment

[Guitarmn50]

Hi,
This is my first posting here at the forums: from my doctor:

FINDINGS **:
Comparison: 10/08/2008

Technique: Multiplanar multisequence MR images of the brain and
IAC were obtained without and with 14 cc of intravenous
gadolinium.

There is interval enlargement of an enhancing left IAC mass. It
currently measures 2.3 cm transversely, 1.8 cm in the AP plane and
1.6 cm in the craniocaudad dimension. This was previously reported
as 2.0 x 1.8 x 1.3 cm (dimension orientations not listed nor
measured on images). This enhancing mass occupies all of the left
external auditory canal, expandes and extends into the left CP
angle where it is contiguous with and mildly compresses the
medulla.
The remainder of the exam is stable with no other interval
findings of significance.

** IMPRESSION **:
Enlarging left IAC/CP angle mass now mildly compressing the left
medulla as above.

I am 50 year old, male, reasonably healthy wight 150lbs
Can anyone give me a "semi-prognosis" as to what I'm looking at with this kind of treatment?

PS. I'm a transit driver and a sole caregiver for a parent...I'm also a musician

I have yet to confer with my doctor, but certainly any help here is greatly appreciated.

Note: I am starting to experience some mild tingling and numbness in my left cheek.

[Larry]

Howdy from down under.

You need to get the doc to explain it in english to you in particular where in relation to your facial nerve and more importantly your brain stem is the growth.

Going forward you have three options.

1. Watch and wait
2. Surgery
3. Radiation / radiotherapy treatment

1. - if you have no real current side effects, you may want to wait but I'd suggest MRI's every 6 months. Once it spikes then you may need to do something
2. 3 different options - Translab - Quacks have best view of AN but you lose all your hearing. Retrisgmoid and middle fossa - similar types - not such a good view of AN but less invasive and a chance of maintaining some level of hearing. All options require minimum 6 weeks recovery (assuming no complications)
3. Gammaknife - single dose - 1 session - usually no recovery time needed. Cyberknife - usually 5 or so treatments - maybe 40 minutes each - no recovery time needed.

Given your scenario (carer etc) I would opt to either do 1 or 3. I've been through all three. I had surgery first - not very successful on a number of counts Then it grew back so I watched until it grew back then had radiation treatment. Financially, "standing  down from work for 6 weeks was hard.

laz

[Guitarmn50]

Tghanks for the post!

Acually, I'm going to stage two the tumor has in fact doubled in size.  I'll check back here later have to return two work.

Many thanks for following up here!

[Jim Scott]

Hello and welcome, guitarman ~

I'm not a doctor and can't offer you a detailed explanation of the radiolgist's finding but I gather from the MRI report that you have an acoustic neuroma that is growing and will have to be addressed.

Your hearing may be adversely affected.  However, if your hearing is good now (in the affected ear) it may be 'saved' depending on how you choose to treat the tumor (which is almost always benign).  Your driving job may be impacted but, again, that will depend on your treatment and the ultimate results of that treatment.  Many AN patients return to their jobs following surgery or radiation.  As a caregiver, you will require some temporary help with your parent and you should consider how you'll handle that situation.  Being in good health is always a positive and I'm sure you'll get through this just fine.  We're here to offer advice and support as you work your way through this situation.  Please consider the forums as a resource and ask whatever you need to ask.  We have a lot of friendly, compassionate, knowledgable people here that are eager to share their expertise and help you in whatever way they can.  I'm among them. 

Jim

[Guitarmn50]

Howdy from down under.

You need to get the doc to explain it in english to you in particular where in relation to your facial nerve and more importantly your brain stem is the growth.

Going forward you have three options.

1. Watch and wait
2. Surgery
3. Radiation / radiotherapy treatment

1. - if you have no real current side effects, you may want to wait but I'd suggest MRI's every 6 months. Once it spikes then you may need to do something
2. 3 different options - Translab - Quacks have best view of AN but you lose all your hearing. Retrisgmoid and middle fossa - similar types - not such a good view of AN but less invasive and a chance of maintaining some level of hearing. All options require minimum 6 weeks recovery (assuming no complications)
3. Gammaknife - single dose - 1 session - usually no recovery time needed. Cyberknife - usually 5 or so treatments - maybe 40 minutes each - no recovery time needed.

Given your scenario (carer etc) I would opt to either do 1 or 3. I've been through all three. I had surgery first - not very successful on a number of counts Then it grew back so I watched until it grew back then had radiation treatment. Financially, "standing  down from work for 6 weeks was hard.

laz

Hi Larry,

Very helpful here! I just got home so I finally read your whole posting! OK my situation is this I do have tinnitus. In fact, I have had it since around 2001. I was playing guitar at the time and I always assumed that I had done something due to playing high trebles with my guitar amp. Unfortunately, for me, I put my faith in a certain otolaryngologist who misdiagnosed the tinnitus from the start. He had me take a simple Xray with a follow up hearing test! It never occurred to him that it might be AN! I was told that my hearing loss fell along the lines of people who have diminished frequency levels of hearing during the last 100 years!!! BTW this was Sutter Health of California for the record!! Now, I'm with Kaiser.

Since 01, the hearing loss really has not gotten aany worse; in fact, it seems more balanced now than it was just several years ago.  Though, I do understand that might be an illusion as to having adjusted to the effect and naturally compensated for it.

Well, I do feel much better after reading that bit about Cyberknife.

Regarding my job, the DMV does know about this because I disclosed to them my condition at my last DMV required physical, so they're having me come in once a year instead of every two years. 

My questions are these
After a Cyberknife treatment for a tumor of this magnitude is there a fair likelihood that I will keep my current level of hearing?

I appear to be experiencing some mild tingling in my face, so is there a probability that it will diminish after treatment.

I realize that these are generalities, but at least it help me formulate some kind of an idea what the probabilities are

Many thank for the help here Larry...

[Guitarmn50]

Hello and welcome, guitarman ~

I'm not a doctor and can't offer you a detailed explanation of the radiolgist's finding but I gather from the MRI report that you have an acoustic neuroma that is growing and will have to be addressed.

Your hearing may be adversely affected.  However, if your hearing is good now (in the affected ear) it may be 'saved' depending on how you choose to treat the tumor (which is almost always benign).  Your driving job may be impacted but, again, that will depend on your treatment and the ultimate results of that treatment.  Many AN patients return to their jobs following surgery or radiation.  As a caregiver, you will require some temporary help with your parent and you should consider how you'll handle that situation.  Being in good health is always a positive and I'm sure you'll get through this just fine.  We're here to offer advice and support as you work your way through this situation.  Please consider the forums as a resource and ask whatever you need to ask.  We have a lot of friendly, compassionate, knowledgable people here that are eager to share their expertise and help you in whatever way they can.  I'm among them. 

Jim

Thank you for helping me here Jim, and I believe you...I just started reading around the forum. So I see that it's not all doom and gloom! LOL!   Like I was saying to Larry: I think that I'll be OK with all of this if I can just keep the status quo; that is to say, not loose any more hearing in the affected ear than I already have. Hopefully this twitching on my face will diminish after treatment too..Thank you so much for helping me out here Jim.. I plan to cover a lot of base here at the forum this weekend..

[leapyrtwins]

Unfortunately, for me, I put my faith in a certain otolaryngologist who misdiagnosed the tinnitus from the start. He had me take a simple Xray with a follow up hearing test! It never occurred to him that it might be AN! I was told that my hearing loss fell along the lines of people who have diminished frequency levels of hearing during the last 100 years!!!

Guitar -

if it makes you feel any better, the are many AN patients who are misdiagnosed for years, so you aren't alone on this.

Radiation is usually good for saving your hearing.  Treatment will cause swelling, so it may actually make your hearing worse before it gets better though.

Jan

[Guitarmn50]

Thanks for mentioning that Jan. Well, I don't know maybe it's better that it's happening today rather than back then. I mean techniques are improved all the time these days right?

I think my biggest stumbling block will be these balance and facial issues issues--that I've only just started to read about. This is all brand new to me

[leapyrtwins]

Balance issues usually resolve themselves after treatment - your body learns to compensate.

I just realized you're in California.  Have you talked to Dr. Chang @ Stanford?

Jan

[ppearl214]

Hi Guitarmn and welcome.

I will speak from patient experience only.

I am almost 4 years post-CK for my 1cm AN.  Prior to my CK, I had over 90% of my serviceable hearing.  Today, almost 4 years later, I have maintained that hearing level (of over 90%).

Balance and tinnitus are issues with me, prior to CK and post CK.. however, I have other medical ailments that (the docs believe) are the key reasons for my balance issues.

I had my CK done over 5 doses/days.  By "fractionating" the treatment, the sense is that it helps with overall hearing preservation.

MaryBKAZ (a user on this site) had CK done in 1 dose due to extreme low hearing levels prior to treatment.  Many have it done over 3 days, etc. Each CK treatment team/facility will discuss their suggestions to you, based on a number of items, such as hearing level at time of treatment, location of the tumor, etc.

I suggest a good read at the CK Patient Support forum (www.cyberknife.com).  Radio-oncs that perform all kinds of radiation (including CK) donate their time to answer patient questions.  They are very familiar and supportive of the ANA Discussion forums and are very helpful, insightful and yes... they even show humor from time to time! (human... nice to see it in a doc!).

I will be having my 4 yr CK follow up this Feb (as well as my hearing test).  There are other forum users here, such as Mark (he is now 8 yrs post CK for his AN), MaryBKAZ, Sgerrard (a forum Moderator like myself) and many many others that have had the treatment successfully.

As with any medical treatment, outcomes are not guaranteed, risks involved but I am a firm believer of being the best, well-informed patient you can be so please take your time in doing your homework.  We, as patients on this site, can share our experiences and what knowledge we have with you... the docs on the CK patient forums can share professional inputs... and as Jan is noting...if you are in CA, Stanford is definately the place out there to have CK.

Wellness wishes to you.. and again, welcome.
Phyl

[Guitarmn50]

Balance issues usually resolve themselves after treatment - your body learns to compensate.

I just realized you're in California.  Have you talked to Dr. Chang @ Stanford?

Jan

Hi Jan, thank you for posting this info...I'm starting to feel a little more comfortable reading these postings here at the ANA!

That's interesting about Stanford because my pending doctor at Redwood City is Dr VictorTse who was an associate professor and Academic Chief of Neurosurgery! I was impressed!  and maybe a little more at ease, too!

The thing about all this is I have done a little research about The Gammaknife, and now there's Cyberknife. I understand Gamma is 1 treatment, and Cyber is spread out over 5 treatments. From what I understand, Cyberknife is more "friendly" to the existing hearing that still remains? I'm not sure what the specs are on my remaining left ear side...I think it's 60-70% remaining.

Thanks Jan

[Guitarmn50]

Hi Guitarmn and welcome.

I will speak from patient experience only.

I am almost 4 years post-CK for my 1cm AN.  Prior to my CK, I had over 90% of my serviceable hearing.  Today, almost 4 years later, I have maintained that hearing level (of over 90%).

Balance and tinnitus are issues with me, prior to CK and post CK.. however, I have other medical ailments that (the docs believe) are the key reasons for my balance issues.

I had my CK done over 5 doses/days.  By "fractionating" the treatment, the sense is that it helps with overall hearing preservation.

MaryBKAZ (a user on this site) had CK done in 1 dose due to extreme low hearing levels prior to treatment.  Many have it done over 3 days, etc. Each CK treatment team/facility will discuss their suggestions to you, based on a number of items, such as hearing level at time of treatment, location of the tumor, etc.

I suggest a good read at the CK Patient Support forum (www.cyberknife.com).  Radio-oncs that perform all kinds of radiation (including CK) donate their time to answer patient questions.  They are very familiar and supportive of the ANA Discussion forums and are very helpful, insightful and yes... they even show humor from time to time! (human... nice to see it in a doc!).

I will be having my 4 yr CK follow up this Feb (as well as my hearing test).  There are other forum users here, such as Mark (he is now 8 yrs post CK for his AN), MaryBKAZ, Sgerrard (a forum Moderator like myself) and many many others that have had the treatment successfully.

As with any medical treatment, outcomes are not guaranteed, risks involved but I am a firm believer of being the best, well-informed patient you can be so please take your time in doing your homework.  We, as patients on this site, can share our experiences and what knowledge we have with you... the docs on the CK patient forums can share professional inputs... and as Jan is noting...if you are in CA, Stanford is definately the place out there to have CK.

Wellness wishes to you.. and again, welcome.
Phyl

Thank you Phyl for sharing your story with me...OK it's very similiar to what I have except my hearing loss is definatly a bit more involving. Now, that I'm getting more into this, I'm only now starting to realize that there have been some balancing issues at work here. I tend to use my eyes quite a lot due to my occupation as a bus driver, so maybe that comes into play when I move around a lot. Fortunately, I haven't had any dizziness, but over the last few days I am starting to get a little tingling in my face and just today around my chin. It feels a mildly numb too. Oh I think my sleeping habits are starting to change in all of this...a little enervating to say the least!

I'll check out Cyberknife.com thanks for that. This is all so new to me, but reading you story and some others so far I can see that I'm just lucky I found this forum!

Thank you very much!

[Larry]

Guitarman,

sorry for long delay in responding. I can't tell you from personal experience about retaining hearing following radiation as mine was destroyed during surgery. From memory of this site, it appears that the odds of hearing preservation is better with radiation than with surgery.

cheers


Laz