Author Topic: Gamma Knife vs Cyber Knife  (Read 13077 times)

deboline

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Gamma Knife vs Cyber Knife
« on: July 26, 2011, 02:50:15 pm »
I am looking for help from anyone that has had a similar experience. I had a 2.5cm AN surgically removed in 2004.  I now am facing a regrowth,  1.6cm and have the options of another surgery, Gamma Knife or Cyber Knife. The original reason a small piece of the tumor was left was because of it being entangled in the facial nerve. I did suffer facial nerve trauma and still have weakness in the left side, a crooked smile and dry eye.  My original neurosurgeon has refused to do surgery because of the chance of permanent damage to the facial nerve and has recommended the Gamma Knife - stating that this is the best way to get to the tumor from all angels with radiation. This is at the Univ of MD - they do not have the CK available as an option.  I solicited a second opinion at John Hopkins today and surgery was not ruled out - this being the best option to prevent regrowth, however, the Cyber Knife was also given as an option and the best option to protect further facial nerve injury. The doctor however would not rule out having to address this issue again after ten or more years with the Cyber Knife.
I am very confused as well as anxious. 
I am a 42 year old female.
Any opinions out there????

Jim Scott

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Re: Gamma Knife vs Cyber Knife
« Reply #1 on: July 26, 2011, 03:06:41 pm »
Debbi ~

Although this is really a question for medical professionals familiar with your case, my proletarian opinion (I'm just a patient, definitely not a doctor) would be to seek further consultations with doctors that perform both surgery and/or radiation to get a broader view of your viable options.  Although radiation is often used to address AN regrowth after surgery, another surgery may not be out of the question, although if facial nerve damage is likely, that wouldn't be an attractive option.  Because this is a complicated issue, you can see why we refer these kinds of questions to the medical professionals.   I hope you can find the answers you're looking for, soon.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

PaulW

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Re: Gamma Knife vs Cyber Knife
« Reply #2 on: July 27, 2011, 09:15:20 am »
I believe both machines are very accurate and the end results are very similar.
There are some papers indicating that Cyberknife may have an edge over gammaknife in the area of hearing preservation.
If hearing preservation is not an issue then it probably matters little which machine is used.
Cyberknife does not use a head frame and is therefore more comfortable to use.

If you want a professional opinion go to the Cyberknife forum where doctors will give you a professional, and normally well balanced opinion.

http://www.cyberknife.com/Forum.aspx?g=topics&f=2572

I am not a doctor and have provided this information in good faith and is my personal opinion only.
You should always check with your medical professionals.
10x5x5mm AN
Sudden Partial hearing loss 5/28/10
Diagnosed 7/4/10
CK 7/27/10
2/21/11 Swelling 13x6x7mm
10/16/11 Hearing returned, balance improved. Feel totally back to normal most days
3/1/12 Sudden Hearing loss, steroids, hearing back.
9/16/13 Life is just like before my AN. ALL Good!

deboline

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Re: Gamma Knife vs Cyber Knife
« Reply #3 on: July 27, 2011, 12:34:17 pm »
Thank you both Jim and Paul, this is exactly what I am looking for - information to make sure I have considered all points before I make my decision.  I truly appreciate the input!

ppearl214

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Re: Gamma Knife vs Cyber Knife
« Reply #4 on: July 28, 2011, 04:33:30 am »
Deb

Concur with both comments noted here.  Seek further info and opinions. There should be no reason to rule out either radiation options.  Paul is correct in noting that current data shows that CK has a slight edge in total accuracy over GK but both are exceptional, viable treatment options, even for regrowths.

Good luck with the homework and hang tough!
Phyl
"Gentlemen, I wash my hands of this weirdness", Capt Jack Sparrow - Davy Jones Locker, "Pirates of the Carribbean - At World's End"

deboline

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Re: Gamma Knife vs Cyber Knife
« Reply #5 on: July 28, 2011, 06:35:18 am »
During my original surgery, the hearing nerve was severed, so hearing preservation is not a concern. I do have facial nerve weakness (2-3) and that is a concern for me with the gamma knife or another surgery.  However, I would like to go with the most effective treatment for success and not to face regrowth again. I am having a hard time deciding between the gk or ck. I feel that I have ruled another surgery out at this time and would be willing to consider surgery as a last result even if that is in the future and there is scar tissue from the radiation to deal with. I had a lot of nerve damage during the original surgery and have suffered for 7 years with the post op headaches. Also dry eye and a phantom taste. So as you can see, I am very nervous about another treatment.
Debbie

Tumbleweed

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Re: Gamma Knife vs Cyber Knife
« Reply #6 on: August 03, 2011, 12:48:10 pm »
Debbie, I would get several opinions from AN specialists before making your decision. Dr. Steven Chang (from Stanford University Medical Center) is arguably the most experienced CK specialist in the U.S. and perhaps the world. He will review your MRIs and medical history and give you his recommendation for free. His email address is sdchang@standford.edu.

If it were me, I would choose the least invasive procedure possible, seeing as you already have a traumatized facial nerve. CK and GK are roughly the same as far as accuracy goes and -- as far as the facial nerve goes -- are both non-invasive. (GK does require screwing a crown superficially into the skull, whereas CK does not, but this has no effect on the facial nerve.) The fractionation (splitting up into several doses applied on different dates) that CK employs does give it a slightly better chance of preserving the function of the hearing nerve. I would ask Dr. Chang if the same holds true for a facial nerve that has already been degraded. Normally, the preservation of facial nerve function is not differentiated with CK and GK (as it is with the hearing nerve) because the facial nerve is considered to robustly withstand either type of radiation treatment. But for an already-damaged facial nerve, I suspect that fractionated radiation treatments (CK) could possibly be gentler on your weakened facial nerve. The usual caveats apply: I am not a doctor and this is a personal choice only you can and should make. But I highly recommend you ask Dr. Chang whether he thinks a fractionated approach (CK) would likely better preserve your remaining facial-nerve function vis-a-vis the single-dose (GK) approach.

Dr. Chang also does microsurgery on ANs, so you are likely to get an unbiased opinion as to whether radiation or surgery is your best option.

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

deboline

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Re: Gamma Knife vs Cyber Knife
« Reply #7 on: August 05, 2011, 07:47:41 pm »
TW,

Thank you - your post comes at a very welcomed time - you basically re-enforced where I am today. I am leaning toward the fractionated radiation and I am looking to seek another opinion to confirm my decision.  Preserving the facial nerve and not having to repeat the healing process and side effects of surgery I feel is best for me right now where I am in my life. If I am back in this same place in ten or so years, I think I will be okay with my decision since I have just really began enjoying life again the past two years. My biggest fear is if the radiation does not stop the tumor growth - but my thoughts are that either way my facial nerve will be compromised and I would rather it be later and able to say that I did everything I could to protect it.
Thank you again for your opinion - I really need to hear all sides here to be comfortable with my final choice! 
Well wishes!

Tumbleweed

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Re: Gamma Knife vs Cyber Knife
« Reply #8 on: August 09, 2011, 08:48:52 pm »
... my thoughts are that either way my facial nerve will be compromised and I would rather it be later and able to say that I did everything I could to protect it.

It's a highly personal choice, but I'm in complete agreement with you. My guiding principle is, "preserve quality of life now, as much as possible and for as long as is possible."

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

deboline

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Re: Gamma Knife vs Cyber Knife
« Reply #9 on: August 20, 2011, 03:40:33 pm »
Okay, I begin fractionated radiation treatment on Thursday 8/25 at John Hopkins - looks like 5 treatments. The goal is to stop the tumor growth and cause no further damage to the facial nerve. I will keep everyone posted on the outcome!  Thank you for all the support!

deboline

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Re: Gamma Knife vs Cyber Knife
« Reply #10 on: August 29, 2011, 06:44:25 pm »
Today was hump day, I have received 3 of the 5 treatments! So far so good, dry scratchy throat, tinnitus is louder and metallic taste in mouth. Fatigue is manageable and spirits are good. The mask is much tighter and more uncomfortable than I thought it would be, but I figure it is better than the frame that the GK comes with. I am using the Synergy machine at John Hopkins. Very impressed with the staff.

Tumbleweed

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Re: Gamma Knife vs Cyber Knife
« Reply #11 on: September 01, 2011, 12:29:06 am »
I'm glad to hear it's going well so far, Debbie. Best wishes for smooth sailing from here on.

TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08

teripo

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Re: Gamma Knife vs Cyber Knife
« Reply #12 on: September 01, 2011, 05:52:05 am »
Hi what is a hypoglossal tumor??

Jim Scott

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Re: Gamma Knife vs Cyber Knife
« Reply #13 on: September 01, 2011, 03:38:06 pm »
Hi what is a hypoglossal tumor??

A fibroid tumor that grows from the hypoglossal nerve (cranial nerve 12 - a 'motor' nerve) and can affect use of the tongue. On an MRI scan it appears very similar to an acoustic neuroma. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

Tumbleweed

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Re: Gamma Knife vs Cyber Knife
« Reply #14 on: September 03, 2011, 12:35:13 am »
I'll add a little to what Jim astutely said: Like an acoustic neuroma, a hypoglossal neuroma (AKA hypoglossal schwannoma) is a benign tumor that grows on a cranial nerve housed inside a bony canal . With an acoustic neuroma (AKA vestibular schwannoma), the bony canal in question is the IAC or internal auditory canal. With a hypoglossal schwanomma, the affected nerve is that which grows inside the hypoglossal canal.

Hypoglossal schwannomas are 100x more rare than acoustic neuromas and affect an estimated one out of every 10 million people. The odds of someone getting both a hypoglossal and an acoustic neuroma are astronomically remote. When I was informed by Dr. Chang that I also had a hypoglossal tumor, the first words out of my mouth were, "So, I won the s**t lottery twice."  :D

Best wishes,
TW
L. AN 18x12x9 mm @ diagnosis, 11/07
21x13x11 mm @ CK treatment 7/11/08 (Drs. Chang & Gibbs, Stanford)
21x15x13 mm in 12/08 (5 months post-CK), widespread necrosis, swelling
12x9x6 mm, Nov. 2017; shrank ~78% since treatment!
W&W on stable 6mm hypoglossal tumor found 12/08