Author Topic: CyberKnife or wait??  (Read 656 times)

Fespy54

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CyberKnife or wait??
« on: January 28, 2024, 07:40:54 pm »
New to group...diagnosed with benign VS 15 months ago. My Neuro at that time said to wait and observe as the size of my tumor was only 6x4x2 mm. A year later it has grown to 8x6x5. Got a new neurologist who said to consult with a neurosurgeon. My symptoms are mostly ear "clicking" which was the symptom that started this journey, altho all doctors are telling me that they don't think the ear clicking is related to the Schwannoma. I also have some mild dizziness or Vertigo at times and have been experiencing moderate to severe hearing loss in both ears. The Schwannoma is located right side of brain near Meckles Cave. So the neurosurgeon said the location is not operable bc its in an extremely sensitive area and the risk of excision is too high. The way to go is CyberKnife and probably only 1 treatment since the size is still quite small and the radiation risk of damaging other nerves or parts of brain is less. Basically better to do CK when it's smaller verse larger is what I'm being told
My questions:
Has anyone had their tumor located in this same area of Brain and heard same thing from surgeon. He basically came out immediately saying that any doctor who operated on this would be "malpractice ". I did like this surgeon very much and he came recommended but I'm just wondering if that is accurate thing to say. Not like I'm looking to get brain surgery but just wanted to hear from anyone else on this.
I was told that the tumor is in a spot whereby more growth risks it pressing on trigeminal nerve which of course leads to all kinds of serious issues.
Plus it's near the brain stem. Doc said I could wait, but considering it's small size the CK option would be very effective and likely only 1 treatment. But again, I could wait and watch if I desired. My situation is not urgent. I have been leaning towards doing the CK but wondering if I am being too hasty given I don't have many serious symptoms.  I would love to get rid of the ear clicking which drives me crazy more then anything but not sure the procedure would eradicate this. Of course my hearing continuing to diminish is an issue. I'm 60 yrs old so some of the loss is likely age related. I have appt this week with the CK team to consult and begin the process but having some doubts if I should just wait...it's probably inevitable that I would need to take action but is it worth waiting? Appreciate any comments or thoughts here. Thanks!ยน

donjehle

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Re: CyberKnife or wait??
« Reply #1 on: January 29, 2024, 06:16:58 pm »
Thanks, Fespy54, and welcome to the ANA Forums!

My Vestibular Schwannoma is not located in the area where yours is, so I can't really comment on your question.  But one of the benefits of the forums is that when we post and when others reply and share their experiences, it benefits the whole community.  So, I am looking forward to others with a similar location replying to your post and contributing valuable knowledge to all of us.

Best wishes!
Don
Burning Tongue, Loss of Hearing & Balance, and Tinnitus led to MRI. Very small AN found on 11/23/2021
While watching and waiting, lost significant hearing. WRS now at 12% (down from 100%). Was fitted with CROS system on 3/7/22.  Stable MRI on 7/29/22
No treatment yet.

mwatto

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Re: CyberKnife or wait??
« Reply #2 on: January 29, 2024, 06:24:47 pm »
The ear clicking could be TMJ- what I was diagnosed with for stabbing ear pain- which eventually also led to the discovered AN. Happy I had CK 5 years ago...abt to have next MRI. No regrets has shrunk by half and no side effects. Abt to have annual audiogram but my hearing 6 months ago was around 90% in that ear.
Michele
20 x19x14mm Cystic AN diagnosed Feb 2019. CK.
Mri 2019 shrinking: 18x17x13 mm.
Mri 2020 - no cysts visible stable.
MRI 2021 stable no change
MRI 2022 stable no change.
MRI 2023 Further reduction 12x12x10mm!! Hearing 85%
MRI 2024: No change AN or hearing

DanFouratt

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Re: CyberKnife or wait??
« Reply #3 on: January 30, 2024, 04:34:29 pm »
My tumor was not in the same location.  However it was set up for the one and done treatment.  I had hearing loss so that was not a consideration. I went CK the end of September and have not regretted it.  Besides hearing loss and tinnitus I had no other symptoms and did not want any, hence the decision to get it done. I was back to near 100% in three days.  I have had no other symptoms develop since then.  I have had a few "wobbly" moments since the surgery but I have discovered I have aortic stenosis, wobbliness is a system of that too. So not sure if it is an issue. I am a firm believer in the CK approach if it works for you.

Good Luck on your journey,

Dan
Dan Fouratt             63 years old
Vestibular Schwannoma
Discovered 9/15/21  5mm x 11mm
MRI 4/11/22            No change
MRI 1/9/23              7mm x 13 mm
MRI 6/19/23            No change
CK  9/15/23             TBD Not Scheduled

Fespy54

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Re: CyberKnife or wait??
« Reply #4 on: February 02, 2024, 01:49:55 pm »
I had second appt this week with the Radiologist and found out the CK treatments would be total of 5 and not the 1 that I was told during my initial consult with the neurosurgeon.
Being told that because of the location of the tumor (Meckles Cave) more than 1 treatment is necessary. Also discovered that I actually don't have an AN, it is being called a Schwannoma of the 5th Cranial Nerve. Teh tumor is not located in the Auditory/Vestibular Canal. Radiologist said does "not like" the location of this as it is close to brain stem and of close to Trigeminal Nerve. While I don't have any of the symptoms related to Trigeminal Neuralgia yet, if tumor continues to grow and it does being pressing on this nerve, the typical symptoms are not anything I want to experience I am being told. In the old days they used to call Trigeminal Neuralgia the "Suicide Disease" as people could not take handle the symptoms and the pain. Certainly don't ever want to get anywhere close to this so I think I am going forth with the CK treatments and hope for the best. Thanks for your replies!

carriekartman

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Re: CyberKnife or wait??
« Reply #5 on: February 03, 2024, 04:24:04 pm »
Good luck! I've just begun planning for a 5-session treatment of fractionated radiotherapy, and am optimistic about this approach over the "one shot" treatments.