Radiosurgey Vs. Traditional Surgery

[ChadBurns]

Hello All,

My name is Chad Burns and I was reaching out to the group for some general insight and direction.  I was recently diagnosed with a right sided acoustic neuroma (2.3X1.7X1.3cm) in Oct. of 2020. I have had few symptoms only of which being some intermittent tinnitus and muffled hearing.  I have approached this condition very openly as it seems there are varying options for treatment. I was interested in the cyberknife treatments for acoustic neuromas and was hoping to get some information from everyone.  have consulted with several physicians and it seems, as I’m sure you are all aware, treatments differ variably. I am a nurse practitioner with background in the operating room and have seen several of these traditional surgical approaches.  I am not necessarily leaning either way, Im simply looking for advice and possibly some personal experiences with different treatment options.  I know there are certain factors to consider and the treatments vary accordingly.  I have been doing much research and trying to understand the development of this condition, but the scenarios are endless, as this is most certainly one of the most complicated diagnoses I have ever encountered as a provider and now a patient.  I hope you all can provide some insight and/or expertise with this condition.  I wanted to contact this group discussion board and I hope to initiate an informational discussion thread.

Thank you,

Chad Burns
814-779-0122
c.b.burns1@eagle.clarion.edu 

[mwatto]

Hi Chad  my AN was a similar size and I had CK two years ago with no issues. My symptoms at the time were very mild- occasional headache and they thought TMJ. Anyhoo I have had two follow up MRIs showing slight shrinking (the first one more obvious ) and the cystic component had disappeared. ReceI had earache again but this went away with 1 mg valium and otherwise I have had no side effects - apart from slight dry eye on AN side - which I had before actually and I make sure I use ointment etc ongoing and I have optometrist checks. Otherwise all good so far. Feel free to PM me. I dont have tinnitus - I work only inflammation every day and keeping my BP in check. I take melatonin compounded, bromelain and Vit D3. Also abt to start Honopure (will break open a capsule and try half to assess any side effects.) I collect articles on it all and I have a good article on the AN biology which has helped me in diet and supplements (not a fan of latter but I do feel it has helped.) I do swear by my melatonin if only as its calmed my brain and helped with sleep. Hearing and balance is fine and things stable.

[Greece Lover]

Hi Chad. Sorry you had to join the club. One of the weird things about these tumors is that there are so many treatment options, and, thus, many different opinions! And, even Doctors will often push patients towards the treatment with which they are the most familiar. So it's good to do your research. And, you have time.

For me (and I"ve heard others say this): I just wanted the thing out. I also felt like surgery gave me the best chance at the best long-term outcome.  Surgery also assumes a lot more short term risk.  So far, I've been very glad I had surgery, via Middle Fossa approach, and my hearing has been stable.  I think I go this summer for a 4-year MRI follow up, and hoping for good news there.

The reasons agains some type of radiation, as I"m sure you're aware, are 1) lack of long-term studies, so sometimes it depends on age.  For example, I was told I was maybe too young for radiation.  2) even if the radiation takes care of the tumor, your hearing can still deteriorate.

Good luck!

Micah

[ChadBurns]

Thank you both,
I had my appointment down in Pittsburgh and received some differing information.  I met with ENT initially and he stated simply this was a medium sized tumor and options would be: radiation in 3 separate sessions or a retro-mastoid surgical approach.  He stated with the surgical approach I would most certainly lose my hearing.  He stated he was surprised how well my hearing still was in the affected ear.  He also discussed how radiation could preserve hearing but the research studies with radiation treatment aren’t far out enough ( >10years to show evidence of tumor re-growth).  The patients he has treated with radiation have had positive results in regards to stopping growth. 
 
I also met with a neurosurgeon who works with ENT at UPMC.  He stated if it was his choice at 47 years old he would choose radiation.  He explained he is at the height of his career and I assume this would affect his overall status.  He did explain the distinguishing factor would be my age and outlook/choices may be different.  He discussed risks and benefits to both radiation and surgery. 
 
My question in exploring these approaches is this:  With how well my hearing is at this point and wanting to still preserve what hearing I have left, Why would surgery be a better option?  I know eventually, say 20 years later, surgery may be more complicated if needed and re-growth isn’t exactly known.  I feel if radiation can stop growth and if hearing preservation can be obtained why not attempt this less invasive approach first.  Factors certainly to consider being tumor growth and location in relation to vital areas.
 
Hopefully looking for some insight as I just want to understand this condition and treatment options fully so I can make a decision.  I know much of this is preference, but also there is a factor of experience involved in this situation, as I am reaching out to you.
 
Thank you for your continued support and experiences!
-Chad

[Greece Lover]

Sounds like you're getting some good advice.  If you're not a candidate for a mid-fossa approach (which many surgical centers don't do and requires a relatively small tumor) then maybe the radiation is the best way to go, especially since surgery would guarantee hearing loss. 

good luck!

[ChadBurns]

Thank you for the advice. Unfortunately I am not a candidate for the middle fossa approach and I do agree with radiation possibly being a viable option.  Its difficult because most surgeons base much of this on my age at 32 and the amount of years left.  I do still have preserved hearing about 70% and its difficult to appreciate why I would choose a surgical approach knowing this will more than likely eliminate my hearing.  I know radiation has downsides and causes scar tissue, but why not attempt this approach initially and attempt to save what may be left?  Its a question I have been pondering...
thanks,
Chad

[erntinta]

Hi Chad.  Your AN is small enough that Radiosurgery (SRS) would probably be a good choice.  I'm glad that's what I did anyway.  I would not delay too long.  Even though it's slow growing it can do damage as time goes by.

Someone please correct me but I believe traditional surgeries that try to preserve hearing tend to be more risky.  Before I opted for SRS I also consulted with surgeons at Stanford then got treated at Kaiser, my provider.

Good luck making your decision and with whatever treatment you choose.

-Tim

[gary.s]

Hi Chad,

I had five sessions of Cyber Knife in April 2018. I was told by both neurosurgeons and radiologists that I would inevitably lose my hearing regardless of what approach I take. Prior to radiation, my hearing in the AN ear was about 50%. Now that it is about 2 1/2 years post radiation, I am totally deaf in the AN ear. I was not expecting to retain any hearing, I just wanted to stop the increase of other symptoms such as facial numbness, dizziness and tinnitus.

Maybe I was not a good candidate for retaining any hearing in the AN side due to the position of my tumor. It is hard to tell. It would have been wonderful to retain some hearing.

I was 68 years old when I had Cyber Knife. I was a candidate for radiosurgery due to my age and the size of my tumor. Apparently age is an important factor with radiosurgery because no one knows what the long term effects will be.

It is important to find a doctor that you trust and have confidence in, and then go for it when you are ready. Best of luck...

Gary

[ChadBurns]

Thank you Gary,

Age seems to be the distinguishing factor and it does make the decision difficult in that the studies are not correlational with post radio surgery 10-20 years later.  But I do not want this to sway my decision in not attempting a treatment that has reasonable potential.  I have been weighing the pros and cons and it seems I could go all day with either decision.

Thanks,
Chad

[Matey]

Hi Chad! I was in similar position like you. I am 38 years old father of three kids and having agricultural business here in Bulgaria. I chose radiation, did three sessions 6 gray each! Before the radiosurgery I checked my hearing and it was around 70 percent, I checked it again today after three months and it’s still 70 percent! I have no idea how it is going to be in the long run but hey you never now what is going to happen tomorrow either! I was more scared about the facial nerv rather than losing hearing that’s why I chose radiosurgery. The most important thing is to stay positive about it and not think much about it..Good luck with whatever treatment you choose...

[ChadBurns]

Thank you very much for the input.  What makes this condition difficult is there really is no 100% certain answer.  Even with traditional surgery there is a chance that the tumor may not be fully resected and with radio surgery there is a chance the tumor could cont. to grow years later following an absence of growth making a surgical option more difficult.  Ive always been one to conservatively treat conditions but with acoustic neuromas there invariably will always be a caveat to any approach.  Im just trying to weigh all my options and choose what could or hopefully be the best decision.  Certainly one of the more difficult decisions ive ever made in my life.

Thanks for the cont. info and support,
Chad   

[gary.s]

Hi Chad,

You have not mentioned if anyone has suggested just waiting 3-6 months, take another MRI and see if the thing is growing or stable. A lot of us waited until there was an indication that growth was occurring and then we went forward with the decision to take care of it. Mine was stable for an additional year after the initial diagnosis, then I noticed symptoms were changing and it was time deal with it. Watching and Waiting did give me time to do more research, see additional doctors and prepare myself for whatever was going to happen. Just a suggestion. Best of luck.

Gary

[ChadBurns]

Thank you Gary. the docs I have spoken with have lightly mentioned this and im not 100% sure as to why im guess ultimately with my age something has to be done and the size isnt extremely large but not small either.