Outcomes of Microsurgery vs. Radiosurgery

[ppearl214]

Hi all,

As you know, been researching all of my options (deciding now what treatment process to do).  I've read many of the posts on the site and kind of doing a mini-survey of outcomes so I can make a better-informed decision of what treatment plan to follow.   

I read outcomes of the microsurgery (as you may know, Middle Fossa has been recommended to me).  Also weighing out CyberKnife as it is available to me locally.

So, wanted to try to group all answers together. I've read about headaches, skull cement issues, vertigo, hearing loss, facial nerve numbness/paralysis, droopy eye/dry eye/eye weights, etc.

If you have had any treatment, microsurgery or radiosurgery, can you please share:

1. What procedure you had done?
2.  What risks were you told in advanced
3.  What were your outcomes?

This will truly help with, not only me, but others in my shoes in the decision making process......

..and as always, I thank you in advance for any and all inputs.

Phyllis

[jamie]

1. What procedure you had done?

CyberKnife at Barrow.

2.  What risks were you told in advanced

The usual risks for radiosurgery, although my neuroma wasn't vestibular, so they may not all apply as mine was on the lower cranial nerves. I was told of the slight possibility of swallowing difficulty, which didn't happen, and that in the unlikely event CK didn't work, surgery may be trickier, but there is no real concensus on that risk.

3.  What were your outcomes?

After only three months, my neuroma was completely necrotic (dead) in the center, and the symptoms it caused were gone. No more earaches, headaches, and even the stuffy feeling in my ear (due to eustachian tube dysfunction) is gone. At this point I feel 100% normal, like nothing ever even happened. I usually forget about the whole thing til I remember to check up on everybody on these boards. I usually read posts saying people will never be the same, but for the worse. So far I feel amazingly fortunate, I don't feel the same, I feel better. I really appreciate life and modern medicine, and I'm so thankful that my quality of life went back to where it was before I started getting symptoms.

[dally1932]

Hello, Chuck here. Had my AN removed in June 2002.

Procedure: Retrosigmoid (Microsurgery)

Risks: My tumor was diagnosed as epdermoid cyst, but when I was opened up it was discovered to be an AN. Upfront risk were possible hearing loss.

Outcome: Deaf in the left ear, vertigo, balance problems, chronic head pain on the leftside behind my ear and into the neck area, depression from being in pain and unable to continue working.

Thoughts: If I had known it was an acoustic neuroma, I may have taken the wait and see approach as my only symptom before surgery was vertigo when I turned my head to the right. It really is a personal decision, even with all that is posted, everyone's case seems to be a little different.

Good luck with your decision.

[gcb]

Phyllis.

I went the GK route, for ME it was a better decision. The risks associated with actual surgery (again in my opinion, were not worth the risk)
Big items on my list were:
•   Hearing loss
•   Tumor re-growth
•   Facial never issues
•   CSF leak and associated side effects
•   Chronic Headaches

The percent odd of developing one/some in most of these were close to xx% each.

Studies Jamie and Mark found that REALLY helped me are found in one of my other posts.

http://anausa.org/forum/index.php?topic=349.0

Thanks again Guys!!!

Good luck with your decision Phyllis.

Chuck

[stein78]

1. Surgery - retrosigmoid
2. Good chance of being deaf in the ear, 20% chance of dealing with some facial paralysis, small chance of CSF leak, some headaches post-op that should go away.
3. Deaf on the AN side and fatigue from time to time.  Minor delayed facial weekness that went away after 3 weeks.

[FlyersFan68]

1. What procedure you had done?  translab 1cm.

2.  What risks were you told in advanc! SSD, Balance at first then compensation would take hold!

3.  What were your outcomes? Tumor Rection, SSD,   NO csf leak, facial problems, taste problems, cognitive problems, eye problems!
    Note: I did have neck pain on and off for a while which has completely resided long ago. Balance not a problem now (was challenging right after surgery). No stitches needed to be removed since mine dissolved. No fat taken from stomach. Was losing hearing over the years and lost all hearing on AN side following surgery. Had tinnitus before surgery and very mild tinnitus afterwards. Ear Fullness & Pain gone. No problem laying on surgical site and can barely notice that I had surgery. Doctor pleased with 1 year follow up MRI and next one will be this April. (After that who knows and will ask doctor!)
 
    I can understand your confusion, we have all been there. Seems like you have good options with highly skilled doctors both locally and in L.A.. Unfortunately, we never know what our outcome will be therefore we make the best possible decisions we can. For me, I am a worrier by nature and elected surgery because I did not want to monitor it's activity for life. I wanted it removed! The tumor took my hearing and I would never give it the opportunity to damage another function. This tumor is difficult because even though "benign" it can cause damage to various surrounding nerves. It's not like it's on your back. Even though AN's are benign they still can cause damage simply by growing. We all look at this as the enemy or "invader" within some degree even though it's your own cells. When someone gets radiation they hope to shrink or kill the tumor. One can't deny the fact that it's there. Just like when someone elects to have surgery to get this "thing" out of their head. We all need that mental relief in some form knowing we're controlling, killing or removing the tumor/problem/enemy (whatever you want to call it.)  Some may be fine knowing or believing it's dead and will never grow again while others need to know it's gone..period!  Radiated tumors can continue to grow over time while surgical resected tumors can grow back over time. We make decisions based on our own individual needs and well being. I had it removed because I knew I would worry in between every MRI. That's JUST ME! My friends and family said your young and it can be dangerous in time so get it removed and be done. This was somewhat helpful because I needed support but it was still my head this was in. I accepted their advice but knew I had to talk to others and seek out information. The decision is yours and only yours. Unfortunately, there are no guarantees with any treatment.  I do respect those that can monitor this for life and they are strong. Some may think I'm strong for choosing surgery. Some are lucky to have various treatment options while others have no choice. We all become stronger and "move on" the best we can.
    In closing, It's obvious that all doctors that treat AN'smake money not just surgeons. I've seen a gamma knife commercial three times last night. Everything is a business (sad but true.)  One will always promote what they do. Fortunately, surgeons are getting better and radiation machines are being replaced with better ones. I wish you the best with whatever you choose. You're part of a another family now!  Good Luck!   

[eronrabun]

"1. What procedure you had done?
2.  What risks were you told in advanced
3.  What were your outcomes?"

Procedure:  Endoscopic acoustic neuroma removal by Dr Shahinian in Los Angeles, CA.

Risks:  The only thing that the doctor could not predict was hearing loss.  He was very confidant in 100% removal & total preservation of the facial nerve.  He told us balance would be affected, but only temporarily (less than one month).

Outcomes: 4 months post-op - my husband is doing wonderful.  The ONLY way you can even tell he has had surgery is the loss of hearing in his affected ear.  His recovery was amazing.  No CSF leak, no facial problems, no problems swallowing, no taste problems, no dry/irritated eye.  He has a 3-4 inch long scar behind his ear that is now covered with hair.  He has returned to work full time and is doing everything that he did before surgery.  My husband was extremely concerned about facial nerve paralysis & headaches, but he has NONE!  He has even said he thinks his hearing is improving slightly (but only slightly).

If anyone has any questions, please don't hesitate to contact me by email!  eronbrown1@yahoo.com

[ppearl214]

I cannot thank you all so so very much for sharing your personal situations with me and others in my shoes. By keeping this centralized, it helps those of us doing the march "up the hill" vs. coming "down the hill" in a VERY insightful perspective to help us with what could/could not happen by what procedure, thus, aiding us in making our own decisions. 

Many of you note microsurgery and would be curious to hear more from anyone that has had radiosurgery to help balance the inputs to help with decision making process.

For those of you that have shared your procedures, outcomes, thoughts and... as always, your terrific words of support, I thank you.  A new family (yes, FlyersFan68, you are correct) I am honored to be a part.  Thank you

[ppearl214]

*bumping this thread up to see if others will reply, especially anyone that has had radio-surgery (CK) done*

[ken]

I am having proton radiation at Loma Linda after 12 treatments I have no side effects at all. I still have 16 more to go, But great so far. Ringing and fullness seem less. So far I could not have asked for a better experiance.  Ken.

[Mark]

Hi Ken,

Very glad to hear your proton treatments at Loma Linda are going well and best wishes for continued success. I was curious if Loma linda has any studies on their success with AN's in this treatment that you could share with the board. The question gets asked from time to time as people review treatment options and I'm not aware of anyone who actively posts on the board who has provided documentation on it. Other than undertstanding that it is in the radiotherapy category as opposed to radiosurgery, I personally don't know much about it and have never found any supportive studies beyond the marketing stuff. Beyond that I think I've interfaced with 3-4 people over the past few years and heard very mixed reviews of their experiences. Anything you could add on the subject would be appreciated by a lot of folks here I'm sure.

mark

[ppearl214]

Hi Ken and thank you so much for sharing this with us. I also checked into Proton treatment at Mass General Hospital. Like Mark noted, I could not find much in the way of data on this kind of treatment but thrilled to hear that things are going well for you and these treatments. Continued success and good wishes to you... and thanks for sharing this

Phyllis