retrosigmoid vs. radiation and facial nerve and hearing complications

[formula30]

I have seen the doctors, neurologist, neuro-otologyist, had mri brain scan with contrast, 1.9cm, doctor said they would do retrosigmoid if I decided on surgery, hopefully that will preserve my hearing....which luckily isn't too bad, more problems with word recognition impairment........I have read on these boards that there is more problems with this approach for the facial nerve.....did anyone else find that.  Radiation seems much less invasive, quicker recovery time.....but long term problem can crop up, with the facial nerve and hearing, I am trying to make an informed decision.......not jumping for joy for either choice, and wish that the doctors who I feel are much more qualified to make this decision.......could do just that.  I am freaking out a little........but who wouldn't. 

[leapyrtwins]

Formula -

I responded to a similar post of yours on another thread yesterday.  Freaking out a little is more than normal - most of us experienced this emotion at least a few times during our AN Journey - so I can totally relate.

I had retrosigmoid and had very slight facial nerve damage for a day or two post op.  A dose of steroids cleared it up.

I chose retrosigmoid in the hopes of saving my (diminished) hearing; I had pretty good word recognition.  When they got inside my head they were able to see that the tumor was wrapped around my hearing nerve (something that isn't evident in an MRI) and they had to "sacrifice" the hearing nerve to remove the entire tumor.

Retrosigmoid gives you a chance of saving your hearing, but it's not a very big chance.  Did your doctor quote you statistics? 

I wasn't too devastated by my hearing loss post op because I knew going into the surgery what my odds were and I was comfortable with them.  I realized there was a very good possibility that I would end up SSD, but I felt the doctors had to at least try to save my hearing.  I went on to get a BAHA implant, which has helped me immensely.

While doctors are very qualified to make your treatment decision for you, trust me, you wouldn't be happy with this in the end.  It's also important to note that doctors, while qualified, cannot guarantee patients anything 100% (this goes for treatment in general, not just AN treatment) and they don't want to go out on a limb.  They are very conscious of malpractice suits, and I don't blame them one bit.

Jan

[dalern]

Speaking as a health care professional, I think it is VERY important that you make your own decision.  Not only shouldn't the doctor make the decision for you, but neither should friends or family members.  It's up to you to take all the information you can, from the doctor, from people who have had this procedure (like Jan) and then make your own informed decision.  As you mentioned, their are risks with all procedures and you have to weigh that with what you believe is in your own best interest.  Nothing is 100%, no guarantees.  I know that makes it very difficult.  I had options before my craniotomy and they were difficult decisions.  I even had a husband who was a physician who did NOT want me to have the surgery.  Based on the information I received from my own doctors and from my own research, I decided it was totally necessary for me to have the surgery.  It was not an AN, but another brain tumor.  I knew I was responsible for my own decision, and in the end felt I did indeed make the best choice for me.  Everyone is different and there is no right or wrong here.  Just a personal decision.  I do understand that sometimes it would feel better if someone would just tell us what to do.  In the end, however, I don't think that serves us well.  Good luck to you with your decision.  I am sure it will be right for you.
~Dale

[Lizard]

This can be the hardest part of the process of AN's, I know it was for me.  You need to make sure you are comfortable with your decision and nobody can make it for you.  I wish the dr's all concurred that one form of treatment was the only way to go, but with many of us there were too many options.  I just wanted to let you know that I had retro surgery to help preserve hearing (50/50 chance), I have some, but has never quite sounded right(tinnitus distorts what I do have).  In loud settings I might as well have none, but everyone's experience is different.  I do not have any facial weakness and did not have any problems with this symptom pre-op. 

Hope this helps a little,
Liz

[Tumbleweed]

Radiation seems much less invasive, quicker recovery time.....but long term problem can crop up, with the facial nerve and hearing, 

Long-term problems can occur with hearing after radiation treatment, but problems with the facial nerve after radiation treatment  are extremely rare -- roughly only a 1% chance on average, with your size tumor. Your mileage may vary, based on tumor location.

Here is a copied excerpt of a post I made a couple years ago, comparing surgery and radiation treatments. I hope it helps you.

With surgerical resection (cutting the tumor out), you run a much higher risk of damage to facial nerve function compared with radiosurgery's results in that regard. For example, with my size tumor, I stand about a 31% chance of permanent ipsilateral facial paralysis with surgery, but only 1% chance of same with GammaKnife or CyberKnife treatment. Resection also poses other risks: roughly 10-15% chance of chronic headaches (thought to be due to bone dust being left behind inside the cranium after the operation), a slight chance of cerebrospinal fluid (CSF) leakage, and (very rarely) cognitive or behavioral changes (memory loss and personality changes). And in many cases, surgery involves cutting the vestibular (balance) nerve, whereas radiation treatment preserves the anatomical continuity (but not always full function) of the vestibular nerve... That said, radiosurgery/radiotherapy only (hopefully) kills the tumor and does not remove it (like resection would). The recurrence rate for surgery and radiation are about the same (cited to be roughly 2 to 3% in most studies).

As for radiosurgery, GammaKnife (GK) and CyberKnife (CK) are both more accurate than standard FSR (fractionated stereotactic radiation) such as Novalis. CK is also a form of fractionated radiotherapy, but its accuracy gives it a leg up on standard FSR.

CK delivers a more homogeneous dose to the tumor compared with GK. CK delivers only 15% higher dose to the center of the tumor than at the periphery, whereas GK delivers fully double (100% greater) dose at the center compared to at the periphery. CK advocates believe that GK's higher dose at the center of the tumor increases the chance of damage to nearby healthy tissue. Also, GK delivers one large dose to the tumor because one treatment is all you can do with GK (this is because a ring is fitted to your head for the treatment and, once it's removed, there's no way to get it exactly in the same place for a second treatment). With CK, on the other hand, a thermoplastic mask is custom-fitted to your head and the tumor's location (in relation to the mask and your bony structures) is plotted into the computer; on followup visits for treatment, they put the mask on your head again and you're ready for the next dose. This flexibility allows CK to apply smaller doses to the tumor than GK with each treatment; together, the smaller doses add up to the same total biologically equivalent dose as you would get with GK's one and only treatment, but (theoretically, at least) the hearing nerve and other healthy tissue has time to recover in between treatments (whereas the tumor supposedly doesn't recover as quickly). Presumably due to the fractionating of dosage, studies show CK yields slightly better results at preserving hearing compared with results for GK. Furthermore, GK's ring is screwed into the head (the screws stop at the skull) to keep it stationary (so that the radiation stays focused on the tumor), a mildly invasive procedure. CK is totally non-invasive: a series of overhead X-rays tracks the patient's head movements and tells the computer-controlled CyberKnife machine which way to move to track any small movements the patient may make so that the radiation stays centered on the tumor. GK advocates say that's all well and good, but GK has about 40 years of track record, whereas CK has been around a lot less time and is not as proven of a treatment as GK. (CK was approved by the FDA in 1999, although Stanford University Medical Center has been using it since 1994 in clinical trials because their Dr. Adler invented CK.)

Best wishes,
TW

[Jim Scott]

Hi ~

Your concerns are very typical when faced with an acoustic neuroma diagnosis.  No one wants to make a wrong decision that may result in facial paralysis or other vexing issues.  Doctor's will not make such a decision because it would, as Jan succinctly stated, make them liable to a lawsuit should anything go wrong, later.  Ethically, as a competent adult, you - the patient - retain the prerogative to make such an important decision, not the doctor.  Simply put: it's your body. The difficult aspect of having this responsibility is that any form of treatment carries some risk, due to the critical location of the tumor.  There is no 'easy' choice.  I wish there were.

In my case, by the time my AN was discovered, it was far too large for radiation and removing it surgically had become close to urgent.  My neurosurgeon, well-experienced with ANs, offered a detailed plan for 'debulking' (reducing it's size and cutting off it's blood supply) then radiating the AN to avoid facial nerve damage.  He posed this plan as his choice, in his words "if you decide to hire me".  That kind of humility (from a mature, admired and respected neurosurgeon) and attention to detail (he had the plan ready when I arrived at his office, 24 hours after making a next-day appointment) convinced me of this doctor's compassion and concern.  His credentials were impeccable (a part-time Yale med school instructor) and his experience removing ANs went back over 30 years.  In short, he was an AN 'pro'.  I hired him, he performed the debulking surgery with no complications and the planned follow-up radiation (FSR) went smoothly.  My recovery was excellent and remains so, 4 years later.  Of course, one person's experience doesn't guarantee another AN patient's will be the same - and I'm not claiming that.  I simply wanted to point out that if you focus on what procedure will be best for your situation (not simply convenient) and, above all, retain a doctor that is highly experienced with ANs and respects your concerns (as my neurosurgeon did) you should be fine with your decision and regain some peace of mind, once the choice has been made.  I hope these forums and whatever material you receive from the ANA will help you make that crucial treatment decision.  Just know that, whatever you decide, we'll be here to support and encourage you.  We don't second-guess or criticize another AN patient's treatment decision because we understand how difficult and personal that decision is.  I hope you'll be able to make yours soon and get past this arduous period of your AN experience, as I know you will.

Jim

[leapyrtwins]

I forgot to say in my prior post, that my neurotologist flat out refused to tell me what to do - despite me asking him repeatedly.  Every time I asked, he'd say it wasn't his decision, it was mine. 

At the time it really ticked me off - and I've since mentioned that to him.  But I also told him - after all was said and done - that he was absolutely right.  I was looking for the easy way out and I was scared by my diagnosis; both perfectly understandable under the circumstances.

But the solution wasn't to have him tell me what to do.  The solution was to educate myself, decide what I was comfortable with as far as possible side effects and the statistics related to each, and make the best choice I could for me.  It was a learning process - and it wasn't an easy learning process - but it was necessary; and he was astute enough to know that.  The doctors you are consulting with are probably equally astute. 

AN treatment is a personal choice and if you are lucky enough to have that choice (some don't) you have to do what you feel is best for you. 

Jan

[wendysig]

I could not have put what Jan said any better.  Making the choice regarding treatment is the hardest part of having an AN in my opinion.  Research, research, research and ask as many questions as you need to, both of your doctor and the folks on this forum.  Your gut will tell you when you've made the right choice for you.

Best wishes,
Wendy