Radiation and a Weakened Facial Nerve

[LCT]

Does anyone have any experience with radiation following a surgery that weakened the facial nerve?  I ask because I am unfortunately part of the group that has experienced regrowth (or a new tumor on the same side).  The uncertainty is because the current AN did not appear until 10 years after my initial surgery.  I am in wait-and-watch mode now.  Unlike the first time (4.5 cm AN), I have many options this time.  My last MRI had tumor # 2 at around 11mm.  I am leaning heavily toward radiation this time around.  My only question is what can I expect to happen to my facial nerve?  My facial nerve was NOT cut during the previous surgery, but it was weakened.  I have partial facial paralysis on my left side.  I would hate to lose what I do have as I look somewhat symmetrical at rest.  I am not looking for opinions on machines - Cyberknife, Gamma Knife, Novalis, etc., as we are fortunate to have many options in Texas.

But I am looking for information on radiation to an already damaged facial nerve.  Thanks in advance.

[jerseygirl]

Hi, LCT,

My tumor has also recurred 10 years after the initial surgery and I have been waiting and watching for 8 years and decided fianallly to take it out this summer. My facial nerve was not cut during the first surgery and is functioning perfectly, no paralysis whatsoever. However, every surgeon, regardless the approach (micro or radio) says that there must be some structural damage to my facial nerve because of the original huge tumor and the surgery to remove it. The radiation specialists say that the radiation will hit the facial nerve along with the recurrent tumor because there is no way to know how close to the tumor surface the nerve is, it might run right through the tumor. In this case, radiation will probably do an additional mild damage. So, the original mild damage plus the new mild damage in my case can translate into moderate damage. The prognosis, obviously, is a lot better for people who have not had a surgery previously. On the positive side, I was told, the facial nerve is one of the most resistant to radiation cranial nerves. It is the hearing nerve ( the one I no longer have) that is more of a problem. My tumor is now medium sized and is pressing on the brainstem, so I decided against radiation and going for another surgery, this time endoscopic.

There is no right and wrong decision here. Only you can decide what is best for you and which risks and consequences you are willing to live with, so research, research and research. Talk to as many experts that you can and listen to every one of them. Then you will be satisfied that you left no stone unturned and gave yourself the best opportunity. Good luck and best wishes.

                Eve

[Dealy]

I have too agree with jersey girl. I also I radiation-FSR-Linac in Fractionated segments. Was also told my doctors that facial nerve is the most resilient. However since yours has been comprismised somewhat already-I would get a definite stong 2nd opinions on the aftermath of radiation. However-lucky for you tumor as you say appears small enough that perhaps that much will not be affected. Not familiar what you have in Texas-but choose a facility that can give you a good track record and not just numbers to impress. Good luck on your choice. Not always an easy one too do. Thanks-Ron

[macintosh]

Dear LCT--

I don't have direct experience with this issue, but I can pass on what I've seen in the medical literature. The effects of one-shot radiation on the facial nerve have been dramatically reduced since the establishment of lower doses in the mid-90s. Since serial radiation uses even lower doses, the theory is that this should be even safer. The studies I've read tend to indicate that it's difficult to show, with statistical certainty, that serial radiation is actualy superior. If I were in your position, though, that's probably what I would do. I had one-shot LINAC radiation a month ago for a small AN, no noticeable side effects so far.

Mac

[MLB57]

Hi LCT--I have a re-growth of my 1 cm rt AN removed Jan 2001 via retrosigmoid sub-occipital approach(UMass Med Ctr, Worc MA).I have since last June consulted w/UMass Neursourgeons/Radiation speicalists and also w/Dr Noren (NE Gamma Knife Ctr, Prov,RI) and was ready to have GK but one UMass MD wanted me to see Dr Barker at Mass General (Boston, MA) for another opinion. I have an app't to see him tomorrw (March 26). One of my questions will be if I decide on Gamma, in his opinion, will it affect my already compromised facial nerve. My AN was "densely" adherred to my facial nerve and the right corner of my mouth always feels "stuck" and my right eye closes but not as tightly as my left eye. Dr Noren of RI alluded to the fact that my facial nerve would not be further damaged--but I know radiation can cause post-treatment swelling (months later), and if the tumor is growing right along the same spot as before I would think the facial nerve could be further irreparably damaged. It is refreshing to know that accodingi to other posts here the facial nerve is most resilient. In any event I will ask and let you know...

Regards, Mary from MA (one of the NE Maxwell Brunch ladies!)

[MLB57]

Hi LCT--Mary, here, back from my Consultw/Dr Barker at Mass Gen (Boston, MA) and I have to give due credit to everyone who has responded to your post here--they alll pretty much mirrored what Dr Barker told me--You and I have had surgery and our facial nerve (altho not cut) was traumatized and weakended from surgery and altho it is very resilient an already compromised one may not bounce back like a non-traumatized one (my words)-- he felt the FSR Lineac would give the facial nerve time to recover between treatments. He recommended I consult w/Dr Loeffler at Mass General so I will make another trip to Boston but I want to do lots of research in the meantime--pros and cons of one-shot (Gamma) VS FSR over several days/wks. Dr Barker told me regarding surgery that he could take it out again but w/10% or higher chance of further damage to my facial nerve--and that's all I had to hear (I was against repeat surgery anyway). He said there is no sense in wait and see as it is clearly re-growing (I agree with that also) and he wasn't concerned with the possibility of radiation turning cancerous (my main concern) so I feel at peace I chose the right option with radiosurgery. 

So now I must decide which radiation to have and when..  I hope this post has helped you!! My best wishes to you!!  It's certainly not fun having to deal with this again but I am thankful surgery isn't my only option... Take care... Mary 

[LCT]

Mary -

Thank you very much for the reply.  I am trying to stay positive, and believe that there is a really good chance that radiation will not further comprise the facial nerve.  My neurosurgeon, indicated that (in his opinion) an additional surgery would pose a greater risk to the facial nerve this time around.  Like you, that is all I needed to hear.  I think radiation offers a better probablity of a positive outcome with the facial nerve.  The one difference that there seems to be between our cases, is that my doctors would like me to continue to wait and watch.  Two MRIs have now confirmed that it is growing, but they have suggested that I wait a little longer due to my age.  Why?  Because I am only 34 years old.  There is not a great deal of long-term (beyond 20-30 years) history of tumors treated with radiation, and we are a little curious about what will be going on in my head when I am 50, 60, or 70 years old.

Jason

 

[MLB57]

Hi Jason--I totally agree with your wait and see approach due to your age--I was 50 when I had surgery and do not regret that as I wanted nothing to do w/radiation at that time as I had read differing opinions regarding the possibility that the AN would turn cancerous 20 or 30 years in future.  So if I were your age I would wait a while before making a decision... I just turned 58 so I will take my chances and go w/radiation... Just how it will be delivered is my next decision.

I am ever thankful for the ANA website as we all can share our stories, experiences, knowledge and support!!!  Best wishes to you, and let's hope the radiation will stop it forever!!!   Regards, Mary from MA... 

[SandyInKY]

I have no experience as this is my first diagnosis with AN.   Mine is 11mm and I have been talking to Br. Brackmann at The House Ear Clinig in LA.  He want to do middle fossa and I was planning on doing that.  I am concerned about the potential complications such as all of you have had.  I am 42 so I also hope to be around for 20+ years.  I am concerned that if something goes wrong with the surgery I will have 40+ bad years compared with 20 good ones.  Where did you guys get yours done and if given the chance to make the decision again, would you change it?

[LCT]

Hi Sandy:

My surgery was done here in Houston at Baylor (Dr. Coker).  I do not have any regrets about my initial decision.  I was 23 at the time, about to graduate from college, and my tumor was 4.5cm.  Surgery was really the only option (in my opinion) due to my age and the size of the tumor.  I had translab so I have total hearing loss on my left side, but I have adapted really well to that over the years.  Believe it or not, the only symptom I had was hearing loss.  My hearing loss was very rapid.  It seems like I went from very serviceable hearing to basically no hearing right around the time we found my AN.  So losing my hearing was not at all an issue to me.  What really frightened me was all of the possible post-op problems that can arise (especially with large tumors).  My surgery was 14-1/2 hours, and my tumor was supposedly very sticky and heavily engaged with my brain stem and facial nerve.

All in all, I am very fortunate to only have partial facial paralysis, as my facial nerve was not severed (but it was weakened).  I do use a lot of eye drops (Celluvisc), but my overall lifestyle is not terribly compromised.  I have e beautiful wife, and a good career, all of which was accomplished post-op.  I am not the "same" as I was before surgery (less athletic, less confident, etc.).  But I have a great life.

The two really unfortunate things in my life are that I now have a regrowth (10 years post-op).  And I do feel that sometimes people unfairly judge you based on the facial paralysis (in a job interview for example), but I am still very fortunate to be where I am at.

I do not blame my surgeons for the regrowth.  Who knows, maybe they did leave a small cell in there.  Or maybe this is a new tumor all together.  I am just thankful that my doctors insisted on continuing MRIs many years after.  Many doctors stop post-op MRIs after 5 years.  I would have no idea that I had another one.  At least I have options this time.

Could the doctors at House have done a better surgery the first time around?  Who knows?  They are supposedly the best.  But I can't think about those things because there is no way to know.  My doctor is extremely experienced, and I think that overall he has helped me to make the most of a bad situation.  Hope this helps.

Jason     

[jcinma]

Hi all-
I had surgery for a 1cm AN (total removal, so I was told) back in 1996 with no effect on my facial nerve at all.  I had surgery for a reocurrence in 2005 for a 3.2cm. I chose to have the tumor debulked to preserve the facial nerve and followed up with 30 treatments of FSR(this all was done at Mass General). After surgery I had and still have some very minor weakness and numbness along with a dry eye (the dry eye has actually improved some)The tumor was and still is adhered to my facial nerve and I was very concerned about the radiation doing more damage.  I am very happy to report that there was absolutely no additonal damage done by the radiation and my follow up MRIs show no growth in the tumor that was left. I did not have the option of radiation alone as there was some brainstem compression and there was concern that any post-radiation swelling it could be very dangerous.  Wishing you the very best possible outcome-
Jane

[ppearl214]

Hi Sandy and welcome.

there are many threads in the "Archives" as well as "Pre-Treatment" forums that touch on those decision making processes that many here have made (mine, I think, it buried in the archives from last January/February).

To answer your question, I had Cyberknife done here in Boston *blows kisses to the New England AN'ers!  * 11 mos ago.  In the follow up's since, I'm right on target for what the treatment should be doing, I still have 100% hearing retention for what my hearing was at the time of treatment, minimal side affects and doing fine.  I also consulted with HEI (Dr. Brackmann) and for me, my decision weighed on... do I want to go invasive or not? 

It's a personal decision, based on your situation (physical, emotional, home life, financial, etc). There are so many factors that everyone has to take into consideration in making the treatment decision.  The best advise everyone here gave me during my decision process was... "go with your gut and never look back on your decision as it was the right choice at the time".  And they were right

Hang in there... and again, welcome.

Phyl