Gamma knife didn't work

[madison]

       

Hello- I had my appt. at Jefferson today and have decided to schedule surgery there.  I had g.k. in 2008, with periods of stabilization and some growth. I am having new facial numbness and tingling and the doctor said the A>N needs to come out.  strangely, this seems a long time coming so I don't really feel upset.  I just want to stop all the possible effects the overcrowding of my brain will eventually cause.  I also have a meningioma in my parietal/occipital area that is steadily growing..we will schedule that surgery in about a year per my surgeon's advice.  I must admit the thought of going to house in L.A. crossed my mind, but I don't think this is a feasible choice for me.  I know Jeff is a top hospital in the nation, so I am going with it. the doc said I will probably have translab.  If anyone has had this, and would care to write me about it, i sure would appreciate it. I am wondering also how I will feel after surgery, what my new hairstyle will be(haha) and how well i can get around etc... The doc said I will need o/p therapy but i forgot to get into that-any ideas?  The surgeon said some facial drooping is almost expected, but on this site I see lots of people write "no facial weakness",,,should I be worried by his comment?  thks for your help and advice in advance!

[LakeErie]

Is facial drooping expected? I had a very large tumor removed with 5% of the tumor left on the facial nerve to preserve function. Post-op I was House-Brackmann scale # 2 ( # 1 is normal function.) By the time the stitches were removed, I was assessed back at # 1.
My question in your circumstance would be: is the drooping your prospective surgeon expects the temporary or permanent type.
Pre-op I was advised I had a 10% risk of permanent facial weakness or paralysis due to tumor size, but my surgeon agreed to leave tumor on the nerve if there was any chance of damaging the nerve which reduced the risk. I would clarify the statement about expected drooping with the physician or seek other opinions just to be sure of your decision. Good luck

[mk]

Hi Madison,

I am so sorry you have experienced growth - I understand exactly how you feel, as I have been in the same situation as you and I had surgery this time last year. Have you consulted with any other neurosurgeons to confirm that there is indeed growth? Obviously the fact that you are having symptoms is not a good sign.
Can you remind us what the size of your AN was, if I remember well it wasn't too large.

I am a bit concerned about your doctor's statement that facial drooping is almost expected and that you will need post-op therapy. Sometimes surgeons consider these as certaineties, when dealing with radiated tumors. I was told by one neurosurgeon that I had 100% chances of facial paralysis because of my previous GK. Another one told me that I will need rehab for months. I ran away and found a very skilled neurosurgeon who proved them all wrong.
I would check to verify how much experience does your neurosurgeon have with radiated tumors. Remember, this is your life we are talking about. We have seen here many people with radiated tumors who had excellent results at the hands of experienced teams. It may seem overwhelming right now to travel somewhere else. It was for me. I travelled to the other coast of Canada to have my surgery, arranging it all was a nightmare, but I am so glad I did it. 
It seems that you have lots of time and there is no urgency, so you can use this time to do some research.
Oh, by the way you won't need a different hairstyle. Nowadays most of the patients have minimal amounts of hair shaved, just around the incision (I didn't have any hair shaved).

Don't hesitate to ask as many questions as you want. We are all here to support you.

Marianna

[mindyandy]

Hi there sorry. I would get other opinions so you have options. I had CK done January 2008. I had retrosigmoid 4 weeks ago at House. My AN was on the trigeminal nerve. Read my past posts to know my full story. My situation is definitely different.
keep us posted
Mindy

[Jim Scott]

Hi, Madison ~

I'm sorry to learn that your Gamma Knife treatment failed to stop your ANs growth and now, surgery is imminent. 

I'm one of those AN surgery patients that experienced no facial weakness post-surgery.  In my surgical follow-up visits, my neurosurgeon said that if he looked real hard he could notice a very slight difference from one side (of my face) to the other but within a month, that, too, disappeared.

Although my very experienced neurosurgeon never gave me any guarantees, nor did I expect any, he never said anything about facial drooping being 'almost expected' and we talked - a lot- about possible facial weakness issues.  I would seek clarification on this from the surgeon. 

As for hair; they only shave a very small amount for the surgery.  I'm a guy with a relatively short haircut and the shaved strip was covered with newly-grown hair within a few weeks.  By the time I had my first post-op haircut it was barely noticeable - so you probably won't need to adopt a new hairstyle. 

Jim

[FlyersFan68]

I'm sure Jefferson has performed tons of AN surgeries but I'm sure most of them were textbook. If you have facial numbness now then odds are your tumor is more involved with your facial nerve. A radiated tumor on the facial nerve will require only the best. Give House a call. Hear what they have to say!

[JAndrews]

If you are able I would definitely consult with House. My tumor was a cpa meningioma (same spot as an acoustic neuroma). Another great surgeon who specializes in meninigioma's is Keith Black. He is in California also. He removes AN's also. I know a few people who have had excellent results with him. If you can, because you have multiple issues..see Keith Black. Good Luck to you!

[Suu]

G'day Madison

When is your surgery taking place?

The reason your doc may have said to expect facial droop might be because the tumour is under the nerve or the nerve is compromised in some way.  Do you know the position of the AN?

It could also be that the meningioma is the concern for your doctor.  I'm not a medical person sorry but I look things up that I don't understand and I ask a lot of questions of my doctors.

My facial nerve was stretched over the middle of my 4cm AN and it didn't 'bounce back' as the surgeon hoped.  I've gone through a 'couple or more' surgeries and now have my smile back but as with any operation there are risks.

My doctor asked me not to cut my hair as it was easier to pin back away from my ear and only a minimal amount needed to be shaved which was totally unnoticable.

I had occupational therapy to get me back on my feet.  I'm unsure what sort they give over in your country but my therapy wasn't enough so I did go to a private physiotherapist to work on my balance issues.

The other great members here have given good advice as usual and maybe a doctor with a better bedside manner, who is willing to listen to your concerns would be a good idea.

If I can answer any questions please ask.  Everyone is different and we all handle this trip in different ways but remember that we're all here for you and our prayers and hugs are completely free. 

Suu xxoo

[Tumbleweed]

Hi, Madison:

You've gotten some great advice from other people already, so I'll simply add a few things not yet mentioned:
1. Dr. Derald E. Brackmann (neurosurgeon at House Ear Institute) will review your MRIs and other test results for free and tell you his recommendation by phone. As his expert opinion will cost you nothing, I urge you to take advantage of it. A second opinion is always a good idea.
2. With all of the neurosurgeons you consult, you should ask if they consider debulking the tumor instead of removing it completely. Debulking would be less traumatic for your facial nerve and might preserve its function. Jim had his tumor debulked and then irradiated. Perhaps this is a viable option for you, even though you already had an unsuccessful GK treatment.
3. I suggest you also consult Dr. Steven D. Chang; he is both a neurosurgeon and CK practitioner at Stanford University Medical Center (California), so he is eminently qualified to address the viability of both debulking and irradiating your tumor. Dr. Chang's email address is sdchang@stanford.edu. He will review your MRIs and other test results and give his recommendation to you by phone for free. Dr. Chang is one of the leading brain-tumor specialists in the world, so you shouldn't pass up the opportunity to get his free recommendation.

Best wishes,
TW

[mk]

Just a few notes/clarifications:

The facial nerve is almost always involved with acoustic neuromas, as it runs parallel to the vestibulocochlear (aka "acoustic") nerve inside the internal auditory canal (unless we are talking about tiny tumors). Numbness is caused when the tumor (or the radiation treatment) affects the fifth nerve (trigeminal).
The larger the tumor, the more stretched and thinned out the facial nerve becomes - additional injury because of radiation does not help things of course.
That's why it is very important to discuss what is the surgeon's plan for facial nerve preservation. Debulking that TW mentioned is a good option, but my personal experience based on many consultations is that neurosurgeons won't recommend it in the case of an already radiated tumor, because it would require additional radiation treatment. Leaving a tiny "rind" of the tumor behind is the most common technique. Constant monitoring and stimulation of the nerve are done nowadays. My neurosurgeon also prescribes an antibiotic, which he considers helps the facial nerve withstand injury. These techniques can be very successful in the hands of experienced neurosurgeons. My facial nerve was wrapped around the tumor in the worst possible way (instead of running "below" the tumor, it was tangled in such a way that was running above it), but still, and in spite of previous GK, I preserved full facial function.

TW provided some great suggestions of doctor't that you can consult with, so that you can get their perspectives regarding growth, potential for complications etc.

Marianna