MRI confirmed my AN today

[bpham]

Hi,

I'm belonging to this group officially now.  My MRI indicates that I have a 10x6mm "enhancing mass seen within the left internal auditory canal with some minimal extension into the region of the left cerebellopontine angle.  These findings could be consistent with an acoustic neuroma, however other etiologies including a meningioma should be considered".

Can you shed any more details on this report?

I'm currently searching for treatment options.  My ENT is referring me to the House Ear Inst, which he says is the best for this kind of thing.  However, he said that they're probably biased on the surgery option.  He event went there himself for his surgery.

I'm also trying to contact Dr. Chang at Standford based on the article on Cyberknife that Mark wrote.  I'm interested in his opinion also.

I was panicked and shocked at first hearing that I might have AN a week ago and could not sleep and was also very depressed, but now, I've accepted the fact and am just trying to sort out the best treatment options for me.

Any advise, suggestions, recommendations are appreciated since I'm at this point not so clear about what I need to do.

If I have questions, I will ask.

Thank you all who have spent time to talk to us.

[bpham]

I have two questions:

I have all of the symptoms of AN:  fullness, some balance issue, tinnitus, hearing loss, but this last one my ENT could not explain:  some facial ticks on the side of AN.  Now the tics seem to subside after 2 weeks.

I've read it on the internet that with a large AN, this could cause some facial nerve compression but in my case, I believe that 6x10mm is not that large.  Any reasonable explanation?  Could this be issue with the facial nerve being disturbed just because it is in the proximity?

Also, at night, when I sleep, if I turn my head on the left (AN) side, then there seems to be some pressure on that side and it is quite discomforting.  My ENT said that is normal with AN, is this true?

Thanks.

[Lorenzo]

HI bpham,

Sorry you had to join a club like this, but at least you found a great place to be. People are amazing here.

6x10mm is a small AN. I would say you have a bit of time to do some research on all this. Normally at that size it's not something that needs to be treated urgently at all. You do seem to have symptoms alright. We are all different, some have huge ones and few symptoms, others have tiny ones and a lot of trouble. They are probably is caused by the An disturbing your nerves. Those symptoms will probably settle after a while. But, as I said, we're all different and there is no guarantee on how your AN will affect you.

I don't have the face thing when sleeping, never did. Probabl to do with your facial nerve?

Look into your options and choose the one you feel comfortable with. Certainly going for House and Ear sounds like a good option, as much as Stanford and Dr Chang. I had CK with him and I couldn't be happier. Dr Chang is also one of those neurosurgeons that does both, surgery and radiosurgery, so he will be a good candidate to talk to. I always found him very approachable and forthcoming with information.

Good luck with your search.

All the best. Ciao, Lorenzo

[Mark]

Here's my non doctor two cents on the symptoms you describe:

I've read it on the internet that with a large AN, this could cause some facial nerve compression but in my case, I believe that 6x10mm is not that large.  Any reasonable explanation?  Could this be issue with the facial nerve being disturbed just because it is in the proximity?

It could be some temporary impact related to subtle movements with the AN as it changes in the IAC, but as Lorenzo pointed out it would be highly unlikely that the facial nerve would be reacting to that small of an AN at this stage. Typically, people don't start to detect issues with facial nerve function until the AN has grown significantly larger and stretched the facial nerve. Everybody is different but I would assume it is a transitory issue at this point.

Also, at night, when I sleep, if I turn my head on the left (AN) side, then there seems to be some pressure on that side and it is quite discomforting.  My ENT said that is normal with AN, is this true?

like Lorenzo, I never had that symptom with my AN and having watched posts on this board for 6 years I'm pretty sure I've not  seen that complaint very often , or ever for that matter. The AN is in the IAC and , in your case, probably just starting to extend into the cerebellpontine angle. It is no where near the surface of the side of the face and I can't imagine how it would cause discomfort by lying on that side. I learn new stuff all the time, so maybe there is something different in your situation, but I would disagree with your ENT that it is normal for people with AN's

but this last one my ENT could not explain:  some facial ticks on the side of AN.  Now the tics seem to subside after 2 weeks.

I think when all of us are diagnosed with this thing we become very hypersensitized to everything on that side of our head and every twitch, pain or sensation is assigned to the AN. I know I was that way and many people I've talked to agree with that premise. You have a lot on your mind right now after getting told you have an AN and trying to wrestle with all the emotions that go with that. I would not rule out simple stress as a factor for nervous tics or twitches at this point.

Just my perspective

Mark

[sgerrard]

Hi bpham,

Sounds like a typical AN to me, the radiologists always cover all the bases in their MRI reports. It is good that they found it while it is still small. You will learn to appreciate that it is acting up now, so it gets detected now, rather than growing without symptoms and being a bigger problem later.

House Ear for surgery, Stanford for CK radiation, you can't do better than those for choices. At 6x10 mm, radiation should be high on the list, in my amateur opinion.

Symptoms? All sorts of little odd ones seem to come and go. There will be some swelling reactions to the presence of the intruder, and that can tickle all sorts of nerve reactions. A tic that lasts only two weeks is just nerve irritation, I would think. On bad stressful days, my whole head starts feeling weird, like my sinuses are squeezing or something. As Mark and Lorenzo said, it is unlikely there is any actual facial nerve compression.

One other type of test you might ask your ENT about is vestibular testing, including nerve response tests and eye movement tests. These can help determine the condition of your hearing and balance nerves, which is useful to know when evaluating treatment options.

So try to relax, you'll get used to the odd symptoms after a while. Look into the treatment choices, including which type, and where to have it. In time, you will find the right choice for you.

Steve

[FlyersFan68]

Hello bpham,
   I would love to say that these pains are not related but I just cannot see how they are not related (any of them) in my opinion. If it was stress related then wouldn't you have pains elsewhere too. It's just the nature of the beast. However, who can say anything for sure. I had plenty of pains especially inside the ear prior to treatment. The ear pain and fullness are gone. However, I did completely lose my already damaged hearing on that side. One centimeter is entering the medium stage. It's small but these tumors grow in a bad spot so size cannot predict your damage or discomfort. As far as treatment, that's your decision. A difficult one too because you have options. Chang & Brackman are the best in their field but you'll probably get stuck somewhere between the control vs. removal debate or the & long term vs. immediate risk debate. One decision will eventually come around. I personally wouldn't choose radiation because it's quick or because some suggest it could be repeated. I wouldn't choose surgery because everyone thinks you should or because you might not need as many mri's in the future. We can only hope to choose the best long-term solution for our own well being. Best Of Luck! 

[Larry]

Hi bpham,

Sorry but welcome to the club. Agree with other posters in that you do have time but note that whilst you wait and watch (which is what I am doing) when you decide on a course of action, you will be very unlikely to improve your hearing from that point on. Any hearing degradation will most likely be permanent. But you need to review the radiation treatment threads.

Read, listen, absorb the info as waiting, surgery or radiation treatment all have their benefits and negatives so carefully make your decision.

Laz

[Larry]

whoops, forgot to add that the twitching - could be your nervousness or lack of sleep. Sometimes when I am over tired, my eye twitches a bit. I used to work for a guy who was very tense and his eye twitched at meetings. Hopefully it's unrelated.

laz

[Sheryl]

Also, be aware that the other possibility (meningioma) is also a benign process and usually very slow growing.  Sounds like you will be in good hands with the docs you are mentioning.
Good luck,
Sheryl

[bpham]

I'd just like to thank that you'll all a wonderful group of people taking time out to answer questions like mine and others.

Even though I've not talked to any specialists yet (my ENT dr. is scheduling an appt with HEI and I'm communicating with Dr. Chang at Stanford), I'm thinking about the 2 options all the times.  Should I do the surgery or the CK...

I hope after talking to both, the answers will become clear.

I can see that Lorenzo indicated that he was treated with CK by Dr. Chang and so was Mark.  Both are happy.  Lorenzo, is there a story that you have written about your experience somewhere such as Mark's that I can read?  If not, can you give me details of your experience?

Questions:

1.  Also, when I talk to the Dr. at the HEI, what kinds of questions should I ask?  Also about the CK compared to, I guess, probably their recommended way which is surgery?

2.  May be this is too early to ask, but why would one choose CK over surgery and vice versa?  Please give me your reasons why you choose one over other.

3.  What are the success rates of CK compared to surgery and how long has CK been around?  where can I find such information?

4.  In my case, the AN seems to cause some ache inside, how can CK eradicate the pain and problem with fullness since the tumor is still there and may still interfere with the other things in proximity?

Sorry some of these questions may be stupid and if you know a source where I can find these answers please point me to them.

I talked to a few people already with AN and all of them had surgery done, none that I know had CK.  This could be because they had them done few years ago when CK was not popular.  However, all of them seem to be doing OK.  In fact, my manager had it done 9 years ago at HEI and I talked to him today.  He went over his experiences.  He said that right after he had the surgery, for 2 days his left face was numbed but was OK after a few days.  He could not walk straight for 2 weeks and needed a walker to help him around the house.  For about 1 year, he had some balance issue but only during bowling.  But now, he is perfectly normal, except the tinnitus has never gone away which he is used to anyway and he used that ear when his wife complained something to him and it is useful, he said (he was joking of course  ).

Anyway, thanks for all those who has replied and those who will reply to my questions.

I'll keep you all posted on my journey and will of course ask questions as I go along.

[Lorenzo]

Hi Mark, I've sent you a personal message with the URL for my blog where I gave an account of my CK experience and post CK story. Hope you'll find that useful.

In general specialists will tend to promote their preferred options, ie surgery or radiosurgery. But that's not always the case. Just keep an open mind, and make up your own mind as to how you feel about both options. You'll have to feel comfortable, and live with your choice.

As to why chose one over the other, I think we can all just tell you why we chose ourselves. I felt a lot more comfortable with it, simply put. I didn't feel comfortable with having surgery here, surgery anywhere else was not an option, radiosurgery sounded good, control rates were as good as any figure for surgery, didn't mind living with a dead lump in my brain, liked the better possibility of less physical side effects, and, I really liked the docs! But mainly, the idea of having somebody rooting around my brain with sharp metal tools did just not do it for me!  Especially on a monday morning, with possibly after a heavy weekend...

Some of the questions you have you could ask Dr Chang directly. Control rate at the time was quoted as 98-99%. CK had been around for 10-15years, I think. Again, ask them. A good place to find specific CK information and support is the cyberknife support group forum. Some docs are on that too and they are very involved and great for giving information. Ask there about the pains inside.

Hope all this helps. Ask as many questions as you can think of. Doctors should be forthcoming with the information. If they are not, well...

Keep in touch with us.

Ciao, Lorenzo

[sgerrard]

The cyberknife support group has info and a forum and links to several doctors, including Dr. Chang:
http://www.cyberknifesupport.org/

For some good data on surgery and radiation, mostly about gammaknife, the Pittsburg study is good:
http://www.acousticneuroma.neurosurgery.pitt.edu/index.html

What to ask HEI? About the approach they would use, probably middle fossa to preserve hearing, what are the risks, what do they predict would be the outcome.

Stanford has been doing CK since around 1994. Success in controlling growth is very high; success in preserving hearing is around 75%.

Although there are cases of excellent hearing preservation with surgery, the rate of hearing preservation is generally better with radiation, and the incidence of side effects is generally lower. It is sometimes hard to sort it all out, because the surgery success rates at HEI, for instance, are higher than the national average, and they have some cases with perfect outcomes.

Does the dead tumor still cause problems? Good question. It seems like the answer is no, at least after a year or so. Once it stops growing and diverting blood supply from nerves, and the post-radiation swelling has gone down, they seem to stop being a source of problems.

Why choose radiation? In my case, I first considered it because my ENT recommended I consider it. Since he does AN surgery himself, I took his advice seriously. He pointed out that even when the hearing nerve is preserved after surgery, sometimes the nerve will die within a year, since the surgery disrupts the blood supply to the nerve. It all depends on exactly where the tumor is and what it is attached to, something they can't really tell until they cut you open. For a small neuroma, with useful hearing worth preserving, radiation is a sensible choice.

Do some investigating, and see what HEI and Stanford have to say. Take enough time to understand the pros and cons of each, and gradually one option will start to sound right and feel right and make sense to you. Wait for it; it will come.

Steve

[ppearl214]

hi bpham  and welcome to the forums.  Another post-AN-CK patient here and doing great.  I was treated here on the East Coast with CK approx 16 mos ago and recent test results (hearing, MRI's, etc) all seem to indicate my AN's death.

Choosing a treatment protocol is so highly personal and everyone here is sharing a terrific wealth of info.  Mark and Lorenzo are spot on with what they have shared and the links that have been shared.  I had my personal reasons for choosing radio-surgery over microsurgery and also spoke/met with numerous neurosurgeons regarding my treatment options, including HEI.  You can read further CK info in the "Radiation/Radiosurgery" forum here on the website as many CK patients (regardless of where they had their treatment) have shared their CK experiences..... and many microsurgical patients in the "Microsurgery" forum.  I'm glad you found us here as there is so much info available. Sounds like you are researching thoroughly and becoming the best-informed patient you can be.

Again, welcome to the site.... it's good to see you here. We're here to help.

Phyl

[bpham]

even though I have posted a similar question at the other category, I'd like to see if this group here have any information on Dr. Steve Friedman at the House Ear Inst.  I've heard that he and Dr. Brackmann are the best there.

Any information is appreciated.

Thanks,

[pearchica]

Hey BPHam: sorry I haven't responded to you sooner- here are my answers to your questions

Questions:

Also, when I talk to the Dr. at the HEI, what kinds of questions should I ask?  Also about the CK compared to, I guess, probably their recommended way which is surgery?

I asked every question I could think of - the AN website has a list of questions, but I really talked to surgeons about facial nerve preservation, how long in surgery, what to expect post surgery, the possbility of CSF leaks (spinal fluid leaking through your nose, a complication from surgery that happens to 10% of patients- depending on procedure and usually right while you are at hospital).  I asked about meds used, I asked how long it would take me to recover- should I have a nurse at home- you name it I asked it.

2.  May be this is too early to ask, but why would one choose CK over surgery and vice versa?  Please give me your reasons why you choose one over other.
I chose CK as I really did not want surgery. My problem was I kept talking to surgeons rather than a surgeon who is trained in both radio and conventional surgery. The conventional surgeons were all very compelling but a bit pooh - pooh about radiation except the first one who would debulk the tumor and then treat the remainder with gamma knife to preserve my facial nerves.  All three surgical opinions told me hearing would be shot- except for last one who gave me a 5-10 % chance of hearing.  I chose CK as I got to preserve what hearing I had and no traditional surgery- I'm a chicken and I really was not looking forward to going under the knife.

3.  What are the success rates of CK compared to surgery and how long has CK been around?  where can I find such information?

Chang @ Stanford told me out of 600 AN's treated, he only thought maybe one failed. I confirmed for him that I had seen a posting on the website from a former patient who had CK and then had a regrowth and went to HEI to get the tumor removed. No names were mentioned obviously (and I couldn't remember the gals' name anyways, nor would Chang have revealed another patients name to me.) Chang did state that failure meant they didn't get all the cells and retreatment was an option.  He quoted a 98% success rate for getting all the cells the first time.

4.  In my case, the AN seems to cause some ache inside, how can CK eradicate the pain and problem with fullness since the tumor is still there and may still interfere with the other things in proximity?

I don't think CK can eradicate the fullness, I do notice fullness in my ear, but I have been taking congestion medication and I think some of the fullness is decreased due to sinus pressure.  My tinnitus is the same. I read in pubmed.org that 30% of tumors swell post CK, 30% shrink and the remainder stay the same size.  My throbbing along the jaw line only occurs when I am driving and I think it's because I clench my teeth... (stupid california drivers including me) 

Sorry some of these questions may be stupid and if you know a source where I can find these answers please point me to them.

Don't Apologize! No question of this nature is stupid- especially as you troll through so much information.  I went to pubmed.org, the cyber knife support board and then eveyrone in this group was super helpful.  The research is the hardest part. Once you get through it, things will become clearer althought it will probably take longer than what you would like. Take care of yourself!

Annie