Just Diagnosed and not sure what direction to take

[Suzy]

I have just been evaluated by a Doctor at Johns Hopkins for an 8mm AN.  I learned that this is a small turmor and I have some options at this time. I am having a hard time making a decision what to do.   If I have a sub-occipital surgery, I have a better than 60% chance to keep my hearing.  If I wait, I could beat the odds because the tumor may not grow or take several years before it is alot bigger.  If it does grow, my chances for hearing decreases and the tumor may be harder to remove.  Because this tumor is benign, my doctor does not recommend radiation of any kind.   I do have very bad headaches almost daily but my headaches may not be related to the tumor.  The headaches are above my left ear at times but mostly on the top of my head and the back of my head.  I do have some slight ringing in my ear but that doesn't bother me.  Does anyone have any advise they can share with me.

[Battyp]

Hi Suzy and welcome!
First off 8MM?  that is small...why no radiosurgery? 
I was told that AN's do not cause headaches which is bull!  I had such horrid ones the year before my diagnosis.  I was started on decadron (nasty drug but a big help) two weeks before my surgery and it helped relieve the headaches.  I suffered from migraines for years and assumed it was migraines I had but I think it was more of a pressure in my head due to tumor placement.

Where are you located?  You definitely want to find someone who's treated hundreds if not thousands of these types of tumors.  Most doctors see about 30 in their entire practice throughout their lifetime.  I presented with tinnitus first progressed to balance issues but I did take the fast track. 

If you wait until you lose hearing for treatment you won't retain it.  I lost serviceable hearing before surgery and have maintained some (I actually got some back about 6 mos after surgery but not servicable hearing) the rule of thumb is what you have going in can be saved but they can bring  back what is lost. 

Best of luck to you...and anyone on here would be willing to help you with any questions you have.  Welcome again to the best exclusive club on the net! 
Michelle

[Suzy]

Michelle,

Thank you for the info.  My symptoms sound very much like yours.  I have had headaches for years but the doctor thinks it might not be related to the AN because they are on the top and back of my neck.  I live in MD so I saw a recommended doctor at Johns Hopkins.  I understand that this is one of the best hospitals in the country.  I was surprised that this doctor doesn't recommend radiosurgery.....especially because there is a Johns Hopkins website that specifically states radiosurgery is done on AN's.  I think I am going to meet with that department also.  Did you have radiosurgery?  Where were your headaches?  Do you still have any headaches? 

Sue

[Larry]

Suzy,

Welcome. I concur with Michelle and would add a bit.

I had middle fossa surgery almost 4 years ago now to remove a small AN. I was a fool to have the op. The only symptom I had was a loss of hearing. Anyway, post op, the growth has re-grown. I have had debilitating headaches for 4 years now. Sometimes its that bad that tears come to my eyes and whilst its not a bloke thing to cry, I can assure you, I have a very high pain threshhold, and they get really bad. The sub approach is similar in theoretical outcome to middle fossa. I did lose a bit more of my hearing as well and have chronic tinnitus.

Following research and the fanbloodytastic (oz slang) support and views from the posters on this site, I have learned that if the growth is small enough (like yours) then a watch and wait scenario is a very real option. Just have regular MRI's to monitor.

As for losing say 60% of your hearing from surgery, what they don't tell you is that sounds become muffled and you might have 30 or 40% of your hearing left but you can't make words out very well. better than nothing but still sub standard.

radiation treatment is a great option. there are many posts on the subject here but your two main choices are Gammaknife or Cyberknife. The odds for the radiation treatment going malignant is very low - significantly lower than major complications or death on the op table.

The reason your doc didn't like radiation treatment as an option is because he is a surgeon and doesn't want to miss out on the big pay paypacket that one of these ops gives him - crude but true comment.

Do your research and other posters will provide you with contacts. You may want top state where you live.


Laz

[Road Trip Dale]

I concur with Laz on this one.  Wait and see with a AN at 8mm.  Surgery is a very serious step with no guarantees as to the eventual side effects.  Rule of thumb I was given was surgery between 1cm and 2cm may be able to retain current hearing and less of a problem for facial problems.  Above 2cm you are getting into the area of potential serious side effects, but also in the area of brain stem problems.

I had a 1.75cm AN and chose Translab and have been really happy with the outcome.  I'm stone deaf in my right ear, but I was practically deaf there anywhere so no big loss.  I have very little facial numbness, but I had it before anyway, so no big deal.  Weigh your options carefully, do your research, and then decide.  Don't let a doctor talk you into anything.  At 8mm you have time to really make an informed decision.  I think I chose correctly for me, but as you've discovered on this site others were not so lucky.

Good Luck and keep everyone here informed.  We are great at giving our opinions

Dale

[Captain Deb]

Suzy,
Sounds like you have migraines if they are one-sided and occur in the neck, side and top of the head. I have the same scenario as Laz--severe debilitating headaches post-op. I spent the better part of 2 1/2 years in bed and unable to work. Mine have gotten better, but I get a 3 day whopper about every 3 weeks. My neurologist thinks that the surgery kicked my already-existing and  somewhat mild migraine mechanism into overdrive.  I encourage ANYONE who already has mild to moderate migraines and a relatively small tumor to seriously consider the radiosurgery route.
Capt Deb

[Danny2006]

HI Suzy

      I Have only known about my AN since Feb 06, and I can only give you advice as I see it. My An is small also, at least it was in Feb., it is 8mmx10mm. I considered Gamma Knife and wait and watch; however, I have decided to have surgery. I am 40 and I don’t think I can deal with the thought of the AN being in my head. I understand that Gamma Knife could stop growth, maybe forever, maybe not. There have not been enough long term studies to satisfy me. I also understand that they have reduced the doses of radiation used recently to try to cut back on side effects, such as hearing loss, facial nerve damage etc. Since they are the same potential side effects as surgery, I don’t see the great benefits. Except of course they usually happen over time, and not immediately after procedure as in surgery. You really need to research GK for yourself. I also believe that there is a better chance of removing AN with fewer side effects if it is small; therefore, I am scheduled to have the middle fossa approach at House Ear Clinic in L.A. on 2June06. I have very little hearing loss in AN ear. The only symptom I really have is vertigo, (sometimes bad) but I could deal with that. I just really want this thing out of my head so I can start on recovery.

     I hope this helps, but ultimately you have to make your own decision. Just be confident in your decision, any your docs...I am///
Wishing you the best
Danny

[Sue]

Hi Suzy,

From one Sue to another, let me say this about your question on treatment - you have basically three choices...wait (but you can only wait so long before you need to choose one of the other two choices), surgery or radiosurgery. I had Gamma Knife on 4/18/06. In my case, my doctor highly recommended Gamma Knife for me. My tumor (Jeez, I hate that word!) is 2 CM and quite a bit bigger than yours.  My doctor said, "Microsurgery is a Very Big Deal!"  There are a lot of risks.  But, I am 60 years old (Jeez, I hate those words!!) and I have diet controlled diabetes, so I'm sure the doctors looked at my risk factors for brain surgery, and said "Whoa, NOT opening up her head!"  If radiosurgery can kill that sucker and leave everything else in tact, then this is a very viable option for many people. I have no psycological problems knowing that an unwanted guest is in my auditory ear canal.  I figure the dumb thing has been there for 15 to 20 years without my knowledge and so why want the damn spot out now?  As long as it's dead, then I have no problem with it sitting there. But other people don't feel that way.  Your insurance company will love radiosurgery because it's much cheaper than brain surgery. Whatever you and your medical team decide, good luck to you and know that there are many people on this site who are ready and willing to help you with your questions and to give you a balanced look at all your options.  They are awesome.

Sue

[Larry]

Suzy,

Re your headaches, I previously forgot to mention that a poster here - Janet - is currently undergoing a botox trial and she reckons that she is definitley getting the botox and not placebo. She also indicated that it seems to be helping, email me and i will pass on your details to her so you can liaise directly.

cheers



Larry

[Suzy]

WOW!  You have all given me alot to think about.  This is all still so confusing and exhausting.....and unbelievable! There is so much research to do.  I thought if doctors worked in a team and there were all types of doctors on the team, then they could agree on the best alternative for me.  I wish I was told exactly what I need to do.  I am reading so many pros and cons of each treatment method.  Even when I decide on my treatment, then I need to decide what hospital to go to.  Sounds like most folks go to the House Ear Clinic but I live on the East Coast so follow up visits would be costly and wouldn't be to convenient.  One thing for sure, I am really glad there is this support group.  This is so new to me.  I think I need to take a break from thinking about all this for a few days. 

Thank you all for sharing information with me and for all your good wishes. 

Suzy

P.S.  Guess there isn't a pill that can dissolve this yet huh?

[targa72e]

Hi Suzy,

One of the good things about this list is that almost everyone starts at the same place, you are not alone. For some the tumor size will limit the options that are available(very large tumors), in some ways this makes things easier.
 I have a small tumor like yours. With small tumors all options are available. I think this makes the decision harder. There is no right answer, only what is right for you. I have found pub med  http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?DB=pubmed
A useful site to look at journal articles relating to AN’s. What you will find is that if you choose radiation (GK or CK) or surgery (from a top AN surgeon) that the chance of hearing preservation, and  facial nerve damage are about the same. The key is that with surgery you must pick a surgeon who does tons of AN surgeries of the type that you think best fits your situation and find the best. With radiation you have a better chance of getting the same care at multiple sites as you are dealing with a machine. I would not rush into any decision, your tumor is small, they tend to grow slow (1-2mm a year) and this gives you time to figure out what you want to do. June 1st is my one year since diagnosis, I have a follow up MRI next week. I can tell you that I have changed my mind almost weekly but, I think that I now at least know what factors are important to “MEâ€? in making my decision. Best of luck.

john 

[Suzy]

John,

Thanks for sending me the website.  It does have some good information. I have been reading AN articles for the past two weeks since I found out about this tumor.  I am 51 and have always been in good health, other than severe headaches.  I was totally shocked to learn about this.  I hope you have good news next week for your 1 year check up.  Please let me know how you do.

Take Care,
Suzy

[okiesandy]

Suzy,

If you want to know anything about CK and even GK go to cyberknifesupport.org I know some of the doctors do both kinds. I had treatment with Dr. Medbery. His direct email is on the site. Feel free to email him personally. Ask Phyl and she will tell you what a help he is when it comes to options. Unlike the surgeons, he is not opposed to surgery. I just gives you the facts.

I had surgery scheduled at HEI and canceled. I consulted a Neurosurgeon that does surgery, GK and CK. She said if it were her she would go with radiation either GK or CK.

As for wait and watch. I lost all hearing in my AN ear in 3 days. That can and does happen. Ask the doctors on the CK site to give the the hearing preservation rates.

I am 64 and before treatment I could not walk without staggering to the side. I also had headaches in the back and top of my head, now I don't. I am now 4 months post CK (painless) I am riding my horse again. Also, I have never missed a day of work because of the treatment except for the week off I took to pamper myself after treatment. I shopped and ate out after all three days of CK. One evening I had a little neasea, never again. I have had a few days of kind of flu like feelings that I am not sure was caused by the treatment.I have never been sick one day in my life and the AN really did a number on me. The decision to have treatment and which kind did an even bigger number on me. If I knew a year ago what I know now, I would be a year and four months out of treatment.

The decision is personal and the journey is rugged. Once the decision is made the nerves calm down. You are allowed to change your mind even at the last minute.

Blessings,

Sandy

[littlemissrory]

Hey Suzy,

I too had an 8mm AN.  I was diagnosed in April 2004 after spending several months falling over- I had no hearing loss but have had tinnitus for years.  Personally I opted for Retrosigmoid surgery immediately due to my profession as a ski coach.  I couldn't afford balance problems (although with any treatment there are no guarentees that they will go away) and had a time frame to get back on snow by the following November.  My surgery was in May 2004 by two surgeons in Seattle who have done hundreds of these and with whom I was very confident.  I can honestly say it was the best decision I could have made for myself, but remember everyone is different.  I was extremely fortunate- no hearing loss or damage to the facial nerve, and they were able to keep the balance nerve while still completely removing the tumor.  An MRI this past February shows all is well.  I was in very good shape and wanted to remain that going into surgery, I healed well and quickly.  I feel fortunate that it was caught early, that helped with a speedy recovery. 

I certainly can't help you decide what is best for you, but I did want to let you know that there are lots of people with really good outcomes out here.  I was surfing (not well) 2 months post surgery, and had a great season that year skiing.

Best of luck in the decision process, be confident with your choice- it did seem a bit less stressful after deciding what to do.

Rory

[Kilroy1976]

P.S.  Guess there isn't a pill that can dissolve this yet huh?

Suzy, do you really want to pop a pill that is strong enough to dissolve a brain tumor? Boy, that'd be a mammoth chemical indeed. I think I'd rather take my chances with the ray gun or the ice cream scoop.