My story so far and introduction

[targa72e]

HI,

I have been a lurker for about 3 months. I found out June 1st that I have a 4mm x 4mm AN on the right side (MRI with contrast confirmed). I went from no symptoms to brain tumor diagnosis in 12 days. I was quite shocked, I have had a very healthy life, I have never been to the hospital and only rarely even get a cold.
I am lucky to have a co-worker and good friend who’s wife is a ENT. With my initial symptoms of plugged ear and hearing loss my friends wife had me come in right away and I had a MRI the day after seeing her. I had 80DB loss with a 64% SRT and very mild tinnitus. I am in wait and watch mode with a follow up MRI scheduled in December. About a month after initial diagnosis my tinnitus got worse and then again about a month later it got louder again. I occasionally feel kind of weird, a little light headed which I did not have before but no problems with bad vertigo. My hearing was retested in early October and has gotten better up to 50DB loss and 68% SRT so good news. The last 3 weeks I have had a constant head ache on the right side, it starts about 1-2 hours after I get up and is at its worse in late afternoon. So I am one of those people who’s symptoms don’t match the size.
 My original plan was to wait until my tumor was closer to 10mm in size to do anything (the prognosis for good out comes is better below this size). I figured this could be several years away and my hearing was already shot (and below the 50/50 guidelines) so there was not much to lose. Now that my hearing has improved I am torn between waiting and doing something sooner to save the hearing I have. With symptoms getting worse every month (tinnitus and head aches) I am not very optimistic that my 6 month MRI will have good news.
I am also struggling with what form of treatment to pursue. I realize that the general outcome for surgery are skewed to the bad side, as by default larger more complicated tumors are treated with surgery. This makes it difficult to determine what the complication rate for surgery on small tumors really is.
Radiation looks attractive from the stand point of low rate of initial side effects and good short term tumor control rates. The down side is that there are no good long term studies
( I am 40 and plan on being around for a while, I don’t consider 5-10 years long term). I don’t want to find out 10+ years down the road that I am now likely to experience other complications worse than the AN.
So now that I have officially joined this elite club and made my introduction I will chime on more topics.

John

[Desilu]

Hi John, do your research before you make a decision. There are many great doctors out there, and loads of information in this forum. Many people have had radiation and are very happy with the results. I chose to have surgery because I didn't want something growing in my head that isn't supposed to be there. My tumor was small 5mm x 8mm and I had Middle Fossa approach. I am 3 months post surgery. My life has returned to normal (I went back to work after 8 weeks). I too am in my 40's and did not want to wait until I was older to try to recover from this type of surgery. I don't know where you are located but House Ear Clinic in L.A. will read your films and call you with their opinoin free of charge if you send them your films.  When you make a decision you must feel comfortable with your doctors. You have only one chance to do it right. I wish you the best, whichever way you go. If I can be of further help, please email me.  Ann

HEI
July 26, 2005
Dr. Brackmann & Dr. Hitselberger

[CC]

Hi John
I agree with Desilu that you should do heaps of research.  All of us become mini experts in the subject. In the end it's what you're most comfortable with that becomes the best treatment method for you.  Like you I'm in my 40s, have only ear fullness, minimal (ie only outside the speech range) hearing loss and excellent speech recognition.  At 1.8cm my tumor is larger.  But for me surgery meant guaranteed total hearing loss - something that I was not ready to accept.  So I've gone with cyberknife.  In fact, I had my first treatment today.  The way I look at it, the studies look good so far - 10 years into the future.  And given the advances in the past 10 years with both microsurgery and radiosurgery who knows what will be available for me in 10 years if I am one of the very small percentage whose tumors grow in the years after CK.  My doctor has had only one tumor grow after treating over 600 people with cyberknife.  They're good enough odds for me.  But, as I stressed earlier you have to go with the treatment you feel best with.  For me it was not having to have my head cut open and the ability to retain my current almost perfect hearing that made the decision to have CK a good one.  For you something else may be the reason. The best advice given to me was by someone on this site who said it was the quality of life post treatment that was most important to them.  That really rang true with me.  So happy researching.  If I can share any of my information with you or just be someone you bounce ideas and thoughts off please don't hesitate to contact me.  Really, you've made the best decision by finding this site.  The people here have been my lifeline!

Good luck
CC

[jw]

Hi, John.

I can't say "welcome to the club" since I'm not officially in the club yet.  However, it's nice to meet you.  It sounds like you have time to do your research, since your AN is small.  The idea of a follow-up MRI in December certainly sounds like a good idea.  It will give you a good idea of how much growth has occured in 6 months.  These are typically slow growing, so hopefully yours follows the "rule".

Best wishes in your research and treatment, whatever it may be.  There's tons of people here with just about every experience you could think of.  And, they're all very supportive and willing to help.

It seems like there are so many opinions and experiences with radiation and surgery.  Some are open to both, some just want one type and don't consider the other.  Some are totally against one type for their own reasons.  Do your research and make sure that it's something you feel comfortable with.  I'm also in my early 40s, and 10 years isn't too far down the road.  It seems like the older you get, the faster 10 years go by!

CC, I hope you're doing well after your CK treatment today!  All the best for your continued treatment and let's hope that it zaps the nasty little [censored]!

[CC]

Hey guys

Just returned from California and CK treatment.  Thanks for the well wishes.  Everything went brilliantly.  I feel fabulous and, other than sleeping 11 or 12 hours a night now, tinnitus has almost completely disappeared (very rare I'm told) and hearing a definitely better (altho wasn't awful in the first place).  All in all a great way to go!

CC

[SuzeAN]

Hi, Just to add in a bit here, I just turned 41 this summer and was diagnosed with 2.5cm AN; like everyone here I have done lots of research and this website has been a most helpful with leading me to lots of information.  I had my CK done the first week of October; and like others who have written I was concerned about maintaining my current quality of life, and avoiding the risks of surgery at this time.  This decision was what worked for me after some months of researching and talking to doctors.  I think since your's is so much smaller you have some time to your advantage to really dig in and get some good information.  Good luck.

Glad to hear you are doing well CC...you are so lucky about the tinnitus diminishing!  This month went by without incident I actually forgot that I had Cyberknife Oct 4,5,6....I have also added an enzyme supplement to my diet (Vitalzym) and I think that may have helped keep my energy level up, and I have started to exercise again. 

Suze

[prittdgoat]

I hate to put a damper on anything but I;m convinced that the longer you wait and the older you get, the longer and the worse recovery is.I had my surgery, 3mm by 5mm an, 11 months ago and I still can't walk right, talk right ,use my hand properly or even smile.  I found out about my tumor in oct 2004 and it was measured at 2mm by3mm and the doctor said i could wait until after christmas to have it removed.  He said they were real slow growers and I had nothing to worry about.  HA!  It grew a lot in 4 months!  I'm 50 now and I guess it takes more time to heal in older people.   

[sally]

This is my first posting.  I have an appointment tomorrow with a neurologist after a MRI showed I have an AN- AND to add
another twist confirmed that I also have MS.  I wasn't surprised with the MS diagnosis as I've had symptoms for years, mostly sensory and visual.  I have no idea the size or location of the AN.  So now I also have to deal with beginning some type of treatment to prevent the MS from progressing and also learning and deciding what to do about the AN.  I'm 51 years old and pretty scared by this whole thing.
Sally

[luv2teachsped]

Sally; So sorry to hear about your MS.  It has to be difficult dealing with not 1 but 2 diagnosis.  Although I had only my AN to deal with, I was going through a nasty divorce at the same time.  I guess the good part for me was I wasn't really worried about my tumor, I left that to God to deal with and I had to deal with all the nastiness of my divorce.  After 6 months, it's just really sinking in"hey, I had a brain tumor!".  Keep positive thoughts. Take Care, luv2teachsped

[Sheryl]

Sally - So sorry to hear about your multiple problems.  I, too, had a very full plate recently.  I have been a "wait and watch" patient for four years and have had hardly any growth in my benign schwannoma (rather than on the 8th cranial nerve - acoustic - it is on the 9th but very much like an AN).  Over the past year and a half while "waiting", I found out I had breast cancer - no relation at all to the brain thing.  I went through a lumpectomy, chemotherapy, and radiation.  Just before my last chemo treatment we found out my husband also had a brain tumor.  His was called a meningioma and because of its rapid growth (they are usually slow in development) and doubling in size in six months, he was urged to undergo surgery. He had wanted to go the radiation route but without having a definite pathology, which would mean a biopsy, no doctor would radiate it.  Having a biopsy on this type and place of tumor was almost the same as having it removed with surgery - the neurosurgeon had to do the same procedure.  All of his tumor was removed and found to be benign, but could grow back and now he is doing MRI's every year along with me - he says he likes to do things together after 38 years!!!  It certainly has been very trying and I always wondered how people made it through such traumatic events as we were always very healthy.  You somehow do manage with support from family, friends, and prayer.  My best wishes to you and please keep us informed.  Also, this is a great place for support too.
Sheryl

[okiesandy]

John,

I am going to chime in here. I was dx'd 4/05. Was told mine was small, around 1 cm and I could wait and watch. I am completely deaf in AN ear, imbalance and tinnitus. One thing I have learned is each one of these danged things behave differently. I lost hearing 3 days after the vertigo started. Tinnitus came two weeks later. The 6 weeks later I started losing hearing in the other ear. Dx's Autoimmune Inner Ear Disease. Now that hearing is back, however it means hearing tests every 6 weeks to 2 mos. to monitor. As for not growing. 6 mo. MRI shows 3 mm. Average growth is 2mm in a year. Was turned to to go to HEI by ins. co. now appealing again for a dollar amount they will pay. And will pay out of pocket for the rest. Plan B. which is becoming more appealing is CK. If anyone thinks there is any normal behavior with AN's they just haven't read the posts.

Research, ask questons, go with the gut feeling get the best doctor no matter what you do. Don't depend that it won't grow. You gotta do something about it sooner or later.

Good Luck,

Sandy

[annewttom]

John,
I agree with Desilu. I had a similar diagnosis, 6mm x 8mm 3 years ago @ age 48. Middle Fossa at House by the same fine doctors as Desilu. I went back to a physically and mentally demanding job three weeks after surgery, too soon, but doable. I've lost no quality of life whatsoever, in fact gained some greater perspective because of it. I had minimal side effects from loss of the balance nerve, but now after 3 years, those are nearly nonexistant.
  A note re: surgery vs radiation that is rarely brought up. Surgery ususally removes the balance nerve from the effected side, so the other can compensate instead of both struggling. There is recovery involved, but in the long run this is a guarantee of one symptom and possible future problem solved foreve.