Just was diagnosed with Acoustic Neuroma yesterday...need friends!

[MaryBKAriz]

Thank you Robyn! I feel good about Barrows, haven't met the Dr but he is Chief of the AN department there. I also have an appointment in May with a second Dr.

I hope your son is doing okay and the surgery went well.

Mary

[richard]

Mary

I also live in the Phoenix area, Ahwatukee actually.
I just had my one year post op MRI and everything was negative ( no regrowth and no new growth).
I had about a 1cm left side removed retro sigmoid at Barrow neurological by Daspit and Spetzler January of 07.
If I had to do it all again, I would do nothing different.  But of coarse every situation is unique and you have to make the best call for your situation.

Richard

[robynabc]

Good for you.  I am sure things will be just great for you.  Really,  having a small AN gives you lots of options.  It will be much easier for you.  

Eric is doing very well.  We are approching one year from diagnosis and surgery.  Diagnosis was first of May.     5 days after his 18th birthday,  and surgery was June 27, 2008.  Will remember that day for the rest of my life.  You will be fine.  Hon.  

Robyn

[satman]

Hi Mary,I used to live Mesa and my mom still lives in Gilbert.
Please keep in mind that reading posts can  be scary,but eveybody seems to have different turnouts,chances are your days as a postie
will be on the better side of things,no matter the outcome you have found a great place/people in this forum,USE IT.
Keep up the great attitude it will come in quite handy,no need to worry about things,it's out of your hands.
I have a feeling that your outcome is going to be on the positive side of things. please keep us updated,sending prayers and best wishes from Dallas.

[fbarbera]

Hi Mary,
I think you've gotten some really great advice here -- take your time, speak to as many doctors as it takes until you feel completely confident in your decision.  I had CK for a much larger AN (about 2.6 cm) in August '07.  I am more than happy to share my experience with you any time.  But for now I will tell you -- you are going to be fine! 
Please email any time.
Best wishes,
Francesco

[jlamborn]

Hi Mary, and welcome.  You'll find a lot of great comfort and info on this site.  My situation was similar to yours, first started noticing hearing loss right side, tinnirus increasing, and finally the balance problems.  My size was 13mm.  Symptoms started in early 2007 and took until November to finally a correct diagnosis from an MRI with contrast.  By that time, my hearing that was left wasn't really usable, but my balance is what made me have the surgery last December.  I had gotten to the point where I couldn't work or drive.  I had trans-lab since the remaining hearing wasn't usable, I wanted the thing out, and I wanted the least risk of facial problems afterward (never had any facial symtoms pre-op).  My surgery went well, some facial weakness (just from the minimal stretching of the nerve during the removal) immediately after the surgery that was mostly gone 6 months after the surgery.
 
The tinnitus remains, but you can learn to tune most of it out just by getting your mind on something else.  Single sided deafness hasn't been too bad; I got a hearing aid for my left ear (it has partial hearing loss from a car accident about 3 years ago) and added the bi-cros system (basically wear a hearing aid on the right side, too, but it's basically just a microphone that transmits over to a receiver attached to the left ear's aid.  I've discovered all sorts of gizmos that you can get that transmit directly to the t-coil in the hearing aid (my home tv, telephone, ipod, laptop).  My motto is, if I'm going to be partially deaf, I'm gonna have toys!

I've had my 1 year post-op MRI and all is well so far; they still believe they got it all.

These are truly wonderful people and will help you through this.  I couldn't have gotten through it without them.  Their knowledge and experience is amazing whether you seek surgery, radiation, or just watch and wait. 

[Jim Scott]

Hi, Mary:

Welcome to the 'club' that nobody really wants to be in.   

I'm on the opposite side of the country and can't suggest any doctors or facilities in your area but as you see, this site has a very diverse membership in terms of geographic location so you'll see plenty of other Arizonians posting. 

Your AN, for all the trouble it causes, is relatively tiny - which is the good news.  You have options.  I won't bother listing them all as you'll be learning all about them in the weeks to come, especially if you continue your own research.  While you don't need to rush into a decision - and I hope you don't - you'll want to settle this in your mind as to what doctor and treatment option you'll choose.  That, alone, tends to give you a feeling of control and some peace of mind.  Once you come to a treatment decision, the gang here can offer their stories, suggestions and advice based on your specific treatment option.  I had surgery ('retrosigmoid approach') then radiation (FSR).  This was done mostly to spare nerves which are sometimes damaged when surgeons attempt to peel off the sticky AN material from delicate and vulnerable facial/cranial nerves.  It was highly successful, in my case. 

Whatever you decide, Mary, you'll always find friends here and a level of empathy you won't usually find elsewhere.  We've' been there'.  I look forward to seeing your posts and wish you much success as you begin your 'AN journey'.  Feel free to call on us if you need us.   

Jim    

[MaryBKAriz]

Wow Jim, (and WOW ANA )

Thank you for the encouraging email. I have since learned my options 1. wait, 2. surgery 3. Cyber knife 4. Gamma knife the team from Barrow met today about my case and concurred with Dr. Daspit's list. Since I just learned about this Monday, I am taking my time, but I hadn't thought about the 2 prong approach, wait AND choose what treatment I plan if and when I do it. I can see that could give a level of peace to the wait option. That has sounded NOT good to me, I am not that personality but I do see why I may want to seriously consider this option. Of the other 3 options I have no idea about which way I would choose right now.

My husband & I are getting away in the RV for 4 days over our 40th engagement anniversary which will be a great respite from a hard week. I have 2 non-family BEST friends here, one has seriously metestisized melanoma that went into the brain and she had the Gamma knife here. Another best friend has asses in her head and neck and will have a biopsy soon. I feel lucky not to have a malignancy but I am worried sick about my friends. I will persevere through my challenges and I know the ANA sight has made this so much easier. I keep thinking I should cry, but I just simply haven't felt like it. I really feel some of the worst times in my life I figured out why I endured them afterwrds and wouldn't trade them in the long run. Since I am 59, I have seen my share. I just know with the support I am getting I am very blessed.

Thank you EVERYONE who has given support!!!!!! So many have given so many great insights. I hope when I have gotten further down the path I can pass it forward as well as all have done here.

Happy weekend.

Mary

[robynabc]

Another best friend has asses in her head and neck and will have a biopsy soon.

Hi Mary,

You go have a great time and forget about this as much as you can.  Believe me you have to have breaks from this.  Happy 40th.

The other thing is, your friend has asses in her head?  was it masses?  Forgive me I sort of laughed at that. I really love typos  I do them all the time.  I was picturing asses in a head. 

 I am very sorry about your other friend. 

I hope you have a great time this weekend. 

Peace.

Robyn

[noodlenoggin]

Hi, My name is Linda. I was diagnosed with an acoustic neuroma nearly 3 yr. ago when I suddenly felt a fullness and discovered a total lack of hearing in my right ear. To make a long story short, the tumor was watched for 8 mth., at which point I was told it was growing and needed to be removed. I did my research and discovered I was a candidate for Gamma Knife. I had it done last August and went for my follow up MRI two weeks ago. The tumor has a hole through the center, which means in all likelyhood it bwill eventually collapse and shrink. I have yet to talk to or meet anyone who has this type of tumor and want to share my story.

[MaryBKAriz]

Hi Linda,

It is good to hear that the GK was successful. I am going through so many thoughts as I know you were. Are you glad you waited those 8 months? Did you have the option of CK? If so why did you chose GK if you don't mind me asking.

Best of health to you!

Mary

[ErinLeigh]

Hi Mary, I am in Arizona as well, Phoenix to be exact. I was just diagnosed last week. I am so scared and overwhelmed. I am 31 and I feel like my life is on hold right now. My doctor is supposed to be referring me to a neurosurgeon this week. Mine is small less than 1mm, so I do know that have options.

Let's stay in touch and compare notes!

Thanks to everyone who posts on these boards, the comfort they bring is amazing.

[jas1432]

Hello,
 I am married to a man recently diagnosed with an AC. 2.7 I believe is the size. Saw Dr at Mass Eye & Ear who believes watch & wait is best due to AN location. My husband has also suffered a stroke and is left with partial blindness and 2 blood clots in his head for which he is closley monitored on Coumadin. My concern is of bleeds. What are bleeds? What bleeds? and would coumadin enhance those bleeds. I am very frightened and my husband doesnt care to talk about these things (probably because he knows how much I worry about him) Can anyone help me with my concerns?

[4cm in Pacific Northwest]

Mary,

In point

•   The vast majority of AN tumors are benign.
•   The vast majority of AN tumors are slow growing.
•   Treatment of an AN tumor requires a skilled and reputable surgical team (even for radiation) with MUCH experience.
   
Remember
•   Chances are you do NOT have cancer.
•   You DO have time to do research.
•   Your tumor is small so you have MANY options available to you.
•   You want only an excellent surgeon with a good track record- and this may or may not require you to go out-of-state. Once you have narrowed your surgical “teamâ€? choices down - do a thorough background check on each surgeon. (If you choose microsurgery this would be a “neurotologist and neurosurgeonâ€? team.) All malpractice reports will appear here. www.healthgrades.com.

If you do choose to go out-of-state you need to ask the surgical team what sort of post treatment support they will offer (i.e. “do they have “experienced� colleagues, geographically close to you, that can assist you if you have any follow-up complications back home?�)

Every AN case is very unique and different. Ironically some people with massively large tumors can show no symptoms and people with tiny tumors can have all sort of symptoms with balance, hearing loss etc. Each tumor is unique in its location, size, and age and existing health state of the patient. Many people who have had success with their treatment move forward and leave their AN stories behind- others find much support here. Do not read everything on this site and think that the symptoms some describe- you too will have – post treatment… However be aware that there are residual effects with various treatments that some patient experience…

You DO have time to research, make informed choices and to prepare yourself. I advise working now on building on a good support system, at home, that can care for you and offer support- after treatment. Try to do all the right things to have yourself fit and healthy prior to your treatment as this will increase you chances of successful recovery if you have good exercise, dietary and lifestyle habits- ahead of time.

Do not let any surgeon pressure you into making a quick decision. You do have time to learn more and to make good choices without pressure. Your tumor is considered small and you have found this excellent discussion forum and resources website early on.

I interviewed 9 surgeons- all had a different take in my case as to what I should do. I chose the one who appeared to have the most objective perspective, experience and understanding of all treatment options and had an excellent record (with no malpractice suits.) This involved time, research, travel and …yes spending some money during the decision making process.



Keep moving forward.

4

[Cheryl R]

Hello. I am sorry to hear of your husband having to find the AN along with his stroke history.       Srokes are caused by either a blood clot obstructing a blood vessel or a broken blood vessel which can then be considered a bleed.     I am assuming he is on the Coumadin to keep more clots from forming.     People are also put on Coumadin if they have a heart condition called atrial fibrillation which can send clots from the heart to the brain.           Coumadin doses has to be watched so it does not cause the blood to be too thin.     There is an optimal range where it is the most therapeutic.       As long he is being monitored, I do not think he is at great risk for a bleed.   Is this what he has been told?              He would not have even been started on the blood thinner if he showed bleeding.     A CT scan shows this.                            Any treatment for the AN would require him to be off the Coumadin for a period of time prior to treatment.
   I don't know if this fully answered your question as you may need to ask a dr for more details about his exact situitation.                           
           Good luck to you both,                   Cheryl R