Diagnosed with AN 03/05/2007......worried

[sharibari]

   I found this website on Wednesday just two nights after being diagnosed. I was doing alot of research on the symptoms treatment options etc.  I stumbled across this website and I realize that most people with super outcomes aren't always the ones to go online and talk about it as my doctor warned me about.  I have 3 kids and am unsure of the exact size he just said it is approximately the size of a pingpong ball to a golf ball. Not exactly knowing measurements or even thinking of asking him for measurements. I have had issues for quite some time, but was always told by my PCP that I had a plugged eustachian tube and to take sudafed and I would be fine.  Well needless to say.....it's not a plugged eustachian tube. I was pretty much told that I should have surgery due to my age and the size of my an. He felt this would be the best recovery and overall outcome. He said that I will lose complete hearing even though my hearing has come back to 50 decibals. He said that hearing could have been preserved if the an was smaller. I am already having facial numbness/tingling and pressure and fullness in my ear and lower head. Some occasional eye aches, unsure if related extreme lathargy and alot of head "cloudiness". I sometimes feel like I don't know what I'm doing or going to say. I lose my train of thought. I am glad I found this website, but I am just extremely angry and worried as the same day I found out my diagnosis, on my way out the door to my appointment to get my MRI results, I informed my employer that I needed to cut back my hours as I felt overworked and very "stressed". They told me that I couldn't and basically would replace me. I then found out that I had an AN and was extremely overwhelmed with the fact that my employer was now going to be replacing me, plus everything.. my kids, my recovery.... I know I just found out and I feel overwhelmed. But we really can't afford for me to be jobless right now either... Sorry for the sob story but I just wanted to vent.. Thanks for listening...Shari

[Palace]

Hi


You will get lots of support here.  My tumor is 22mm, the size of say a quarter.  If that gives you something to compare the golf ball, to.

Anyway, yes the knowledge is power and see the surgeon, radiologist, do your reading and ask all questions you want on the forum.

It is hard and I know what you mean about the facial numbness and tingling.  I have that also.  I did have CK but it's only been three months.  (no real change yet)  One thing that hit me hard when reading your symptoms, which I have all of the symptoms you mention except the one change, is the fullness seems less for me)  I do have water behind the eardrum now since Jan. 1st which is painful.  There isn't room in there with the tumor for the water, the doctor mentioned.  (ENT doc)

I'm typing this at midnight so, it might not make as much sense as, in the later morning.  I need to get back to bed.  I wanted to respond to you.

Hang in there and we will be there for you.  You will get through this and your health is the most important thing for you now.  Yes, you have children and take this one step at a time or it is over-whelming.  I don't know where you live or the type of work you do but, you will get there.

I'm supposed to get another MRI and audiologist test in three more months, then the cons back at Stanford, again.  It is a long road and you are now in our club.  We will help you.



Hugs,



Palace

[Derek]

Hi Shari...

So sorry that you too have been diagnosed with an acoustic neuroma but the good news is...it is benign and treatable...you will be OK!

Because it is a slow growing tumour there really is no need to panic and to be rushed into immediate treatment. If your AN is not over 3cm then in normal circumstances you do have treatment options available other than invasive surgery. I was diagnosed 5 years ago with a 2cm AN and I am still subject to the 'wait and watch' procedure. Acting upon my neuro's advice and subject to suitable annual MRI scan results, I will remain in 'wait and watch' mode until such time that I must decide upon an  ultimate treatment option which in my case will be non-invasive stereotactic radiosurgery. I suggest that you should  give this form of treatment your fullest consideration should you be considered a suitable for it.

Be sure that you carry out as much research into treatment options as you possibly can and you have already made a great start by accessing this amazing website where you will get loads of information, help and encouragement on your AN 'journey'.

 Remember above all else that your ultimate choice of treatment should be YOUR decision based upon your own thorough research and only the opinions of neuro experts who are specialists in dealing predominantly with acoustic neuromas and who have literally dealt with hundreds of such cases.

Best Regards

Derek

[Lorenzo]

HI Shari,

I would say that judging by the size of it, it sounds to me unlikely that radiosurgery would be an option. BUT, this said, make sure you talk to experts in the field, one for surgery and one for radiosurgery. Experience is the key in this, go for the most experienced people you can find. You'll find that most good specialists will look at your MRIs if you send them to them.

Surgery for above 3cm ANs seems to be the standard, and yes, loss of hearing on the affected side is the case. I would suggest you find out what the tumour size is, and read as much as you can bout this. This is a good place you have found, with kind people all willing to help. we all had our experiences, and no, not all of us had 'bad' outcomes. Some of us had it comparatively easy compared to others. Either way, this is not an easy thing to deal with, regardles of how good or uneventful the treatment and recovery were.

We're here to listen and glad to be a sounding board for you. Ask questions, somebody is bound to have an answer.

Keep us posted.

Lorenzo

[TP]

Hi Shari, I understand being upset with your initial misdiagnosis. A year before my surgery I had pain in my neck/arm thinking it was an injury due to martial arts, was treated by a chiropractor, pain didn't improve, saw a pain dr several months later, had a neck MRI but they didn't see the tumor on my brain stem which was pressing on my spinal cord, was put on Celebrex and then developed head aches and hearing loss. I thought it was due to Celebrex (found that bit of info out on a website) shared that with my pain Dr and he examined my ears and stared into my face and felt I needed a brain MRI (God bless him)  where they found the tumor, saw a neurosurgeon the next day and we talked about my situation.

Remember, AN is benign. Find a DR that you trust and feel comfortable with. If you don't feel comfortable with the DR that you saw recently, find another one. I too was worried about my work situation but once diagnosed I shared with my management team and they fully supported me. When I returned back to work I felt so much better.
 
The side affects are a pain at times but being alive and enjoying my family again is worth all that in the world!! Stay positive, pray and ask others to pray and help you.  

[BevM]

HI Shari:   I had Cyberknife treatment and the only days I missed work were the 3 days of treatment.  I hope you will check out the treatment options and consider all before making your decision.  As others have said, it is worth taking the time to fully research your options.

Best Wishes,

Bev

[Evan]

Hi Shari:

If you saw some of my other posts, I too was diagnosed on Thursday (Mar. with a 1.5cm x 1cm AN on my right side.  I had some of the same symptoms as you, but they only appeared within the last month and my ENT ordered an MRI right away.  Like you, I am scared, but the more I read and the more I am on this forum, the more I realize that while serious, it is something than can be dealt with and whether its surgery or radiation, we can all move on to lead relatively normal lives.  If loss of hearing in one ear is one of the more serious consequences, I can deal with it, if I have to.  I am going to start talking to doctors this week and while I know I do not have to rush into any procedure, once I make a decision, I want it over with.  Please

[Dantheman]

Hello Shari,

You and I had the same experience. A year prior to my diagnosis I was also taking decongestants for an eustachian tube blockage. Sudden deafness as I awoke one morning just prior to halloween put the Dr.'s  on the right track.

I just had trans lab surgery on Feb. 13. Like you I surfed the "net" and came to the conclusion that many people that have good outcomes after surgery stop posting in forums like this or stop updating their own websites. One thing that you will find in this forum from folks that still have some problems after recovery and something you should emmulate is their resillience, their fight. The fire in thier bellies that won't let them give up. Once you can be like that you will find some peace and the decisions that you will have to make will become clearer and come easier. It is still good to research as much as possible to prepare yourself for the worst. But you must also work, hope and pray for the best.

So far, one month out of surgery, my progress has been great. My facial fuction is 100%, my vertigo is mild (moderate if I'm tired) and I am taking walks to build stamina back. I'm on track and there is a great chance that you could have a very successful outcome as well. I'm early into my recovery and have a ways to go...but I remain positive and am prepared for a setback (God forbid) should it happen. Afterall, I wasn't perfect before my AN...and I'm still imperfect. Nothings changed.

My best advice to you is to learn as much as you can from the people in this forum and folks that have their own websites sharing their AN experience. Absorb all of it; The good, the bad and the ugly. Also know that everyones recovery is individual. You may have some of the issues during recovery that you've read about...or none.

If you have family and friends nearby that you can share your thoughts and feelings with, do so. A strong support group will help a great deal.

There is a poster on this site named Boppie and several  others that had  fantastic outcomes and are doing just about everything that she did before surgery. I'm sure that I will have some limitations in the future. I plan on doing all of the things that I have always done...I just might have to adapt and do them a little different.

God bless, and please post often...you have at least one support group right here.

Dan   

[momof2]

I'm so sorry to hear about your diagnoses.  I'm 10 months out from my surgery and doing well.  I also have children.  The best advice I can give is to do your research on the Drs.  Ask your Dr. how long they think the surgery will be.  My local Dr. told me it would take him an average of 11 hours for surgery.  I went with a Dr. with experence and it took only 5 hrs.  I just thought I wanted my brain open for the smallest amout of time possible.  I had a trans lab.  My hearing was already destroyed.  I kept telling my DR.  about my hearing and kept being told it was my sinuses.  After doing my research and talking to different DRs. I decided to go to the House Ear Clinic in LA.  I live in TN.  The Drs there will also let you send your scans to them and they will look at them and tell you what they think.  I went with Dr.  Friedman.  He will discuss your films over the phone.  Just do your research. I truly believe this web site can help make your decisions easier.  I hope and pray the best for you.  Lana   

[RED in Palacios]

Hello Shari,
I am genuinely sorry that you have an acoustic neuroma.  You will be in my prayers and in my thoughts daily as you deal with everything that is involved.
As I am sure you will continue to discover, your experience is shared by many of us.  In my case, I went to my local Dr. in early August of 06 thinking I was dealing with my usual allergies to cotton ginning season.  He thought so as well and treated me for fluid behind the drum.  Over the course of the next 2 months, my allergies were much improved but my ear was still "blocked".  I took my self to the nearest ENT practice I could find and after the Dr. there spent a litle time with me, he sent me for an MRI.  Found the AN which was 3.6mm by 9mm. Went from there to San Antonio to a Dr who was supposed to be among the best in this part of the country.  I was not impressed with him but am doing the wait and watch thing while I look for another specialist.  My next MRI is just about a month away.  Once we have those measurements to compare, I'l have a better idea of which way I want to go and how fast to do it.  Hopefully your treatment options will be succesful and no additional problems will arise. Please know you are not alone in this and that we are here for you in whatever way we can be.   

[carmen g]

Hi Shari,

I was just diagnosed also.   I guess we will be going through this together.  Your AN is a little larger than mine, so our treatments may be different.  Well, I just wanted to let you know that you are not alone.  Take care, Carmen

[pearchica]

Hey ShariBari: on behalf of all the gang here- welcome to Club AN. We hope your stay will be enjoyable. Okay, sarcasm aside, the first weeks by far are the most difficult. And yes, there are lots of patients who have positive outcomes with surgery: Jim Scott, IXTA comes to mind as well as our other buddies who have posted on your thread.  Also some of the newbies are doing really well post surgery.  All the doctors I spoke to warned me about the websites, that they were dominated by victims.. the more I think about that comment, the more angry I get. Although we have some people that are struggling to regain facial nerve movement in particular, this group is a fighting force to be reckoned with. I think the medical community forgets the "support" in patient support groups- they operate or zapp us but really don't get what it's like to be the recipient of such procedures.  My experience was if you really want radio-surgery (radiation) you have to go outside the normal ENT field to get it as the standard protocol is surgery. Having said that, surgery may be your only option, but at least talk to someone who is practicing both types of procedures- that way you really will get an unbiased view and you will be assured that you made the right desicion.  I'm sorry to hear about your employer ( perhaps you need to get a lawyer- people can't fire you for medical reasons - I'm in a family business so while my brothers are the experts in employer law, I know we can't do that - hell they would have fired me years ago for being the wacky kid sister if that's the case!).. Take care, it does get a bit easier the more you read over time- Annie PS(worse case you can get COBRA Insurance Coverage).

[sharibari]

Thanks for all the support. I really appreciate it. My office manager is trying to get me to go out on disability even though my Dr. nor I have thought about it. I don't know what is up with her. Well this too shall pass... By the way being a newbie to this diagnosis and terminology, what is translab and what is CK and GK??? is translab the same as cranial base surgery?? Thanks for everyone's time in posting back. My thought are with you all.....Shari

[Sue]

HI Shari,

Just another AN'er wishing you all the best with your treatment and recovery.  I had GK and I'm doing okay.  I'd be doing "better" if the symptoms had gone away, but they are still with me.  Still, the stupid thing is now officially "dying" and I couldn't be more thrilled.   We all understand most of what you are going through and I'm so sorry your employer is giving you grief.  Not very understanding, are they?  And just to say...they might be able to put you out on "disability" but if you apply for disabiltiy from the SS office, be prepared that that is a journey fraught with problems and not very good odds of having it come out in your favor, and many here can attest to.  You do need to have your own lawyer who speicializes in that. 

Still, I wish you all the best.

Sue in Vancouver USA

[Obita]

Hi Shari and Evan:

Welcome!!  Sorry you needed to join this club but it is good to have both of you on.

I am almost three years post op and not a whole lot is different for me than before surgery.  I did have a radiation consult but was borderline candidate due to placement of my AN.

CK is Cyber Knife, GK is Gamma Knife.  Both are types of radiation.  Translab is a surgical approach.  It does guarantee deafness but gives the surgeons a better view of the facial nerve.

Keep the questions comming.  Someone on here will have an answer for you.

Best of luck to you both, Kathy