General Category > AN Issues

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

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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.  :D

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