Great Forum

[madshackle]

Hi all

I'm just dropping by to introduce myself. I joined the club last Summer after nearly going deaf on my right side. I did research and asked my primary doctor to send me to an ENT who basically said that the hearing loss was only going to get worse and I would have to live with it. He then said he wanted me to get a MRI to check my brain to rule something out...we all know what happened there...I got the MRI, but he wouldn't return my calls for the week following when I was trying to get the results. Then he left the country for two weeks and no one in his office would give me the results. Mind you, I already figured out what he was trying to rule out by google searching hearing loss and brain scan. So I was feeling pretty crazy after he returned and continued to duck my calls for three more days. His receptionist insisted that the results must be fine, or he would have called me right away. So, I finally get him on the phone and got the news. We have all been there, looking into the abyss, time stops briefly and then you take action. The first thing I did was get a new ENT !

Anyway, I'm glad I found this place, it has really helped to hear first hand from other people going through this.

peace
Dave

[Palace]

Dear Dave,


Yes, we need to be independent and think for ourselves making intelligent decisions.  It is better getting other opinions, anyway.

I'm only six months out of CK and going through my six month checking right now.  I had the audiologist appointment last week, this week (today) a neck MRI and next Tuesday is my brain MRI.

We are all here for you.  Yes, it is a struggle and doing the most research you can is so important for you to sort things out.

I haven't been online because, a tree fell across the street almost a month ago.  It snapped the big pole, took the lines out and destroyed my computer.  (no power for over a half a day)  I just got this computer back from the shop.  It came back with less ram so, I think it is going back to the shop soon.  (for those who wonder where I am)

Anyway, others will be online for you.



Good luck Dave.........



Palace

[ppearl214]

Hi Dave and welcome. Glad to see you here and that you are gaining a lot of info here on the forums.  You are very fortunate that they found your AN at such a small size and that you are hanging in there as best as you can.  There are many "wait/watch" folks here and know that we are all here to support you.  I look forward to your further participation here on the discssion forums and just want to say "hi".

Again... welcome!

Phyl

[Jim Scott]

Hi, Dave: 

Welcome to the forum that we all wish we didn't need but are glad to have available.  Lots of 'watch-and-waiters' post here, so you're in good company.

I guess that I was almost fortunate to be able to by-pass an ENT and deal with just my primary care physician.  He had referred me to an ENT some years earlier for my single-sided deafness, but I decided not to go.  I already knew I couldn't hear out of my left ear and I assumed the ENT specialist couldn't do much for me.  Perhaps I was correct.  I'll never know for certain but I've seen many posts stating that an ENT physician wasted patient's time (and money) by misdiagnosing them.  They often seem to be clueless about the possibility of a patient having an acoustic neuroma tumor - or they simply don't consider ordering the MRI scan that would either identify or rule out an AN as a cause of the symptoms a patient is exhibiting and that ear medications are not addressing.  Your ENT sounds like the kind of doctor that gives other doctors a bad reputation.  I'm glad you decided to cut him loose.

In May, 2006, I presented my primary care physician with a 'sudden' - six months - loss of appetite (I lost 30 pounds), profound listlessness and, of course, my now long-term (5 years) single-sided deafness.  He ordered an MRI (looking for a sinus problem) and found the AN tumor, instead.  He called me the evening he received the MRI report - at home, from his home.  He offered his sympathy (not all that reassuring) and referred me to a surgeon (I eventually went with a different surgeon).  I had retrosigmoid surgery less than a month later, FSR 3 months following.  No real complications.  I 'm happy to report that I'm doing very well, almost a year out of surgery.  While my 'AN experience' will necessarily be a part of my life history (and my medical record), My AN is quickly becoming a distant memory - and that's fine with me.  I continue to visit this site and post on the forums in order to help and encourage others and to offer whatever advice I can.  I'm pleased that you find the site and forums helpful.  That's our 'mission'.

I hope your AN stays dormant but at least radiation remains an option, if necessary.  Thanks for posting.  Stay well. 

Jim

[madshackle]

I just want to thank everyone for the kind words and sound advice. It's helpful to read first hand accounts , makes me feel less alone with all this. My girl friend has been great this past year, but I would rather not burden her too much with this stuff since it freaks her out just as much as me.

peace
dave

[Crazycat]

Hi Dave!

      Just read your post. Unbelievable. With doctors like that guy, who needs them? Sort of like, "with friends like that, who needs enemies?"

I suffered with my growth for six years before I could get to a doctor - no insurance. By that time, I had diagnosed myself - with the aid of a blood test that bore out the fact that I had a normal CBC or complete blood count. I came to the conclusion that I had a noncancerous growth on my inner ear referred to as an "Acoustic Neuroma". But if the truth be told, without the conclusive evidence from an MRI, your guess is as good as mine. As soon as I had that MRI though, the phone was ringing off the hook and I had a surgery date set for a shunt installation for ten days later. The very next day after my MRI I was sitting in the office of one of the finest neurosurgeons in the country.

  It was funny, I was telling the doctors what I had before being officially diagnosed. Tell me, what was that doctor's excuse for hedging on you after you finally talked with him?

        Paul

[BeJoi]

Just want to put a plug in for my ENT, who, surprisingly enough is with Kaiser, and suspected a problem due to the lopsided hearing loss.  He ordered an MRI along with lots of blood work to rule out any problem.  The blood work was good; the MRI showed the AN.  I'm very grateful that he recognized the symptoms and acted on it immediately.  I feel very fortunate in that regard.

Good luck on your journey.

Beverly

[madshackle]

 
 Tell me, what was that doctor's excuse for hedging on you after you finally talked with him?

        Paul

He maintained that since it is a benign tumor and very small, waiting until he could see me for an follow-up appointment was the thing to do. He only has hours once a month ( he teaches and performs surgeries the rest of the time ), so there for...

I think the guy's insensitive. Finding a small AN may not be a big event for him, but it was for me ! I also think he could be a liability for the hospital. I could see someone suing over a delay like that. All I want is good medical care which I have now so I'm putting that particular event behind me.

Peace
Dave