Author Topic: New here, doctor suspects possible AN  (Read 3384 times)

2twentyfour4

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New here, doctor suspects possible AN
« on: March 27, 2013, 01:20:38 pm »
Hello all,

I'm a 34 year old female. I started having bouts of vertigo in 2003. They would come and go and were always short lived. I had one debilitating episode where I couldn't drive for about 3 days. My doctor kept giving me Antivert and never explored it further. They said I had BPPV and nothing could be done.

I went to see a neurologist in 2010 for numbness and tingling in the hands and feet, visual disturbances, and muscle spasms. He performed every neurological test on me, suspecting MS. Almost all of my tests were negative, with the exception of my VNG, which showed a 37% caloric weakness in my right ear. Also my MRI showed a Chiari malformation of 4mm. When I met with my doctor again, he said "your brain is sitting too low in your skull, but we won't talk about surgery yet." I had to get copies of my tests to even find out it was called Chiari. He said as far as the vertigo was concerned, there was nothing that could be done. Feeling confused and frustrated, I sought out the opinions of two other neurologists. Neither of them felt that Chiari was causing my symptoms.

Fast forward to the end of last year. I experienced sudden hearing loss in my right ear. It happened after my boyfriend kissed my ear (kind of embarrassing to talk about). There wasn't any suction or anything like that but my hearing was definitely not right. After the second day it didn't return to normal so I went to see an audiologist. He performed a hearing test and compared it to the one I had done in 2010 when I came there for my VNG. It showed definite hearing damage. He referred me to see an ENT as soon as possible. The audiologist and ENT were both perplexed by the cause of my hearing damage, and I suspect maybe they felt that wasn't the cause. I went through a course of prednisone in an attempt to save my hearing. My repeat hearing test showed a miniscule improvement. My ENT then sent me for vestibular rehab for my vertigo.

The therapist confirmed it was BPPV on my right side (it's always been on the right side) and she did some maneuevers and showed me some exercises to do at home. After this, I thought I was cured and was very happy.

Last Thursday I woke up and when I opened my eyes, the room was spinning. I rolled over and was gripping the bed cuz I felt like I was falling. I sat up and the spinning continued. I became sweaty and extremely nauseous. I tried to get up and found that walking was a challenge. I tried to lay back down and the spinning got worse. I tried laying on my left side because I have always only had trouble on the right. The spinning was just as bad on both sides, which I have never experienced before. I couldn't move my head. I was completely at the mercy of the vertigo. I couldn't drive or do anything. I missed 2 days of work and couldn't even sleep in my bed. I had to sleep in a reclined position, which got pretty uncomfortable. Then suddenly, it went away this past Sunday. I was also experiencing a fluttering and pulsing sound in my right ear during these few days.

I went back to my ENT on Monday. He seemed concerned by the worsening of the vertigo and the fact that it was now on both sides. He wants to repeat my hearing test and go from there. He said I could possibly have an acoustic neuroma, but wants to do the hearing test and an MRI if that shows my hearing has deteriorated. I'm pretty nervous about this.

Thank you for reading and I apologize for the length. I just wanted to give my full history.

Jim Scott

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Re: New here, doctor suspects possible AN
« Reply #1 on: March 27, 2013, 03:24:27 pm »
Hi - and welcome ~

These sudden-onset symptoms, specifically the extreme vertigo, are clearly perplexing but the MRI results should answer a lot of questions, including whether or not your symptoms are being caused by an acoustic neuroma - or something else.  ENT physicians tend to fous on the ear and sometimes miss the real problem which lies within the skull, not the ear.  However, assuming your hearing test shows some hearing deterioration or is inconclusive, I would push the doctor to order an MRI which will rule an acoustic neuroma in or out as the cause of your symptoms.  Although ANs are generally slow growing, some are the opposite and time should not be wasted seeking alternative causes when an MRI (with contrast) can answer the question of whether you have an acoustic neuroma (or something else previously undetected).  Please check back to let us know what happens.  Thanks.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

spiderwebb72

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Re: New here, doctor suspects possible AN
« Reply #2 on: March 27, 2013, 04:26:14 pm »
Hello,
I had a similar progression to yours. Spent years going to doctors for various sypmtoms (hearing loss, vertigo, sudden nausea, etc) and every doctor seemed to think it was something else.
Then suddenly i became extremely dizzy like you, but i also went partially numb on my left side. Unfortunetly i wasn't asleep, i was driving!
Thankfully my sister was with me and rushed me to the hospital where the MRI revealed the AN.
If it is an AN, don't panic. Mine ended up being about the worst case possible ( was very large) and they were able to get it out. They are very good at this surgery now days. Just remember that it will take time after surgery to recover and be patient.
Good luck, hope all goes well for you.

james e

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Re: New here, doctor suspects possible AN
« Reply #3 on: March 27, 2013, 04:50:28 pm »
Sounds just like me 4 years ago. MRI w/contrast will show if you are one of "us." If you are, this is a good place to be. Keep us informed.

James

Kathleen_Mc

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Re: New here, doctor suspects possible AN
« Reply #4 on: March 28, 2013, 01:35:53 am »
some of this sounds familiar, you need an MRI to determine if you're to become a member of our "club"......
Understandably you are nervous, who wouldn't be, try to just "take it as it comes".....bit I know that's easier said than done. Hopefully you won't have to wait too long for the MRI/results.
Keep in touch
Kathleen
1st AN surgery @ age 23, 16 hours
Loss of 7-10th nerves
mulitple "plastic" repairs to compensate for effects of 7th nerve loss
tumor regrowth, monitored for a few years then surgically removed @ age 38 (of my choice, not medically necessary yet)

2twentyfour4

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Re: New here, doctor suspects possible AN
« Reply #5 on: March 28, 2013, 10:36:31 am »
Thank you all so much for your replies. This has been a rollercoaster for me. Vertigo is such a strange and terrifying thing. Those who have never experienced it don't seem to understand how it can literally prevent you from doing anything. I was afraid I was going to end up losing my job over it, but luckily it went away as abruptly as it came on.

I have my hearing test next week on Wednesday. I will keep you posted. This seems like a great place for support

leapyrtwins

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Re: New here, doctor suspects possible AN
« Reply #6 on: March 29, 2013, 08:23:28 am »
Have you thought about seeing a neurotologist?  They are more specialized than ENTs.  Just an idea.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

jaylogs

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Re: New here, doctor suspects possible AN
« Reply #7 on: March 30, 2013, 03:15:36 pm »
Hi there and welcome! As Jim said, an MRI should clear up any questions once and for all.  I also had severe vertigo, only two bad episodes, each lasting a full day.  A lot of people have had a lot of symptoms that all look like AN, but end not being.  We can only hope and pray that you do not, but if you do, it's not  a death sentence at all.  So let us know how it goes! Take care and hang in there!
Jay
8.1mm x 7.8mm x 8.2mm AN, Left Ear, Middle Fossa surgery performed on 12/9/09 at House by Drs. Brackmann/Schwartz. Some hearing left, but got BAHA 2/25/11 (Ponto Pro) To see how I did through my Middle Fossa surgery, click here: http://www.caringbridge.org/visit/jaylogston