heart or head?

[mrh]

Hi. I don't know what I have at the moment - but I need to make a decision. Long story, but I have an implanted cardiac defibrillator because of a very nasty family history of sudden cardiac death and hypertrophic ventricular cardiomyopathy, and some proven arrythmia events. About 8 weeks ago I had a horrible incident thoug  where I without warning developed a really stiff and painful neck and then what was described as a 'thunderclap' headache, along with dysphasia, (I couldn’t speak more than one syllable at a time although I new fully what I wanted to say) and significant loss of hearing in my left ear and left side face numbness. So they rushed around in the Emergency room and I had a ct scan and a lumbar puncture as they were worried about an aneurism or meningitis. The tests came back clear, and by morning and after a lot of medication I was feeling better. The neurologist still wanted to do an MRI the next morning as he was convinced there was likely to be a vascular problem somewhere, but my cardiologist was equally adamant that it was a danger for me to have the defibrillator damaged or removed. Since then though I have had tinnitus in the left ear, a sense of fullness and some hearing loss in the left ear. I also am dizzy if I bedn over quickly and sometime have 'sailors legs' and stumbe a bit. . The audiologist has said some of the finding s are consistent with an AN, and I should return to the neurologist and have an MRI with contrast - but my cardiologist disagrees.

I know this is my decision to make in consultation with medical advice - but I was wondering had anybody else had such an event like I did that was confused with an aneurism but then seem to resolve.

[leapyrtwins]

The only definitive way to diagnose an acoustic neuroma - or to rule one out - is with an MRI.  MRI with gadolinium contrast is best.

I don't know if your symptoms are consistent with heart problems or not, but they are consistent with an acoustic neuroma.  Not necessarily the tinnitus, but the fullness and the diminished hearing (both symptoms that I experienced before being diagnosed). 

These symptoms could also be something else though.

If it were me, I'd insist on an MRI with contrast, but obviously it's your call.

Jan

[jerseygirl]

Hi, Mrh,

Heart problems are going to kill you a lot faster than AN, so I would go at this point with your cardiologists's advice. What about the times  (very familiar to me) when they did not have an MRI with contrast? How did they diagnose AN? It can actually be done but the diagnosis will result in a larger AN simply because MRI with contrast is more accurate. CT scan will also show AN but much bigger because it is less accurate than MRI and I believe now it can also be done with contrast (all the nurses out there correct me if I am wrong). After CT shows a tumor in that area, BAER (Brainstem Auditory Evoked response, or ABR as it is sometimes called) will confirm the involvement of the acoustic nerve where AN resides. This is a non invasive test with electrodes being placed on your head and has a very high accuracy rate for greater than tiny AN. It is done by ENT, no neurosurgeon involved. It also will be abnormal even if you hearing is completely normal (my case). This is how they diagnosed my AN in 1988. I really don't think you have to choose between your heart and your head, you can have both. If the CT scan now shows no tumor, it either too small to show up or it does not exist. Only repeated CT scans over the years will show which is true. Good luck and keep us posted.

                                                                     Eve

[lori67]

I agree with Eve.  You kinda want to have both - a heart and a head.   

I also agree that there are other things that can be done without having to remove or damage the defibrillator - and Eve, I think you've got some great ideas.  Maybe you need to start putting MD after your name!   

I would side with the cardiologist at this point, if I were you.  As unpleasant as it is, you can live with tinnitus or some hearing loss but you really need a heartbeat.  If nothing showed up on the CT you had, chances are if there's an AN there, it's quite small, so you have some time to get to the bottom of this problem.  You don't want to risk your health to have a test that may not show anything anyway.  There are other conditions that have similar symptoms as an AN.  It may be easier to rule those out first.

Good luck to you.
Lori

[jerseygirl]

Lori,

Thanks for a compliment. Unfortunately, I picked up this AN stuff by being a patient far too long, not through medical education. That would have been, I imagine, a much happier (and pain-free) experience.

                               Eve

[leapyrtwins]

Have to admit, when I responded I didn't pick up on the potential damage or removal of the defibrillator 

So, I'm changing my answer and going with what Eve and Lori said.

Jan

[Lizard]

I agree, there are other ways to diagnose, just not as accurate.  Go with your gut on this one.
Good luck with your decision,
liz

[Sam Rush]

Agree with Eve. The CT will eventually pick it up if it grows enough.