Unusual Presenting Symptoms

[HostMom]

On January 15, I woke up experiencing rapidly progressing neurological symptoms completely out of the blue after leading an active, normal life for 53 years.  My legs would collapse out from under me as I went to sit down, my vision was skewed and often double, my hands grew more and more numb, my mouth became very numb affecting speech and swallowing, and I was crashing into walls or lurching from one point of stability to another.  The symptoms, which were all symmetrical, progressed hour by hour.  On the night of the 16th, I was given a brain scan and a 2 cm AN was discovered on the left side.

I was hospitalized for four days as I got worse and worse.  I was losing my ability to walk (legs numb too), and my speech was increasingly slurred and very difficult to form (lost ability for saying certain letters totally).  I truly felt I was on the road to paralysis

Strangely enough, my hearing is perfect.  My facial nerves are fine.  And my sense of balance seems good to me (no vertigo, dizziness, etc.)---the walking problems were more related to an inability to control/signal my legs.

Has anyone experienced these symptoms, particularly so suddenly?

The explanation is that the AN is located in the back half of the internal auditory canal and does not come near the inner ear.  It is jutting out into the cerebellum near the brain stem.  It may have had a sudden growth spurt or some bleeding that precipitated sudden acute symptoms.  The AN is presumably on the balance nerve (I've lost 25% function there though I don't really sense that).  Maybe it explains my fear of heights in recent hiking trips!

The symptoms began to subside on the sixth or seventh day, and function has come back in almost all areas.  I anticipate that in a few days, I could feel back to normal.

I will have surgery through the ear on 3/26 (after a planned business trip to China in early March), and I have been very optimistic and hopeful, but I'm also glad to have some realistic sense from this forum of what to expect.

I will be heading into my busiest point of the year at work (placing high school exchange students for Youth for Understanding) as we try to make sure that all the kids will be taken care of for next year.  I want to do everything I can now to make myself strong for the surgery, so any thoughts are greatly appreciated!

Thanks in advance for all your support!

Barb

[jen]

HI Barb,

Your additude alone will get you through this surgery.  You sound very strong.  I did not experience anything with my legs going numb etc, but my symptoms did hit me within a few days...dizzy & deaf.  I did try to get into the best shape i could before surgery, and also, i was aready having balance issues, so i began to train myself to ignore my lack of balance even before surgery, just like gymnastics...i would pick a spot straight ahead when i walked, thanks to that, balance was only a problem for a week at most post op.  To look at your surgery as an inconvinience is a great way to get through it, as silly as that sounds.  You have got to get back to your every day life as soon as you can...that was the attitude i kept, and it worked.  I was up walking around the day after my surgery and out of the hospital on the fourth day, I was actually the record breaker at sunnybrook in Toronto canada for my short stay.  I was just so excited to put it all behind me.  And now it IS almost totally behind me and I am only 4 months post op and have been working full time for 7 weeks already.  I'm 29 (mine was a facial nerve tumor), my hearing nerve was severed, balance nerve severed, can't taste on one side of my mouth, my face was horrid!  now it already has alot of movement back...its all in your head.  lol...spoken like a true ANer...all in your head.  Keep your mind and your heart strong and your body will follow.  Best of luck to you, stay strong!

[Brendalu]

Wow Barb!
You are truly amazing!  My symptoms came on kind of suddenly because I wasn't paying attention to things that I just figured were part of who I am.  My hearing was perfect.  My balance, dizziness, legs going out from under me, arm going numb all were part of what my doctor decided I needed an MRI for.  I thought I was clutzy!!  I'm a little older than you are and have MS, so I just thought I was having an episode.  I am eighteen months post op and still have dizziness, balance issues and migraines, but the surgery is behind me.  I lost the hearing in my right ear.  My AN was 3.5 cm, pressing on my brain stem.  Everyone is different and you sound like you have a handle on everything and have a great attiude.  Have a great trip to China.  I was a host mom to a gal from Norway and one from Spain.  Both great experiences.
Hugs,
BrendaO

[Boppie]

Barb, I sent two articles to your email for some exercises.

[Sam Rush]

Sounds like a transient cerebellar stroke.

[Denise]

I am on the same page as Sam.

A week ago Sunday, my uncle was admitted to the hospital with symptoms similar to yours, his diagnosis was an intercranial stroke.  He is doing fine, now, but will be going through some rehabilitation.

Denise

[HostMom]

Thank you all for your helpful comments (especially the exercises I can begin now).  I'm feeling stronger every day.  I'm already back to riding the exercise bike a little, and trying to boost my strength from the days of inactivity.  Other than my vision being slightly off, I wouldn't know there was anything wrong with me at the moment.  I'm fairly symptom-free, whereas a week ago, I thought I was on my way to paralysis.

My doctor did say that there may have been some slight bleeding that caused the intense symptoms, or an unusual, sudden growth spurt of the AN jutting into the cerebellum.  But whatever, it is obviously healing with no major lasting side effects that I can feel.

I feel fortunate we were quickly able to identify the right team in our area to do the evaluation and the surgery, and together they do about 150 procedures a year.  (Dr. Daniel Pieper, NS and Dr. LaRouere, ENT at Providence Hospital, Southfield, MI).
 
So, now I'm just waiting until the surgery March 26th while excitedly planning my business trip in China for earlier that month, assuming all goes well in the meantime.

Barb

[chrissmom]

I noticed similar symptoms with Chris.  The slurred speech, loss of balance etc.  - all related to the pressure on the brainstem and the Hydrocephalus.  As the CSF levels in the ventricles fluctuated, the symptoms were more intense. Forunately,  Chris didn't have a stroke of any kind but a 2 cm tumor can certainly block the 4th ventricle and produce pressure enough to mimic one.  Chris was one of the unlucky young people to have a 5+cm AN.  Strangely enough, he claims to have been able to hear 5 months before it was discovered ! We were on a cruise in the Caribbean and he had no balance problems and he claims to have been able to hear.  That certainly was sudden.