New Member Lex Wedemeijer

[Guest guest]

My name is Lex Wedemeijer, I live in Maastricht, the Netherlands. I'm

male, 46 years old, I have a wonderful spouse, and I happen to have no

children (which I think is formunate, in hindsight). I have a university

degree. I work in the Computer department of a large insurance company.

In the summer and fall of 1998, I experienced hearing loss in the right

ear that just didn't go away. I had trouble hearing and understanding my

wife, but the most clear manifestation was that I couldn't hear the

telephone dialling tone. After some unsuccessful tests, the doctors

suggested an MRI scan which was done in december 1998.

The MRI clearly showed a vestibular schwannoma protruding approximately

1,7 cm out of the inner channel on the right side. This was not totally

unexpected, regarding the unilateral hearing loss.

However, the doctors detected another, tiny AN on the left side, and I

was declared an NF2.

Actually, I was the first NF2 patient at this particular hospital so the

doctors were very interested. Their advice was to leave the small AN for

the time being, but to operate on the other in order to extract it,

making me totally deaf in the process.

However, I went for a second opinion and I saw a neurosurgeon (as

opposed to Ear-Nose-Throat doctors the first time around). He advocated

Gamma Knife as it would possibly save some hearing.

I was Gamma Knifed in 1999 by dr Karlsson, a Swedish specialist. He

performed the procedure in Krefeld, Germany. It went as well as can be

expected, and I still have residual hearing in the right ear. Howver,

basically I'm a one-eared listener now, because the hearing loss in the

right ear amounts to somewhere around 100 dB.

The AN in the untreated left ear is mostly unnoticed, although it causes

occasional problems such as weird sound effects and sudden (temporary)

drops in hearing levels. Still, my hearing is good enough to be able to

hide my hearing problems for most people.

I only need to tell about my disability to people that I meet on a

regular basis.

I've informed many collegues at the office, and they are very

considerate with me: I get to pick the best place in meetings, and I

share an office room with one collegue, instead of having to work in the

open office work space with is invariably very noisy.

Apart from bilateral AN, I have no other tumors.

I expect to become totally deaf eventually, but not too soon. And

currently, I have no problems with my balance whatsoever. Tests showed

that the right vestibular organs aren't functional any more, but

apparently I have compensated.

The future development of the NF2 all depends on the growing speed of

the left AN which is being monitored on an annual basis. The difficulty

of course will be in selecting the best time for action: to administer a

treatment either too soon or too late will invariably lead to

unnecessarily loss of hearing.

[Guest guest]

HELLO LEX

MMY NAME IS CATHERINE I AM 64 YEARS OLD FIRST AN IN 1980 A REOCCOURING

IN 85 AND THEN IN 91 A AN ON THE OPPISITE SIDE TOTAL DEAF SINCE 91 BUT HAVE

AN ABI WHICH GIVES ME SOME SOUND AND MAKES LIP READING MUCH EASIER

IT SOUNDS LIKE YOU HAVE THE BERY BEST DOCTORS AND ARE VERY WELL INFORMED

ABOUT NF2

WELCOME TOP THE CREW A LOT OF GREAT FREINDS HER

BLESSINGS

CATHERINE

New Member Lex Wedemeijer

> My name is Lex Wedemeijer, I live in Maastricht, the Netherlands. I'm

> male, 46 years old, I have a wonderful spouse, and I happen to have no

> children (which I think is formunate, in hindsight). I have a university

> degree. I work in the Computer department of a large insurance company.

>

> In the summer and fall of 1998, I experienced hearing loss in the right

> ear that just didn't go away. I had trouble hearing and understanding my

> wife, but the most clear manifestation was that I couldn't hear the

> telephone dialling tone. After some unsuccessful tests, the doctors

> suggested an MRI scan which was done in december 1998.

>

> The MRI clearly showed a vestibular schwannoma protruding approximately

> 1,7 cm out of the inner channel on the right side. This was not totally

> unexpected, regarding the unilateral hearing loss.

> However, the doctors detected another, tiny AN on the left side, and I

> was declared an NF2.

> Actually, I was the first NF2 patient at this particular hospital so the

> doctors were very interested. Their advice was to leave the small AN for

> the time being, but to operate on the other in order to extract it,

> making me totally deaf in the process.

> However, I went for a second opinion and I saw a neurosurgeon (as

> opposed to Ear-Nose-Throat doctors the first time around). He advocated

> Gamma Knife as it would possibly save some hearing.

>

> I was Gamma Knifed in 1999 by dr Karlsson, a Swedish specialist. He

> performed the procedure in Krefeld, Germany. It went as well as can be

> expected, and I still have residual hearing in the right ear. Howver,

> basically I'm a one-eared listener now, because the hearing loss in the

> right ear amounts to somewhere around 100 dB.

>

> The AN in the untreated left ear is mostly unnoticed, although it causes

> occasional problems such as weird sound effects and sudden (temporary)

> drops in hearing levels. Still, my hearing is good enough to be able to

> hide my hearing problems for most people.

> I only need to tell about my disability to people that I meet on a

> regular basis.

>

> I've informed many collegues at the office, and they are very

> considerate with me: I get to pick the best place in meetings, and I

> share an office room with one collegue, instead of having to work in the

> open office work space with is invariably very noisy.

>

> Apart from bilateral AN, I have no other tumors.

> I expect to become totally deaf eventually, but not too soon. And

> currently, I have no problems with my balance whatsoever. Tests showed

> that the right vestibular organs aren't functional any more, but

> apparently I have compensated.

>

> The future development of the NF2 all depends on the growing speed of

> the left AN which is being monitored on an annual basis. The difficulty

> of course will be in selecting the best time for action: to administer a

> treatment either too soon or too late will invariably lead to

> unnecessarily loss of hearing.

>

>

>