deafness and lipomas, esp. MSL

September 21, 2004

Hi Alice et al

Thanks for your welcome. It's a pleasure to be among others who have

apparently already gone way beyond passive submission to " doctor knows

best " . I guess the art here, is to appropriately PARTNER with the

(too-rare?) doctors who are willing to support our quest to understand and

effect our own healing. For too long, I despaired of EVER finding this kind

of partnership, but lately there are encouraging signs.

I too have deafness, in my case considerable but not complete. I have

reasonably useful hearing via a pair of digital CIC (the little ones,

Completely In Canal) hearing aids. I hope it goes without saying, Alice,

that I wish for your eventual success with the CI, and return to hearing.

Problems in hearing and vision are sometimes associated with MSL (and mito

generally, I think), which is a mystery to me. I can somewhat understand the

systemic mito effects, and I supppose that over time, many structures could

be sort of worn away or otherwise compromised, and it's hard to say how or

why. But I also read that lipomas in or near the parotid (salivary) glands

(VERY close to the inner ear) have been found on occasion, in cases of

lipomatosis. Before my second surgery I had a head CT scan. Annoyingly, I

couldn't get a straight answer from the surgeon or the anonymous " reader " as

to exactly what was found, except that it was " negative " . At the time, to be

fair, neither my surgeon nor I had any suspicion (or knowledge) of MSL or

mito disorders in general. I think they were looking for a brain malignancy.

But I now understand that there are certain " weightings " (like T3 or T4

whatever???) for MRI which can better image soft tissue (like lipomas). So I

have some hope that my upcoming MRI will be more useful. I have also

acquired much more lipoma growth since that CT. Based on my many head and

neck pains and sensations, I will be astonished if the MRI does NOT show

deep involvement. Hopefully the MRI people will know what to do, but

(obviously) I'm more than curious. Can anyone further explain the desired

settings or weightings, etc. that are best for this use?

Steve D.

> Date: Mon, 20 Sep 2004 08:02:21 -0600

>

> Subject: Re: Multiple Symmetrical Lipomatosis (MSL)

>

> Hi Steve.

>

> Welcome to the group. I sincerely enjoyed reading your post and hope it's

just the beginning and that we will hear much more from you. Yes - this

group is familiar with MSL. I know it is not an easy thing to deal with. I

have concerns about the size and location of this lipoma and whether it's

causing my CI (cochlear implant) to be useless to me. Right now, no one

knows why it doesn't work. I've had two surgeries on that side and the

first one worked beautifully for 3 months before sound started to become

more and more distant. We thought the first one was defective so I had a

second surgery done. When we tried to activate the implant, I had nothing

and I still have nothing. I am deaf and the CI is my only hope of regaining

the world of sound.

>

> I hope that helps explain what a CI is but if you want further

explanation, I can share that too. Please just ask.

>

> Alice

September 21, 2004

Steve

The systemic effects that you mention are also caused by damaged

mitochondria. Every cell, but red blood cells and sperm heads, have many

mito. so it depends on the number or good versus bad in each cell as to how

it works.

I had a CT scan that didn't show the lipomas. My doctor ordered an MRI with

fat supression, so they showed up in reverse color (white or black). This

showed them clearly.

laurie

>

> Reply-To:

> Date: Tue, 21 Sep 2004 03:45:00 -0400

> To: >

> Subject: deafness and lipomas, esp. MSL

>

> Hi Alice et al

>

> Thanks for your welcome. It's a pleasure to be among others who have

> apparently already gone way beyond passive submission to " doctor knows

> best " . I guess the art here, is to appropriately PARTNER with the

> (too-rare?) doctors who are willing to support our quest to understand and

> effect our own healing. For too long, I despaired of EVER finding this kind

> of partnership, but lately there are encouraging signs.

>

> I too have deafness, in my case considerable but not complete. I have

> reasonably useful hearing via a pair of digital CIC (the little ones,

> Completely In Canal) hearing aids. I hope it goes without saying, Alice,

> that I wish for your eventual success with the CI, and return to hearing.

>

> Problems in hearing and vision are sometimes associated with MSL (and mito

> generally, I think), which is a mystery to me. I can somewhat understand the

> systemic mito effects, and I supppose that over time, many structures could

> be sort of worn away or otherwise compromised, and it's hard to say how or

> why. But I also read that lipomas in or near the parotid (salivary) glands

> (VERY close to the inner ear) have been found on occasion, in cases of

> lipomatosis. Before my second surgery I had a head CT scan. Annoyingly, I

> couldn't get a straight answer from the surgeon or the anonymous " reader " as

> to exactly what was found, except that it was " negative " . At the time, to be

> fair, neither my surgeon nor I had any suspicion (or knowledge) of MSL or

> mito disorders in general. I think they were looking for a brain malignancy.

>

> But I now understand that there are certain " weightings " (like T3 or T4

> whatever???) for MRI which can better image soft tissue (like lipomas). So I

> have some hope that my upcoming MRI will be more useful. I have also

> acquired much more lipoma growth since that CT. Based on my many head and

> neck pains and sensations, I will be astonished if the MRI does NOT show

> deep involvement. Hopefully the MRI people will know what to do, but

> (obviously) I'm more than curious. Can anyone further explain the desired

> settings or weightings, etc. that are best for this use?

>

> Steve D.

>

>> Date: Mon, 20 Sep 2004 08:02:21 -0600

>>

>> Subject: Re: Multiple Symmetrical Lipomatosis (MSL)

>>

>> Hi Steve.

>>

>> Welcome to the group. I sincerely enjoyed reading your post and hope it's

> just the beginning and that we will hear much more from you. Yes - this

> group is familiar with MSL. I know it is not an easy thing to deal with. I

> have concerns about the size and location of this lipoma and whether it's

> causing my CI (cochlear implant) to be useless to me. Right now, no one

> knows why it doesn't work. I've had two surgeries on that side and the

> first one worked beautifully for 3 months before sound started to become

> more and more distant. We thought the first one was defective so I had a

> second surgery done. When we tried to activate the implant, I had nothing

> and I still have nothing. I am deaf and the CI is my only hope of regaining

> the world of sound.

>>

>> I hope that helps explain what a CI is but if you want further

> explanation, I can share that too. Please just ask.

>>

>> Alice

>

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September 21, 2004