BoTox for night time snoring problems

September 23, 2002

Thanks to several of you who have posted replies to my initial

question. Especially appreciate

Pam’s research papers. I took those

to the Docs.

Interestingly he was amazed, as he had read one of them as well, and had

been considering BoTox injections as a treatment.

Brief Background. has

LOUD snoring at night. It

resonates throughout the house.

Even with earplugs (industrial ones) no one can sleep on the first

floor. Had sleep studies done, and

it is NOT apnea. It is the vocal

chords folding over each other and vibrating. Seems to result in the noise, and a constant strain on the

chords, leading to a great difficulty talking during the day. Started with noise in shortly after she

fell asleep, and very early in the AM, but now is constant, the whole night

through.

After the negative sleep study (Which Medicare refuses to pay for, as a

side note,) they performed an EMG.

This showed that the nerves in the vocal chords were basically

conducting. Then a visual exam of

the chords themselves, showing that they were OK, but that at least one side

was weaker than the other. Finally

a swallowing study, showing that a small amount of food was in fact going into

the airway. does not sense

that at all, but the Doc said that most people would be couching a lot with

that amount going into the airway.

After digesting all this, they are going to do a BoTox injection into

one of the vocal chords on October 4th. If that helps a bit they will do the other in two

weeks. The belief is that the

injection will open the distance between the chords and prevent them from

overlapping, stopping the snoring and making life a lot safer. Negatives…voice will probably be weaker

(a speech therapist suggested a device called the ChatterVox, which I found on

the Internet for $160.00, which amplifies even a whisper to a normal hearing

range), and possibly some additional difficulties in swallowing.

They believe that this (strider, I think is what they call it) is a

major cause of death, as the vocal chords, once overlapping can be held shut,

and people die of asphyxiation. They feel this is serious enough that an alternative to a case as serious as ’s in a

permanent tracheotomy. They have

also said that the devices that help apnea will not help this.

Hope this helps some others.

It is a long process of discovery.

Had an interesting thought…5 years ago we prayed for a cure…today we

pray that even one symptom can be helped.

God’s blessings to all.

September 23, 2002

, Thanks for your detailed description. I'm quite sure this will help others. This is the first time I've seen a real laymen's explanation for what I always felt was my mother-in-law's most baffling symptom. Her snoring was SO LOUD!

I hope you won't give up on trying to get Medicare to pay for the sleep study. I'm just looking around for articles that mention sleep problems and MSA. This one looks like it's been updated recently and it specifically says that sleep apnea is a major cause of death in MSA patients.. what better reason could there be for having a sleep study done!

http://www.mc.vanderbilt.edu/gcrc/adc/msa.html

This one mentions sleep apnea also.

http://www.bcm.tmc.edu/neurol/jankovic/educ_msa.htm

This one says "Sleep is severely impaired in many of these conditions, particularly in PSP and MSA. Patients with MSA have more sleep-disordered breathing events than that which occurs in idiopathic PD."

http://www.sleepfoundation.org/publications/sma2.4.html

Take care,

Pam

-----Original Message-----From: Huenink Sent: Monday, September 23, 2002 12:54 PMTo: shydrager Subject: BoTox for night time snoring problems

Thanks to several of you who have posted replies to my initial question. Especially appreciate Pam’s research papers. I took those to the Docs.

Interestingly he was amazed, as he had read one of them as well, and had been considering BoTox injections as a treatment.

Brief Background. has LOUD snoring at night. It resonates throughout the house. Even with earplugs (industrial ones) no one can sleep on the first floor. Had sleep studies done, and it is NOT apnea. It is the vocal chords folding over each other and vibrating. Seems to result in the noise, and a constant strain on the chords, leading to a great difficulty talking during the day. Started with noise in shortly after she fell asleep, and very early in the AM, but now is constant, the whole night through.

After the negative sleep study (Which Medicare refuses to pay for, as a side note,) they performed an EMG. This showed that the nerves in the vocal chords were basically conducting. Then a visual exam of the chords themselves, showing that they were OK, but that at least one side was weaker than the other. Finally a swallowing study, showing that a small amount of food was in fact going into the airway. does not sense that at all, but the Doc said that most people would be couching a lot with that amount going into the airway.

After digesting all this, they are going to do a BoTox injection into one of the vocal chords on October 4th. If that helps a bit they will do the other in two weeks. The belief is that the injection will open the distance between the chords and prevent them from overlapping, stopping the snoring and making life a lot safer. Negatives…voice will probably be weaker (a speech therapist suggested a device called the ChatterVox, which I found on the Internet for $160.00, which amplifies even a whisper to a normal hearing range), and possibly some additional difficulties in swallowing.

They believe that this (strider, I think is what they call it) is a major cause of death, as the vocal chords, once overlapping can be held shut, and people die of asphyxiation. They feel this is serious enough that an alternative to a case as serious as ’s in a permanent tracheotomy. They have also said that the devices that help apnea will not help this.

Hope this helps some others. It is a long process of discovery.

Had an interesting thought…5 years ago we prayed for a cure…today we pray that even one symptom can be helped.

God’s blessings to all.

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September 23, 2002

, Pam and others,

The vocal cord paralysis and overlapping was mentioned by Dr. Freeman at the Boston meeting as a possible cause of sudden death in MSA patients. He said it is important to be vigilant about this as tracheotomy may be necessary to prevent sudden death, especially in sleep.

Hopefully the tapes from that meeting will be available soon -- I heard from Don that he has received at least an initial set.

Carol & Rob

Lexington, MA

RE: BoTox for night time snoring problems