OT- Trigeminal Neuralgia

StuInTokyo

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Dec 3, 2010
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#1
I apologize in advance here, I know this is not bike related, but I also know the pool is deep here and I'm hoping someone can help us.
We desperately need some help.
My lovely wife is suffering horribly from "trigeminal neuralgia"
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001751/
We need a good neurologist who knows how to deal with this awful problem. All of the typical doctors we have seen here in Tokyo just tell her that nothing is wrong, well they are wrong. This is often also called "The Suicide Desease" as many people cannot handle the pain and end their lives. How painful is it? Here is a quote from a medial paper on the desease " It has been described as among the most painful conditions known to mankind." that is no small potatoes. If you know someone in the medical community here in Japan that might be able to help, I really need it. I almost lost my love to Cancer, now this is taking the beautiful woman I married away, she is often clouded in a haze of either massive pain, or drugs.
Help!
 

j-sworks

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Feb 5, 2012
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#2
I'm very sorry to hear this, and I hope that you both find a way to deal with the obvious effects on your relationship.

While I can not offer a suggestion in this country I would say that if you can not find a few doctors here to offer competing diagnoses then I would take her back to Canada. VGH (in Vancouver) and UBC have some of the best neurologists in Canada practicing right there; my father had a fall while skiing last year and was dealing with neck problems that resulted in strange visual effects theses places solved the issue, and this after several doctors in the city said "hmm I don't know, you look fine"

Keep your head up
 

Chikako

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May 6, 2012
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#3
Hi Stu,

I'm terribly sorry to hear about your wife.
Hope you two will find a way to cure and relief.

These are some of the neurosurgery departments in the Tokyo area referring to the disease, all Japanese unfortunately.
They're just out of google search, so you already might be well aware of this.
I'll ask some people at my workplace and get back to you if I'm able to collect useful information.

The eastern branch hospital of Tokyo Women's Medical University seems to have specialty outpatient clinic hours for trigeminal neuralgia.
http://www.twmu.ac.jp/DNH/annai/nouge_sansa.html

Showa University Hospital
http://www.showa-u.ac.jp/SUH/department/list/neurosug/explanation3/jannetta.html

NTT Higashi Nihon Kanto Hospital
http://www.ntt-east.co.jp/kmc/guide/neurosurgery/05.html

Dr. Shigeno of Kanto Rosai Hospital also has a page on this.
http://www.kantoh.rofuku.go.jp/hanasi/nougeka/nou5.html

Chikako
 

StuInTokyo

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Dec 3, 2010
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#5
Thank you all, and thanks for the various PMs we got, we are working on this and will beat it, and all the help we get is wonderful, thanks again!
 

FarEast

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May 25, 2009
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Yokohama
#6
I apologize in advance here, I know this is not bike related, but I also know the pool is deep here and I'm hoping someone can help us.
We desperately need some help.
My lovely wife is suffering horribly from "trigeminal neuralgia"
http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001751/
We need a good neurologist who knows how to deal with this awful problem. All of the typical doctors we have seen here in Tokyo just tell her that nothing is wrong, well they are wrong. This is often also called "The Suicide Desease" as many people cannot handle the pain and end their lives. How painful is it? Here is a quote from a medial paper on the desease " It has been described as among the most painful conditions known to mankind." that is no small potatoes. If you know someone in the medical community here in Japan that might be able to help, I really need it. I almost lost my love to Cancer, now this is taking the beautiful woman I married away, she is often clouded in a haze of either massive pain, or drugs.
Help!


Stuart - I will talk with the wife as she worked in neurology for several years and worked with some of the top people in the industry. I know some of the guys she worked with have retired now but I will ask her to see if she can get some names and places for referals.

Also one of the other things you may want to look into is heading back to Canada for a consultation on this as it might open other avenues and treatments not available in Japan.
 
Sep 2, 2009
5
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#7
I am really sorry to hear about this Stu mate.

While I don't have any connections in the medical world here in Japan to consult, I would like to offer my assistance in any way I can.

Like Tim said, don't hesitate.

You just need to ask.
 

StuInTokyo

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Dec 3, 2010
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#8
Everyone thank you very much for the support and offers of support.

Celebrate your good health, when you don't have it, trust me you will miss it.

We are slowly, painfully drawing some strings together that should, over the long term help out. The problem is the short term, it must be endured.

It is hard to describe or even share, but imagine your loved one hooked up to a torture machine that when it is turned up to full they have trouble breathing for a few minutes, their entire body goes rigid and shakes, and all you can do is sit and watch, and pray this attack ends soon. Sometimes they last an few minutes, some times they last for 30-40 minutes. She is scheduled for an MRI, in two weeks, the results back from that a week after, then and only then will the docs at the national hospital begin to administer any serious amount of drugs that will block the pain, now they are just giving out small dosages that do almost nothing. We are applying to the good medical TN outpatient clinic, even though they are saying an 8 week wait and we are working on other places and doctors too, I have a few irons in the fire, but these things take time, and every day, especially the night time is a very large battle.
Life goes on I guess, I'm just glad that we have each other to lean on, I understand that if someone was alone dealing with this that they might opt to kill themselves, this is known as the "Suicide Disease" after all.
I really do not mean to dump on the forum here, but thanks for the outlet and for all the good wishes, and all the PMs. I may yet call on some of you.

Stu
 

thomas

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Nov 1, 2005
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#9
Stu, I am very sorry to hear about your wife and hope she will find relief in medical treatment. Unbelievable she has to wait many weeks for an MRI. My best wishes to her and your family.
 

joewein

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Oct 25, 2011
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Setagaya, Tokyo
joewein.net
#10
I don't understand why doctors will not treat your wife's pain adequately while she has to wait for her MRI. You will need to keep pushing them!

Attitudes to pain treatment in Japan have improved somewhat over the years, but are still lagging. After a decade of increasing morphine prescriptions in the 1990s, per-capita use (mostly for cancer pain) in Japan in 2001 was still only 1/6 of what it was in Australia. Under-treated pain, especially amongst the elderly, is a major factor contributing to Japan's high suicide rate. Yes, some of this stuff can be addictive, but is that really worse than being dead?