From: Ursula Darker <ursuladarker@...>
Subject: RE: [Arachnoiditis] I wanna talk with ppl with arachnoiditis
To: Arachnoiditis@yahoogroups.com
Date: Thursday, 20 November, 2008, 11:40 PM

Hello to All, It is good to see the Group being used again, and it is a pleasure hearing from fellow "Arachnoiditis Sufferers" instead of the usual unrelated durge I have received from this site! I am saddened to see people are still becoming "victims" of this insidious disease, for many years I campaigned and held Arachnoiditis Awareness events to bring to the attention of the Public, Politicians and the Medical Profession the causes of Arachnoiditis and the lack of care and support for Sufferers and their families. Sadly the Arachnoiditis Trust UK no longer exists, and also the Arachnoiditis Support Group I ran, has had to close, my health has deteriorated and I am no longer able to commit to physically turn up at the venue and then take the 2 hour meetings, I tried to get others members of the group to take it over but their was no takers! The internet is a great way for "us" to keep in touch and be of help to each other, I do hope we all keep the group going and in turn see each other through our "rough periods" I am having a few problems, my upper back is causing me a lot of pain and I'm hoping to have an MRI soon, and hopefully have some answers. From experience I know there is very little that the medical profession can do, I won't have any invasive procedures as I know they will only make matters worse, over the years I have gained a fair bit of knowledge, at the age of 20 I had a mylogram using a very neurotoxic dye called Myodil, unfortunately I was to follow the same route as many others, further mylograms using both oil based and water based dyes, in between spinal surgery, then the "good old" epidurals to treat the chronic back pain, well 31 years later I am much old and much, much wiser. My advice to my fellow AAS is this, where ever possible, avoid having any invasive procedures, as this is only adding insult to injury, there is no known safe treatment, surgery, in the end will only make matters worse. It will be a case of hit and miss trying to find medication to help combat the pain, then in time as your body / system gets used to the medication you will need to change or "up" the combination of drugs. Our type of pain is classed as Neurogenic, it is very difficult to "treat" but don't give up and try not to get depressed, and depression compounds and magnifies pain. With the love of God and the support of Family, Friends and members of this forum, we will have a life, I know it is difficult to be positive day in day out, but try and when all seems to be doom and gloom talk about how you feel, if I can be of help to you please contact me, I promise I will do my upmost to "be there for You" I wish You all a pain free time.

Gods Blessings. Ursula UK .

 

 

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From: Arachnoiditis@ yahoogroups. com [mailto: Arachnoiditis@ yahoogroups. com ] On Behalf Of MELISSA HARNER
Sent: 20 November 2008 19:47
To: Arachnoiditis@ yahoogroups. com
Subject: Re: [Arachnoiditis] I wanna talk with ppl with arachnoiditis

 

Hi Brianna,

 

I have been diagnosed witharachoiditis for 8 years, yes life is difficult.  I have had 4 surgeries, from the initial lower lumbar surgery in 2001 laminectomy, fusion, spinal cord stimulator in 2005 and a revision of the that stimulator in 2006.  I have also had the epidural injections, without any luck to trying to burn the nerves in 2007, without any relief.  I know it is difficult to function and people do not understand your life unless they have experienced it personally.  Well, I am at the point of just going to pain management every month with a host of medications I take daily to help function, but this is about as good as it gets.  Feel free to email me.  

You are not alone.  Where are you and your husband located?  Melissa

----- Original Message -----

From: Brianna

To: Arachnoiditis@ yahoogroups. com

Sent: Monday, November 03, 2008 3:02 PM

Subject: [Arachnoiditis] I wanna talk with ppl with arachnoiditis

 

Hi,
My name is Brianna, my husband has had arachnoiditis for 4 years. I
want to talk with other ppl with this disease to see what life is like
for others. Life sucks for us and we feel totally alone, no one around
our area knows anything about this disease.
thx
Brianna