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Is anyone else here suffering with Arachnoiditis ?

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5 years 7 months ago #9727 by di
di created the topic: Is anyone else here suffering with Arachnoiditis ?
Hi everyone :)

Thanks for the warm welcomes I've received in the Good morning / afternoon thread over the past two days.

You sure know how to make a gal feel welcome and confident to post here.

The reason I found this site was because I'm searching for information about the Ketamine infusion treatment.
My neurologist is organising a 5 day in-patient booking for me as we speak.

I have lower spinal Arachnoiditis.

I've been suffering with this for 3 years since I had L5-S1 microdiscectomy surgery.

When I entered Arachnoiditis in the search engine here, nothing came up!
I have read all the feedback about the Ketamine Infusion posts and taken it all on board.

I'm actually more confuzuled than ever now!!! :silly:

LOL... Di

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5 years 7 months ago #9729 by Mary
Mary replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Hi Di,

I don't think that we have anyone here who has Arachnoiditis! That is why nothing would have come up in the search. I have read quite a lot about it during the early days of my CP because I thought that my symptoms were the same. However, a few years ago I had a routine MRI because I had to change neurosurgeons (the one who did my surgery retired) and they said that I don't have Arachnoiditis.

That was a relief, but it still didn't give me a definitive diagnosis. I have since learned that I have a thing called FBSS - failed back surgery syndrome. It's not a good term really because the surgery was actually quite successful but something happens during the healing process that leaves the nervous system sensitized and voila - CP.

I do know someone who has Ketamine infusions about every 4 months though and she gets very good results from them.

Mary

Not every day is a good day, but there is good in every day.

"“It’s delightful when your imaginations come true, isn’t it?” ― L.M. Montgomery, Anne of Green Gables

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5 years 7 months ago #9746 by grappers
grappers replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Never heard of Arachnoiditis until this post, interesting though I too have had 2 failed back surgeries, A lot of the symtoms for this condition are relevent to my case, apart from bowel and bladder problems. I was wondering whether failed back syndrome runs on the similar lines depending on who you see for a diagnoses.

Don

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5 years 7 months ago #9749 by GarfieldRules
GarfieldRules replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Just wanted to say hi and welcome Di. I personally have not heard of Arachnoiditis. Sorry to hear you have been suffering so much. You have certainly come to the right place regards Ketamine Infusion posts. There have been quite a few I have read over the time I have been a member here. Hope they help. Take care. xx

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5 years 7 months ago #9758 by di
di replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Hi Mary and Don,

Wow... I've not heard of FBSS before but then... I only heard of Arachnoiditis for the first time last week as well!
I'm feeling a little silly right now. I just never had pushed for a name to my pain before now.

Actually it was my husband that said to my specialist; Family and friends keep asking what exactly is it that Di has, what's the term for it? That's when he explained the condition, recapped my symptoms and confirmed to us it's 'Adhesive Arachnoiditis'.

Don, I can't answer your question as I'm not ofay enough with either condition myself as yet... but I will be! :)
I did find an interesting carefore assessment worth reading;

www dot careforce dot org dot nz
(not sure if I links are allowed here)

This is a section from that site;

Define arachnoiditis in relation to failed back surgery
syndrome (FBSS)
Example response
Some people develop arachnoiditis after FBSS. Failed back
surgery syndrome (FBSS) occurs when a back operation has
resulted in no improvement in the person’s experience of back
or leg pain, and no – or limited – recovery of function. If the
original symptoms return, resulting in further surgery, this is
known as FBSS. It has been suggested that as many as 15% of
people report some form of arachnoid scarring following FBSS.


Mary, thanks so much for the positive story about the Ketamine infusion.
I'm learning just being here.

Di

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5 years 7 months ago #9760 by Eliza
Eliza replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Hi di and welcome I just did a search and I founds heaps of info on Arachnoiditis , I was wondering do your feet swell when you sit? And I hope the ketamine infusion helps with your pain. My feet n calves are so painful after my lower back double spinal fusion. Take-care :cheer:

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