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Arachnoiditis Message Board
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Old 03-10-2010, 05:58 PM   #1
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Arochnoiditis

Can anyone tell me anything for relief of Arochnoiditis, along with two discs, L5 and F1 problems, which my son as just been diagnosed with, and being unemployed now with this, his insurance ran out, and cant get medical attention, leaving him with unbearable pain most of the time. The information i get on line is not at all looking good for his future. Any help out there would be greatly appreciated, as I am beside myself with worry about the present and his future.
Thank-you.
A worried Mum.

 
Old 03-10-2010, 07:20 PM   #2
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Re: Arochnoiditis

Irena,

I really feel for you and your son.

Arachnoiditis is a very serious and almost untreatable condition which causes unrelenting severe pain. If your son has COBRA available to him I would suggest you try to find a way to pay for it.

I'm not sure how old your son it, but arachnoiditis is a condition which makes almost every person who applies for SSDI automatically eligible for it, so be sure to either have him apply if he hasn't already or make a consultation with an SSDI attorney (make sure it's an attorney, not just a service that files for disability for you). Attorneys can do appeals, the others can't, and they both get paid the same.

How did your son get this? How old is he?

He will definitely need ongoing medical care and especially medications to treat his condition.

I'm sorry you and he are going through this, but be sure to be strong for him and give him a voice to ensure he gets the treatment for his condition.

 
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Old 03-11-2010, 08:18 PM   #3
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Re: Arochnoiditis

Hello Brendacks1,
,thank-you so very much for your heart felt response. I was quite touched, when I was feeling so low. Do you have personal experience with this Arochnoiditis, it was totally new to me, and friends I've mentioned it to. My son is 45, and to have what you describe, is heartbreaking, as he has gone through all of his savings to support himself. To answer you're questions I dont know how he got this but around 2005 he had back surgery for his L5 and F1 discs he injured, then later had Steroid injections. It just seems to go from bad to worse. Now to be diagnosed with what you have explained, with not much recourse for him to get any better, is too much to take in right now.
I shall explain to him about the attorney,does this always entail an attorney to deal with the SSDI. Again i want to thank you. God bless.
Irena.

 
Old 03-11-2010, 10:14 PM   #4
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Re: Arochnoiditis

Irena,

I don't have arachnoiditis, but I have had several back surgeries. Arachnoiditis is a rare complication of having back surgery, spinal injections, or even an epidural block like some women have during labor.

It is rare, but it does happen and it unfortunately has happened to you son.

In my opinion, your son's best next move would be to talk to an SSDI attorney. They don't get paid if they don't win. An attorney could help your son file for SSDI and increase his chances of him winning with his initial application instead of having to wait 2-5 years for a hearing.

Glad I helped lift you spirits today! Even though our bodies may not be perfect, life still isn't so bad.

 
Old 03-12-2010, 09:22 AM   #5
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Re: Arochnoiditis

Thank you again and will pass this on, you helped me understand what he is going thru' and why!
Take care, and all the very best, you have the right attitude, and I hope I can pass it on to my son.
God Bless

Irena.

 
Old 03-12-2010, 02:39 PM   #6
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Re: Arochnoiditis

Unfortunately, there isn't much available to help with the pain caused by arachnoiditis. There are some studies that recommend spinal cord stimulators but there are also ones that say it does not work in about 50% of the cases and most arachnoiditis sites recommend not doing or allowing anything invasive to be done to someone with arachnoiditis.
I deal with it as well, so I know how difficult it can be to find treatment for it, at least treatment that helps.
It can be progressive, so it depends on the severity of it now, there are some medications which might help, Lyrica, neurontin, some of the old tricyclic anti depressants sometimes help with neuropathic pain, which is difficult to treat or topamax, which needs to be carefully titrated if he decides to try it.
I wish you both well,
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Old 03-18-2010, 02:18 AM   #7
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Re: Arochnoiditis

My cousin has archanoiditis and after 17 years of misdiagnoses and mistreatment, living in a wheelchair... my brother got her an appointment at Johns Hopkins... she finally got an opiate pump implant and is living a semi normal life.

So that might be the way to go... I've been trying to get her to log on here and share her experiences but being a mom and now grandmother she has a pretty full life.

~Myo

 
Old 05-21-2010, 03:25 PM   #8
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Re: Arochnoiditis

Hi -

I just received my MRI results stating 'suggestive arachnoid scarring" and also have an S1 nerve root surrounded by scar tissue... but my L4 and L5 are matted. I am 45, had 2 surgeries on my L5-S1. The last surgery was 2 years ago. I have been in PM ever since. I would like to note that I have also had 7 caudal injections and the last injection was 4 shots directly to the spine (so 11 in all) - all in the last year. I know that the scarring can be from either an infection at the disc, the injections, or the surgery... not looking to place blame since it just looks like I drew the short stick (implying it was just bad luck).

I have the back pain that I have had all along, but now I also have sharp electrical shock pain that just comes and goes with no reason or effort on my part. take a step or turn and it happens. It leaves a terrible ache once it stops. I have pain in my thighs, back of legs, burning in foot, numbness and tingling in both...twitching in my left leg (thigh.. it's weird, the skin actually moves) and also have this constant feeling like a bug is on me.

It's bad enough having a disease with the name of a spider, but to feel like bugs are always on my legs is over the top! I HATE BUGS!!! Truthfully, it's almost comical that I end up with this... The pain is bad.. but the torture of thinking a bug is crawling on me and then having to explain to people what I have and they think it's a spider thing! AAUUGGHH! LOL

I am worried that this is a progressive disease... I am a mom and it's already tough and unpredictable.... but keep the humor and smile every day. I see people all the time who are worse off than me. As I told my best friend when I got the report - it could have been worse, much worse.

good luck to your son, too.

Last edited by mummy3too; 05-21-2010 at 03:28 PM.

 
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