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Is anyone else here suffering with Arachnoiditis ?

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5 years 7 months ago #9765 by di
di replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Hi Eliza,

My left ankle swells when I try to exercise more so than when I sit. My feet do become sore though. Almost like sharp pricks on the souls at times.

I've been using a circulation booster for 3 years now. I believe it's helped tremendously with my leg pain.
I have developed lymphedema in my left leg so my husband learnt the basics of how to do lymphatic massage from my Lymphatic Physiotherapist.

Have you been sent for a Doppler scan Eliza?

Di

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5 years 7 months ago #9774 by Eliza
Eliza replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Hi Di, my right ankle is swollen all the time! I had complications with surgery and when I woke up my right leg was dead or paralysed for about a day and including my horrific stomach pain ( alif, I think it was called,brain fog ATM) I had excruciating hip and ankle pain, so I was telling everyone For the first 3 days i wanted to die. 5 days icu then I was on a ward for 3 days then I left because my dear old mum passed away :( .... I was ringing the neurosurgeon everyday for 4 days because of the horrific ankle and hip pain I was in, so I was sent to a public hospital for a day and I kept the ankle iced and they feed me my own painkillers. I had a scan of the back and the only option was a morphine pump so I Left ....I felt they looked at me like a whinger and I didn't know if that was normal pain to have after that surgery. For many months my neurosurgeon kept saying to me to give it time 18 months though after about 6 months and only because I kept on complaining about pain and problems I asked my surgeon about something my sister inlaw read in my notes, something was cut and repaired, he was furious and he sent me to the vascular surgeon who assisted to move everything a side to operate. And he was upset too that i had been sent to him...his comment was that sometimes happens in surgery and it was repaired....i still don't know what was repaired!

Oh my, i could write a book....Yes I've had the Doppler and all was clear! I also had a nerve conduction test and I said to the dr I can't stand on my feet and he said of course you can't, though the surgeon said its within normal limits and the pain specialist said, its not! there's nerve damage...I'm about 22 months post surgery and my symptoms have got worse in my feet n legs,sometimes I feel as though I can't walk, the nerves affecting the muscles apparently. I have the most horrific pins n needles in my feet plus sharp shooting pain where I'll sometimes scream out of the blue because it feels like I'm being knifed. I just told another neuro surgeon that it keeps me awake and if I'm asleep I have nightmares because I think I'm being attacked by someone with a knife, he looked at me like I was mad.....

Anyway I'm about to have another scan to see if I have bony spur growths.....my calves also ache and contract nearly all the time and now when I walk I'm starting to walk with a bent over back and I hate that because I've been working so hard exercising to strengthen my core muscles and keep my figure and my posture straight...I am a tall woman at 5 ft 9 and I'm not overweight I think that's really important I don't want to carry extra weight to put more strain on my back. I have had so many different reasons or opinions from so many different dr's for my complaints that I'm just feeling like its really hard to move on and be positive without a definite diagnosis ...and I also feel like I've been fobbed off by nearly every dr I've seen. I would just like a decent nights sleep for once! I haven't had a decent nights sleep for 4 years now! So sorry for the rant hahaha and you only asked me did I have a Doppler! Maybe I should try the circulation booster it might help. I've been told its best to move on and return to work is the answer. My pain specialist did say he thinks I have a type of crps though I don't have the full criteria. I did have that 14 years ago in my hand but it went into remission.

I think the surgery was so traumatic that it set of this syndrome whatever it is!

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5 years 7 months ago #9776 by grappers
grappers replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Well seems they are related, as for swelling, yes and yes, I refer to my kankle, left ankle swells no matter what I an doing, left heel over sensitive which also goes to the souls of my foot, the ankle itself when swollen is very tender and sore. The lower half of my left leg has had no feeling since the accident, this was originally including my foot but that recovered it's feeling some times I wish it hadn't.

Don

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5 years 7 months ago #9785 by di
di replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
Gee Eliza, you've had a rough trot with it, that's for sure. ♥

I shudder at the thought of nearly agreeing to the 'alif' surgery for an artificial disc replacement. Thank goodness for my hip being sore and needing investigation first before further surgery could proceed.

I hope you get some answers soon Eliza. It was only after 16 months that I found the right 'fit' in a specialist. By that I mean someone highly qualified in their field, someone with compassion and they definitely need to be hungry to find the answers for you and themselves!

I have a regular 6 - 8 week appointment with my neurologist. He discusses my case with many of his colleagues because I'm very much at the forefront of his mind due to frequent follow ups.

~

Don, FBSS and Arachnoiditis do have very similar characteristics indeed.

The swelling in my leg isn't painful or sensitive to the touch at all.
I understand that what you're saying... numbness can sometimes be the kinder affliction unfortunately. :(

Di

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5 years 7 months ago #9805 by di
di replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
I've been taking my time to read this wonderful, supportive forum.
Still a lot of reading to do but I did come across a post from Mary that also explains why I'm mostly positive and manage to stay focused on what I can control and not what I can't.

Here's the extract from one of Mary's post that I'm referring to;

There is an excellent book that explains chronic pain rather well and gives you some ideas on how to manage. I don't have any connection at all to the authors, but I do manage my own pain using the principles in the book. There is an electronic copy available from here:

www.noigroup.com/en/Product/EPBE

There are a lot of people on the forum that will no doubt speak with you about their experiences. You won't get any discrimination here because we all understand exactly what you are going through.

Mary


A wonderful suggestions Mary.
I read and re read this book continually... It's written by two Australians than speak in a no-nonsense way.

I highly recommend 'Explain Pain' by Dr Lorimer Moseley and David Butler.

Di

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5 years 7 months ago #9806 by Mary
Mary replied the topic: Re: Is anyone else here suffering with Arachnoiditis ?
I should also add that I don't have any connections to the authors either! It's great to hear of another person who has derived benefit from the principles in it. It just seems so sensible to me. I have had that book for some years and a couple of years ago, I found a physiotherapist who worked through it with me. It was a big help. She retired last year and I am seeing another one who also has a very good understanding of neuropathy. She is helping me with my pacing (I tend to overdo things big time at this time of year!) so that I can actually get to Christmas without having to spend Christmas Day with rotten pain levels:)

So far I am not doing too badly, although I did fall in a hole a couple of weeks ago. Fortunately I have managed to get back to "normal for me". Of course, this is all made harder by the total unpredictability of CP. You can overdo it one day and be sure that you will suffer, only to find that you are ok; then you do something that you think is within "normal" boundaries, only to suffer big time.

I am sure that everyone here can relate to that!

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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