The Aword

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Hello I'm new!
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TOPIC: Hello I'm new!

Hello I'm new! 3 years, 7 months ago #1461

Hi I'm new!

I think this is the right group/forum I should be joining. I was diagnosed last week as having an arachnoid cyst at S2. I have tried researching arachnoid cysts, tarlov cysts and arachnoiditis but I'm unsure of the difference between them all. I'm working my way through websites at the minute so I'm hoping I've joined the right group in the meantime.

I slipped over in a supermarket in November last year and ever since I have been in agony. I took myself to A&E 2 weeks after the accident and was told I just had bruising, but then 2 weeks later I went back to my doctor only to be told I had a fractured L5 Vertebrae (hospital were supposed to call but didn't). I ended up going back and forth with no answers and still in pain 4 months after the accident, so I paid for a private stand up MRI last week and that's when they found I had a cyst at S2.

The doctor has said it could be incidental that I have the cyst, however I have pointed out that the fracture should have healed and all the doctors have said I have no issues with SIJs etc, so it leaves me with nothing left but this cyst.

My doctor has given my disc to radiology at the local hospital, so I am hoping they will take me seriously, but I am prepared to have to pay for private care so I can get back to work (I've been off since December).

So thats me!

Re: Hello I'm new! 3 years, 7 months ago #1462

  • helen
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Its quite common to find Tarlov cysts naturally occuring on nerves in the sacrum. I have a large one that has eroded the bone.

I can't help you with arachnoid cysts, but please learn from my experience - if the MRI results don't show any pressure from cysts (or anything else) directly onto nerves then leave well alone.

I'm not surprised you're still in pain after your accident and you weren't alterted to the fractured vertebrae - which I would imagine requires bed rest for healing.

Please avoid any invasive pain treatments like injections around the nerves or steroid epidurals. Take oral pain relief instead

I can only advise and hope rest will aid healing. Good luck with your MRI results.
The following user(s) said Thank You: ann

Re: Hello I'm new! 3 years, 5 months ago #1551

  • Dayton386
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Hi,

I am a new forum member. I believe my daughter, age 46, has a severe case of Adhesive Arachnoiditis. She had oil-based myelograms in both 1979 and 1980. She developed significant symptoms after an exercise injury last September. She is in constant back/hip/leg pain and has lost her ability to walk. She cannot shuffle more than a couple of feet as her knees slowly buckle. She also has to self-cath about 50%. I have to move her to the toilet using a wheelchair. At night, in bed, she is often in so much pain that she needs our help to rotate from her hip to her back.

Re: Hello I'm new! 3 years, 5 months ago #1556

Hi isgoodchild I am so sorry for what you have endured. don't just leave it all to the medical profession, make sure you get on computer and find out all you can and educate yourself. don't agree with anything until you research because you can do things and end up worse. I am not trying to turn you from your doctors but just find out all you can. I was never told anything about having myelograms, I was never told what dangers there are in having epi dural steroid injections. I was diagnosed with adhesive arachnoiditis with calcification 1984, I went on to have four more operations including a spinal fusion plus a scaro iliac joint fusion. I was in constant agony, someone lightly bumping my bed sent my body into such back and leg pain as if it was going all through my body. I was so bad my spinal canal was bleeding. I wish someone had told me to educate myself so I could comprehend and ask the right questions to my specialists. Take care of your self my thoughts are with you.

Re: Hello I'm new! 2 years, 11 months ago #1598

hello new here

Does anyone have know of a radiologist in the United States

Re: Hello I'm new! 2 years, 11 months ago #1602

Hi, your daughters diagnosis of AA and the problems she is having with her knees buckling and not able to walk, is familiar to me. What is important is to get her in to hydrotherapy and keep her muscles functioning. Even if the pain continues in the water, it is so important as she will become so weak so quick with AA. It may take years, however it is possible to
improve even slightly if she keeps her muscles working. Whatever movement she can do will increase circulation which will help rid toxins and with time, any improvement is good.
I spent 7 years like a prisoner in bed, fighting to get to the toilet. It was hell to have a shower. Specialists told me to remain in bed, get up and touch the wall twice a day, to keep pain to a better level and not try to walk further. It didn't matter what I did, the pain was absolute agony, all the time. What helped me was hydrotherapy, getting weak muscles in all of my body stronger, which helped when I simply stood. Try to remain positive........ Use hot packs when pain is severe, it may do nothing to the pain level but it will help the muscles relax a bit. Never just focus on pain....reading, poetry, tele what ever to get the mind off pain.
So many of us were recipients of dangerous toxic treatments and investigations in the 1970's - 1980's I live in Australia and even today Adhesive Arachnoiditis is not a problem doctors have to divulge. Knowledge is empowering, I can understand your daughter may not be in the frame of mind to begin to gather knowledge about her diagnosis or medications or any treatments suggested, so if it is possible, you get on the computer and learn for her. Print the information out and keep a file. My thoughts are with you and it is so sad to hear of another sufferer.
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