It's time to let you know

General General CMT Discussion
1

I have been struggling with excruciating back pain again, it is the reason for my recent absences. It has gotten so bad, I went over the last MRI reports,seeking a better understanding. One thing I noticed that were never really addressed were perineural and tarlov cysts.

These cysts are comprised of spinal fluid, due to tears in the 3 layered sheath that protects it. They are located at the root of the spinal nerve. One is mid back, one lumbar and one on the sacrum. And the one on the sacrum, is the worst, I think.

They believe these are caused by extreme trauma, epidurals and Sjogren's syndrome is one of the connective tissue diseases listed. So I have all three possible causes.

These are rarer than rare, and there are only about 7 neurosurgeons in the entire world who deal with them, and 2 possible procedures. The most recommended is aspiration and glue, where they suck the spinal fluid out and fill the cyst with glue. Problem is they always come back, perhaps not in the same place. the other option is to operate, and there are 3 neurosurgeons in the world for this. There is a Dr who has offices in TX, KS and the Isle of Cypress. He claims to be able to remove the cysts and repair the spine so that there are no more leaks. My husband and I are thinking that the co-pay on that would most likely be more than all of our assets!

So first thing is a more recent MRI, as the last was a year and a half ago, then get in to see my Doctors choice. Luckily there are 2 who do the aspiration and glue withing 70 miles of me, one at Hopkins, one at St Lukes. He seemed to like the credentials of the one at Hopkins.

Because these are rarer than rare, I printed off all info I could find on this for my Internist, as it is my understanding that these are barely mentioned in med school, and even neruosurgeons know just enough about them to run at the mere mention of them!

My Doc told me today that he always attributed this kind of crushing pain to the place my spine that is 'disconnected', and the worsening spinal stenosis. That these alone can be a good reason, but we needed to address the cysts.

http://www.tarlovcystfoundation.org/tarlov_cyst_information0.aspx

I hope this can happen soon as the pain and the pressure are just about beyond endurance.

It was time I let you know why I have sometimes not been here for days, it is not that I'm losing interest, and certainly not because I don't care!

I'm not saying goodbye, just letting you know what's up, in case I'm not able to be here. So please keep the group going, please don't let it go stagnant again. Please start posting more discussions. This group is worth having and worth keeping!

Wishing you all well,

Susan

2

Dear Susan, I hope you can get to a specialist soon who can help take care of the cysts and have you feeling good again. We have missed you!

3

Wishing you very best wishes Susan - I think most of us know how difficult it is to be 'on the ball' every day. I really do hope things start to look up for you and will send loads of healing to you. Take care xx

4

I hope that the specialist will see you soon and will proceed (successfully) with the treatment option that will alleviate your pain. Best wishes for a successful endeavor. Prayers going out for you.

5

I will keep you in prayer Susan and very glad you shared; Many of us have issues we don't always share b/c we mainly do not like to be whiny or come across this way, but we do understand now and will miss your input but admonish you to take care of you for now and we will be working to keep this group together in your absence! God bless and be with you and praying for HIS guiding hands for your repairs and healing!

6

I hope you feel better soon. I know we will all be praying for you! Karen

7

Susan, Praying for comfort and an appropriate conclusion to this situation you are dealing with.

8

Thanks so much everyone! Your good wishes and support mean so much to me!

9

Sorry to hear the news. Will be praying for you and the group. God is with you and will not leave your side.

10

Dear Susan,

I've just posted this (below) in my discussion. It's an extract about excruciating back pain. Yes, my condition was simpler than yours but I understand what you're going through. The apparent loneliness can be difficult. So I hope this makes you feel you're not alone. I had an operation at Queen's Square, London and, with physiotherapy every day, have completely recovered. But I'm not trying to blow up some false hope balloon - you have to live in the present, not thinking, not hoping, knowing that the divine gift you have of a brain is still there and that others are with you.

'20 years ago I had a lower back slipped disc which laid me out for 4 months ending in an operation. The pain was worse than this. Even with pain killers I was getting 25 mins sleep a night max. Crawling to the toilet. Completely immobile and painful enough to be crying without noticing it. I learned then a) to count because you know it will ebb and flow so present pain will peak then ease - the task is to hold out b) to live inside the pain as if you were an underground miner or a swimmer planning to pop your head up sometime. A Trojan Horse approach. c) your psychological vulnerability increases so you're an organism turned inside out. It's very exposing.'

I also learned that we are stronger than we think, as you are, I'm sure. To go through an acute condition deepens one's understanding of all those people who are suffering acute and chronic pain.

I also learned that you have to laugh, in a way! When I worked with paramedics I noticed that their knockabout humour ('Isn't this just crazy?') helps to deflect from the suffering. Dark humour sometimes, but creative and beautiful - as everyone is who goes through this stuff. The super-athletes are the people who struggle with disabling illness. They are the heroes - like you.

11

You are so right, I especially relate to the humor! When my mom fell down the stairs and could not get up, (broken hip) we finally made her realize that we needed to call the ambulance, she FINALLY agreed, they arrived, and the first thing the handsome young man said to her was, "Are you trying to jump down the stairs in one go, again?" Of course that broke the tension, and even my mom laughed!

12

Oxytosin,

Glad you got through the surgery and are better for it. Just imagine how people suffered before there was surgery! I know I growl and grumble about pain and function, but am very fortunate to have the resources that I do! I am also very fortunate to have the support of all of the wonderful people of this community.

Thank you all!