People like me?
 

Iv been looking all over to try meet some others that have same thing up with them. Mainly to just have someone to relate to and understand me.
A quick basic explanation of my condition is I have spinal tethering, cysts and its caused major pain in lower body and means spend lot of time not able to do much. Life is mainly lay down get up move then repeat.
Hopefully can meet some others that get me.


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Welcome Steven07. :Wave-Hello:

Thx [emoji4]


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Hello Steven,

Welcome to the NeuroTalk Support Groups.

You could check out the forums below...
Spinal Disorder & Back Pain Forum

Chronic Pain Forum

It is highly likely that there would be posts from members with spinal cysts as well.
Are they Tarlov Cysts or something else?
Tarlov Cyst Forum

There is also the
Forum Search Feature

You can type in keywords and find older threads and posts that way.

Take care there.

Hi Steven,
I don't have the same Cysts (Arachnoid in my brain), but I have neck, spinal and neurological issues which - along with other physical and mental conditions - leave me leading the same life as you. It's basically hanging around, waiting for the next cycle of meds to get another couple of hours of easing.
What you have done now is you have found a place filled with sympathetic peers who can understand from their own experiences and will support and entertain you as you explore the Forums. I came here first 4 short months ago and have been Blessed with receiving far more than I am able to give.
I understand your frustration at the life we are forced to live and if you ever want to talk about anything - or simply vent - I am always about.

Dave.

Yes, Steve....there are more people like you then you can imagine. As Dave so eloquently put, this is a very helpful and understanding community here. I generally hang out on the Chronic Pain forum but there are many forums that target more specifics health issues. Also, there are forums for emotional and spiritual support and a light hearted ones for jokes or plain old social chat, all of which you can do from a reclining position and be a good distraction from what you are dealing with.

Welcome Steve....Diandra

Steve,

Not sure whether this is in the same category as "spinal tethering, cysts. But, when I had my spinal fusion/laminectomy (L4-5) over 8 yrs. ago, the surgeon said he had #1 never seen such a "red angry nerve" (being compressed) and #2, also had never seen anything like the several cysts going in an out of the lumber spine vertebrae areas like I had.

I still experience a lot of spinal pain as well as peripheral neuropathy but one thing I know for sure is to do my best to keep moving and doing some light household tasks. Several time a day, I do need to sit in a comfortable with arms so as not to put too much pressure on my spine as well elevated. Lidocaine patches (prescription only) are very helpful for the spinal pain.

Have you had any Ct scans or MRI's?


Gerry

Yeah I hav had 3 mri scans and a 14hr op. The Nero sergons said to me they had not ever seen what had happened to me and one even came up from London to take part in it. It was a huge mass of cysts , draining them left more damage to the tethering.
Yep I do a little of things everyday to help with pain. I can't just lay there I hav to always move about a little coz longer in one position the more the pain creeps up higher.



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Steven,
Appears you have had your share of surgery. Seems both our surgeons have never seen all these cysts residing in the lower spinal area.

Actually at times, laying position can be more painful. Changing to sitting on comfy lounger helps. But moving and getting up walking about a bit must continue or the inability to do so will eventually not be a choice.


Gerry

Cheers. Yeah I feel like always wanna vent but even stress or emotions make the pain flare up. It's like a nightmare that's got no end. It's been like this for 9 yrs now and although I'm kinda used to it, it's still frustrating and hurts.
Mainly because was fit and "normal" until this just happened.
Yep life is very repetitive doing same things all based round med times. And the fear of doing things could flare me up .
Iv become quite isolated as all old friends move on and been round people that knew the old me just makes me feel worse. I need people that know the new me.


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Steven,
A lot of us are singing from the same Hymn sheet. Friends - even family or partners - cannot cope with the 'new' us. I have been on this pain journey for 25 years this year, although the groundwork was laid before that.
Try hopping around the Forums every now and then to break your day up, share your experiences, anything to stave off the monotony.

Dave.

Steven,
Yes; some days better than others; but always afraid to do something that just might add to the already painful issues, as well as the ritual of med times. Not easy to accept the person we have become.

Many of our family/friends have difficulty dealing with our not only being able to do things we use to do with them; but frequently being on a "downer" is often uncomfortable for them. They really don't know what to do or say

I have found when I can accomplish doing my best to be more upbeat, my family/friends are wanting and really grateful when I can be with them or they can be with me for holidays, etc. Whether it's reading, listening to music or watching an enjoyable tv movies, etc. can put me in a better frame of mind. Sometimes it is just a good feeling knowing maybe on Neuro Talk I may have helped make someone's day.

As Dave mentioned; check out different threads on NeuroTalk (NT). You may be able to pick up on some ideas or can offer some info to others. This often helps prevent our mind from going a bit dormant when using words, thought process', ideas , etc.

Glad to have you with us.


Gerry