Invasive procedures and getting worse

[judyinthesky]

Hello!

I have severe ME and am bedbound.

I also have a spinal fluid leak situation due to a problematic lumbar puncture. I am not self healing since weeks and the two conditions really add up.

Now I have to decide about a potential invasive procedure that is coming up. Epidural blood patch.

I am worried about any further decline due to mental and physical stress. Particularly since my nervous system doesn't seem to like any interference.

How does one decide that? How do you?
There are people who have ME and are doing surgery, but they probably haven't been severe?

Any thoughts and sharing of stories welcome.

 

[YippeeKi YOW !!]

I'm not a good source, with only very specific knowledge, relating to a pretty nasty spinal surgery some years ago.

Am tagging in some members who might either have some input, or know who to tag in that does.

Hang in ... that's a hard hard place to be. If my surgery hadn't been a life-threatening emergency, and I'd have had a choice about it, I'm not sure what I would have done ....

@andyguitar , @Pyrrhus , @Rebeccare @Hip , .... oh crepe, I'm forgetting some other important options here .... will come back as soon as they pop back into my mind ....

 

[judyinthesky]

I'm not a good source, with only very specific knowledge, relating to a pretty nasty spinal surgery some years ago.

Am tagging in some members who might either have some input, or know who to tag in that does.

Hang in ... that's a hard hard place to be. If my surgery hadn't been a life-threatening emergency, and I'd have had a choice about it, I'm not sure what I would have done ....

@andyguitar , @Pyrrhus , @Rebeccare @Hip , .... oh crepe, I'm forgetting some other important options here .... will come back as soon as they pop back into my mind ....

So how was your surgery? (

 

[YippeeKi YOW !!]

So how was your surgery? (

Very long, with a whole crepe-load of general and spinal anaesthesia for almost 5 hours, hospitalized for a little over two weeks after, and preceded by a truly horrible spinal tap.

The operation itself was of course painless, cause I wasn't really there, but they had to sandbag my back with several hundred pounds on each side to make sure that I didnt so much as twitch while they were working in the spine .... it took years to fully recover from the tearing and stress on the muscles, and I still get back aches.

But it totally alleviated some horrendous, very serious pain I was having, as well as creeping paralysis on my right side, and I'm grateful to the neurosurgeon to this day. I was in agony prior to that ....

Do what you have to do. It;s really the only option we have in many cases .... from what you describe, you may be in one of those gotta-do-it-no-matter situations, and if it's any consolation, while I have very thin respect for most Drs, neurosurgeons and orthopaedic Drs are the exception. They're generally no-nonsense, not very hand-holdy (there are exceptions), and extremely dedicated to their work and the best outcome for their patients.

I hope this helps. I think I can almost feel the kind of pain of uncertainty you're in right now. Hopwfully, you'll get a lot of other helpful, hopeful, supportive responses. Cause going thru the " ...should I, shouldn't I, what if ..." is really hell

 

[judyinthesky]

@YippeeKi YOW !!
You know. I made myself worse with medical procedures: thyroidectomy, vaccination, lumbar puncture. I would instantly do it otherwise.

Very practical issue is that I am so severe that I'm crashing all the time from even talking for five minutes etc. So yeah, it is a bit of a catch 22.

 

[Hip]

How does one decide that? How do you?
There are people who have ME and are doing surgery, but they probably haven't been severe?

You might like to join Jen Brea's ME/CFS craniocervical instability Facebook group which covers things like spinal fluid leaks, and procedures to fix these leaks. There is a lot of expertise and experience there.

 

[judyinthesky]

You might like to join Jen Brea's ME/CFS craniocervical instability Facebook group which covers things like spinal fluid leaks, and procedures to fix these leaks. There is a lot of expertise and experience there.

Thank you already posted there!
More the symptoms specifics.
Right now it's an issue of being weak etc, maybe I could post this again, right.
Gosh having so many issues

 

[Jyoti]

There are people who have ME and are doing surgery, but they probably haven't been severe?

@judyinthesky --the people I know and know of who have had or are waiting to have surgery have been severe. Extremely severe, in fact. I suppose that condition can answer some questions---if I can't go on as I am, then what is to be lost by trying surgery? But you seem to be trying to decide between not taking the chance of losing what little you have to another invasive procedure and hoping that this one will somehow go differently.

If I were you, I would also start a thread here to see if anyone has epidural blood patch experience to share. I know you asked in the first post of this thread but the title would not necessarily alert anyone with that experience to read it. Or...we could change the title of this thread if you'd rather. (Let me know.)

In any case, sending you lots of good wishes and complete faith that you will find the right path.

 

[judyinthesky]

@judyinthesky --the people I know and know of who have had or are waiting to have surgery have been severe. Extremely severe, in fact. I suppose that condition can answer some questions---if I can't go on as I am, then what is to be lost by trying surgery? But you seem to be trying to decide between not taking the chance of losing what little you have to another invasive procedure and hoping that this one will somehow go differently.

If I were you, I would also start a thread here to see if anyone has epidural blood patch experience to share. I know you asked in the first post of this thread but the title would not necessarily alert anyone with that experience to read it. Or...we could change the title of this thread if you'd rather. (Let me know.)

In any case, sending you lots of good wishes and complete faith that you will find the right path.

Good idea!

 

[YippeeKi YOW !!]

You know. I made myself worse with medical procedures: thyroidectomy, vaccination, lumbar puncture. I would instantly do it otherwise.

Oh brother, I really do. Know. At least my small slice of all this.

I think @Jyoti's insightful, thoughtful, totally right-on post is the absolute best option, whether you start a very SPECIFIC new thread, or just change the title of this one. The more specific you are in the title, the better the input you'll get.

Wish I could have been more help, and sending deep empathy and any further support I can think of down the road ....

 

[judyinthesky]

Thank you so much guys