Second Surgery

[dani43946]

I hate that smiley face pain scale. Because people who have and live with chiari have a high pain tolerance. So when they ask you, "on a scale of one to ten, what is your pain level?" I just look at them and think to myself, "you have no idea what pain is..." Ughhhh....ok...now that I am done ranting about the poor smileys....my point is....how do you actually know how much pain should take you to the hospital, the ER, or warrants a call to your NS when we live with this each day?
After my surgery in May, I had pressure problems, the CT showed a small leak, and I had a LP to lower my pressure.
The pain became so unbearable that he did an early MRI. This showed a leak out of one of the infected staples from my patch. The rip was only the size of a pencil lead. Thats it. The csf fluid built up, It was 5x bigger than the week before. He immediately scheduled surgery two Thursdays ago (I just now got on here, sorry). My neck and shoulders were killing me and my temp before surgery was 104. The NS said that my leak was about five inches deep in my neck and gushed out as soon as he opened me up.
I am now what you would call 3/4 of a zipper head...lol.  But I am feeling better. No more pressure, no more headaches, no more vision loss and no more temp. I am just hoping that the pressure and the leak stays away. He told me to do nothing for two weeks to make sure the pressure or the leak does not come back.
My feeling is the leak is what was causing the pressure. He took care of the leak and everything is fine. He is not all that sure. He thinks moving my neck too early, or a faulty staple, or intracranial hypertension could be the culprits.
So I guess I sit here and wait. And hope and pray. Because if either or come back, he is shunting me.
Just wanted to give everyone an update.
Talk to everyone soon.
((Hugs))
Dani
P.S. My scalp is burning (like someone is pulling my hair) at the top right of my incision. My hubby says it is where the new incision is and where they pulled it together to stitch it. Anyone else have this?

[Kim60]

Sorry and a bit surprised all this happened to you so far after your surgery. I am only 18 days post op. You answered a question I've been wondering about, that being if you could have a leak that far out after sugery.  I've been told to really take things slow and just because I feel good doesn't mean I can do anything I want!  Sometimes I pay for being up and not resting the day before.  Can you just all of the sudden out of the blue get a CSF leak from doing too much?? I have some days that are worse than others but otherwise, I feel I'm getting better everyday.  
I also have the hair pulling feeling in a few spots on my head and now I also know from this wonderful forum that this means things are healing.
I hope everything gets better and STAYS better for you.
Take care,
Kim in NH

[*Stormy*]

Dani...sorry to hear that you had to have another surgery...but it sounds like it has been really successful so I am really glad to hear that!! I pray that this will be the end of it for you and that you won't have to get a shunt

Ray..I read what you said about the pain scale and it is soo true!! It's funny b/c I find sometimes I get used to the pain so it almost seems "normal" until it gets to unbearable!! Or when I go to do something like throw a frisbee or play badminton with my son and after 5 minutes it causes me such pain in my neck and arm that I can't continue. That's when I realize that I don't want to live like that.....so that's what they should put on the scale...would they want to live like that?

Sheesh...one day off holidays and already ranting...lol

Carolyn

[rod44]

Hi Dani, I am sorry that you have had such a tough time, I hope and pray that things remain good now and continue to improve :)

When asked about pain I use my own scale, bearable & unbearable. The other problem I have is this, if you are on pain meds for chronic pain but develop an acute illness you may not realize you have this acute illness because the pain killing meds are masking the pain from the acute illness.

Ray

[selmaS]

No worries, I totally understand...it goes like that sometimes : )


Well EDS...Ehlers-Danlos could be a reason u had a leak and an issue with a staple...it will not show up in the cultures...that will show a type of infection...I just wonder if it  was
rejection?

I am so glad all is going well....good luck with ur staple removal : )

"selma"

[dani43946]

Hey Selma. Sorry I wasnt able to post about my surgery. It all happened so fast. I knew that there was something def. wrong because I should not have been in that much pain almost two months post op. I seriously thought that I was dying.
But so far so good. I actually feel somewhat 'normal'.
As for the test you asked about....I know that he sent csf cultures and blood cultures for everything. He was very concerned....esp with the high fever. Which immed. went away after surgery. So far, everything has come back negative.
I am just blessed to feel as good as I do. I never thought I would.
I get my stitches out Tuesday, so I will keep you posted.
Dani

[selmaS]

So sorry Dani....I wish we had known u had a second surgery....

And I do know what u mean about those smiley's...we know what we can tolerate and our pain scale may be diff....but u also know when u can not take nemore....but I also found that chart to be less than accurate too.

I agree with u that ur leak may have played a part in how u were feeling, but u mentioned a infected staple....that in it self may have caused the leak and the issues too.Were u tested for Ehlers-Danlos?


The burning and pulling sensation is the scar healing...u will notice it more once u have it wet from washing ur hair...as it dries it pulls.....at least u know it's healing.....

I am so happy to hear u r doing better...and u r back !!!

Sending prayers ur recovery continues uneventfully.

"selma"