Does Just a PFD (boney decompression) work?

[Kitmar12321]

Hi There, Group!

I'm a 44 yr old F, diagnosed in May 2010 with a 9mm CM1. without Syrnix. -- CSF is slightly diminished on the right side, completely unobstructed on the left!  I live on high doses of Advil daily.  Take Antivert for what I referr to as 'sea-sick episodes' 3-4x/wk, and have an 'rescue' RX for Tordol - only to be taken for a H/A approaching a 7 on the pain scale, as I've already hit the max dose of pills that's healthy for my other organs to handle.  I have had a headache for over 100 days now, never going lower than about a 4.  I do have other symptoms, but none as life altering as the H/A and the 'sea-sick'!  -- I can honestly say, I'm miserable!!

I met with a great NS who's very familiar with CM, and has done almost 200 of these PFD surgeries.  He will do a boney decompression, (wants to be conservative, as he put it - 'I can always go back in and do more down the road if needed, but I can't ever go back in and undo what I've already done')  saying the boney decompression would halt the continuation of the cerebreal herniations, reventing more damage and keeping the possiblility of a syrnix to a bare minimum.  He won't be opening the dura, but will cut a ligament (can't remember what he referred to it as) and do cervical laminectomies on C1 (possibly C2 if needed) -- I can't really find any info on this exact procedure, or how often it's successful!!

Does anybody have any information they can share with me to help???  I would appreciate any and all info I can find!!

Thanks so much!
Warmest Regards ~
Kit

[selmaS]

Well glad u found ur way back !!

It is a decision u have to make...to have surgery or wait....many wait until they can no longer take the pain or deal with the symptoms....and some do not like the risk of nerve damage or a formation of a syrinx.....it is all in how u look at it,. and ur overall quality of life now too....

As with all major surgeries there r risks...u could feel worse afterward.....so, it is a diff decision to make for some.When the time is right, u will know...in the mean time, I hope u continue to share ur experiences with chiari with us as well as ur concerns : )

"selma"

[Kitmar12321]

Thanks so much for getting back to me, Selma! -- My daughter signed me up here a month or 2 back, and it took me till now to find it again!!  So glad to be back though, thanks!!

I have seen 2 neurologists, and total of 3 neurosurgeons to date.  All agree surgery should be the route I go, as my symptoms are getting worse and they fear they may see the precursors of a syrnix, , but out of all of the appts I've gone to, only this NS I wrote about is really versered on ever aspect of chiari!  I do like him, and feel very confident in his ability, but after all is said and done, it's still my BRAIN they want to operate on, and as intelligent as I am, I can't seem to get to the point where I'm able to say: 'ok, I'm absolutely ready, let's set the date!'

I really wish there were a button we could click on that gave us easy to understand, step by step, concrete evidence that mapped out all the surgery options and the outcomes of each! -- I've been clicking for days, and I think it's pretty safe to say, that button doesn't exist!  lol

[selmaS]

Hi and welcome to the Chiari forum.

Sounds like u r going to get a PFD w/o duraplasty. I have heard some that had this boney decompression that had to have a second PFD with duraplasty as the first did not work.And it can also happen for those that get the whole kit and kaboddle. If u have a chiari dr u r comfortable with....that is the important part....but, I would advise getting a 2nd opinion to at least compare to.

Many drs do the PFD w/o duraplasty to help avoid a CSF leak...which granted is a good thing, u do want to avoid these, but it also depends on u and what is going on......sometimes there r other issues that need tending and the dura must be opened in order to reach that area.

Glad to be able to welcome u to our little family here, so sorry for the reason u had to seek us out.

"selma"