update

[n40066]

i spoke with my local surgeons assistant today and i have an appt. to "review my options" on the 23rd.  ugh!  another week of waiting!  oh well....could be far worse.  usually takes months to get an appt to see an ns, so guess that's the bright side!  she said he is suggesting to remove the part of the plate that protrudes or just to remove the plate all together.  hmmmm....i thought i needed the plate to protect my brain, since the skull was removed to make room!  information under and over load!  lol!  i sent the cd off to dr. h to get his take on the whole thing and hope to hear from him by wed.  i am very interested to hear his take on the whole thing.

we've not talked at all about the bilateral pars defect...guess he's saving that one for the face to face too.as well as the disc problem at c-5/6......

my head is still really sore at the injection points from the occipital nerve block.  however, i do think there is some slight improvement in the lower cervical spine with the pain and a slight improvement on my left shoulder.  but honestly, it all just hurts so much it kind of runs together and is hard to tell if there is true improvement.  while that may sound stupid to most, i've no doubt you folks here can understand!

sorry i'm not on much these days, but struggling right now.  will be on as my body allows.  know that my thoughts are with you, my friends and for the newbies....i look forward to getting to know you soon.  you've come to a great place and will find sound advice, great friendship and wonderful support here!!!

[n40066]

that is the only way i communicate with him.  but the weekend is now here and i know i will not hear from him now until at least monday.  i think you and i both know what is going on at this point.  i am dismayed to say the least.  i have been feeling sick to my stomach for days, not knowing if there is something wrong or if it is simply anxiety....perhaps it is a combination of the two. i feel so let down in so very many ways that i cannot even begin to express.  the pain keeps me from sleep, which doesn't aid to proper thinking either.  perhaps it's best if i keep my fingers silent for a bit too.  good night all.

[rod44]

Many is the slip between the brain and the lip when you have Chiari, it is hard to stay calm but we must. Dont lower your self to there level. Can you express your concerns and disappointed in an E Mail?

Ray

[n40066]

i do love you, my little leprechaun!  and need you to keep me grounded so very much!!  i only called the office once and that was yesterday to make sure they got the cd.  to wit, i was lied to, told it only arrived yesterday, but the very person who signed for it!  then, she hung up on me!  guess she was busy.  but i was not rude, nor was i pushy in any way.  only inquiring.  i have avoided the phone all day because i'm afraid of what i will say if i do call.  we all know how little control we have over our mouths when pain in is control.  needless to say, the brain doesn't work so well at this point either.  

and you're right!  i don't think the world would know what to do with my pieces!  lol!

[rod44]

Well Elizabeth if you stop remaining calm do it in a constructive way, the problem with the plate is due to them not you. If however you get on to the Dr it is best to remain calm, people will react as much to your mood and body language as to the words you speak and you will come away feeling even more frustrated. So if you want to complain or vent then here is the place to do it. We are all dealing with our own individual Chiari problems and no one should feel silly and or selfish or need to explain themselves for being human and in pain.

Well the good thing about you falling to pieces is we can recycle you, I dont know if the world is ready for this yet though!! LMAO

Ray

[n40066]

sorry ray...it's been 2 1/2 days.  in past, the response has always been instant.  i'm begining to have my doubts in many ways here and i don't like what i am feeling.  finding it hard to remain calm.

[n40066]

oh ray....i feel silly and selfish for complaining!  with all the waiting you've done and contivue to do for the tiniest step towards progress i've really no right at all to complain.  see???  that's why i need you so much in my life, dear friend!  whithout a thing but empathy and encouragement, you remind me what it's really all about.  thank  you, dear leprechaun!!!  i love you!!!!!  and see what happens when you are away?  i fall to pieces!  lol!  literally!l lol!

[rod44]

Well Elizabeth I know ALL about the waiting game, not fun. Sorry you are having these issues. I am glad you are getting some pain relief little and all as it is, hopefully Dr H will get back with some answers soon.

Ray

[n40066]

another day has passed and no word from dr h....i spoke with renee today and she said she didn't get the cd until today and just put it on his deck today.  hmmm.  funny, since she signed for it yesterday at 9:42am!  i think it's time he hired an assistant for his assistant. so, here i sit... doing my favorite thing....waiting.  the pain has been quite bad and the frustration of not knowing exactly what needs to be done and when i will do it is close to overwhelming at this point.  without smoking, i've really nothing to destract myself with for even a moment!  this may be just enough to throw me back into the smokers pit.....hope not.  if i can make it thru tonight, i'm sure i'll hear from him tomorrow.  i just have to make it thru tonight.

[n40066]

UPDATE!
today, finally, i have noticed some minor improvement in the pain department to certain parts of my lowe c spine!  there is no relief in my head or neck and i still have the twitching in my lips and left eye.  soooo....that tells me that the occipital block has helped some and that is both good and bad news.  if i had no improvements what so ever, that would mean the plate is the source of all my pain.  bummer i feel a little better.  HOWEVER, since i do have some improvement in pain, perhaps i can put off the ci fusion of c1-c2 for a while if i can get enough relief from the shots!  trying to find the sunny side of my cloud while i wait for tuesday to roll around....  :)

[LisaM46]

Sorry you're not feeling well Lizzy.  I hope they figure out a good fix for you soon.  I'll chime in with the others - I do not have a plate or anything over the bone removal area either.

Lisa

[selmaS]

Thanks : )

[n40066]

lol...i'll send him a letter today.

[burdzmom]

hello there my lady friend!

stinks your having pain and dealing with all this crap all over again....kinda. if it makes you any better, i dont have a plate in the back of my head either :) im under the impressions that the "wax paper type sheet" as i was told, will eventually harden and be just as good as the original bone.
Hopefully you'll get a different outlook from Dr. H by Wednesday. What other stuff is going on? talks of fusion while they are in there?

ugh....i hear ya with the not being on here that often. i got back from JH and feel like the life was sucked outta me. ill post my rant in a few......if im not drooling on my keyboard in la la land....

xoxo-
me

[selmaS]

oh my ...it is not working....sorry...been charging it for 2 days...we need new cell phones big time...can u let Santa know ????

[n40066]

he's doing ok..thanks for asking.  sure do wish you'd answer your phone, though! lol  

[selmaS]

Hey Lizzy glad u got some answers.....not sure if u need the plate as I do not have one...I guess it all depends on how much bone was removed....knowing the plate would be used it may be more than I had...so could be u need something there....very good question.

hmmmmm wish I had some answers for u.

Dr H should be able to shed some light......

praying u get answers and relief soon...how is ur dad???

"selma"