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Chiari Malformation Community
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997898 tn?1303738464

update

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!!!
16 Responses
620923 tn?1452919248
COMMUNITY LEADER
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"
997898 tn?1303738464
he's doing ok..thanks for asking.  sure do wish you'd answer your phone, though! lol  
620923 tn?1452919248
COMMUNITY LEADER
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 ????
Avatar universal
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
997898 tn?1303738464
lol...i'll send him a letter today.
620923 tn?1452919248
COMMUNITY LEADER
Thanks : )
1388357 tn?1280193093
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
997898 tn?1303738464
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....  :)
997898 tn?1303738464
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.
999891 tn?1407279676
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
997898 tn?1303738464
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!
997898 tn?1303738464
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.
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