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1306714 tn?1327257080

Pain clinc appt.

Just wanted to let every one know that today was a hopeful day.  The Dr changed one of my script's for my fiberomylgia which our insurance actually cover's.  That's a blessing in it self.  Also I am scheduled for pain injection's in the  back of my skull.  On each side of the bone.  The doctor could feel how sensitive the back of my head is.  I did give my concern on how nervous I am getting shot's done due to my chairi, and she did state Chairi is unusual  but they have dealt with it before.  She also prescribe a steroid cream to relief some of the pain for my muscle's and my nerves.  I was just wondering with every one else that has had surgery.  Is the back of your head indented and also does it feel like a babies soft spot like they have on the top of their head's at birth,?  Because that is the way mine feel's.  That is why I am so protective over it.  Also I told her of my hip and back problem's and she is scheduling me to see a doctor who can get me alined.  So today really gave me hope of a better tomorrow.  It put a twinkle in my eye. (smile).
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620923 tn?1452915648
COMMUNITY LEADER

  I feel the same : )


  Glad I could be of help.

Keep me posted
Helpful - 0
1306714 tn?1327257080
You are not only smart,  but your also funny thanks for the laugh.  So much like me.  I am so thankful we have become chairi friend's.  I know I won't forget that. LOL.  Thank you for all your info.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  No worries....I also had to take someone to remind to read my notes....lol....that would make me so mad I would leave and realize I never read them....ugh

Like I said there r several types of EDS...so it is good to know if u have this.

  Good luck....

   "selma"
Helpful - 0
1306714 tn?1327257080
Thanks so much I just wrote that down.  One thing I have to do for all my office visit's is have some come with me and also write all my question's down.  This will be the first one I'll ask.  Thanks.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  EDS = Ehlers-Danlos Syndrome....it is where u could have hypermoble joints...velvety skin, easy bruising....

There r several types of EDS so, many of the typical symptoms like chiari u may not have...but keep an open mind...I swore there was no way I had this...yes I was slow to heal and yes I bruised easy, but that was all I knew....well after a NL visit I found out my joints r very hyper mobile....now I understand y I had a hard time playing the violin when I was a kid...my knuckles collapse....I was not aware of it....

This is one condition we all should be checked for B4 surgery as it will affect recovery....this is MHO.

   "selma"
Helpful - 0
1306714 tn?1327257080
See now my memory is escaping me what exactely is EDS, because I will definetly ask on tues when I have my appt.  I'll have to write it down so I won't forget LOL.  I'm not kidding though.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  hmmmm well I  am confused....when ur body rejects stitches that is a good indication u might have EDS....all u tell me leads me back to the same thing and I feel like a broken record...but, those with EDS run a higher risk of rejection....and leaks.....

This is y my NS harvested skin from me to make my dura patch and did not use stitches or staples...he used sterri strips and glue.

I try to try things to keep my memory sharp, but it eludes me and there is nothing I can do when it is nowhere to be found.....lol...I have to laugh...what other choice do I have?

  Please keep asking them to check u for EDS.

     "selma"
Helpful - 0
1306714 tn?1327257080
Yes I had 3 surgeries.  The doctor told me that our skin tissue usually and naturally expands around the stitches that they put in the patch when they put it in on surgery day, but for some reason my body wasn't happy having the stitches in there and so that is why I had leak's.  I never knew much about Chairi and what types of patches that they use but my first surgery I know he said it was a mesh type material they sew in, but yes on my 3rd surgery he put muslin in.  Now I just think of myself of a patch in a quilt LOL.  I understand completely of the memory issue.  I also mentioned this today because yesterday was a very painful day and I really had a hard time with the memory thing.  Some one told me their name and 1/2 hr later I couldn't remember what they said.  This is scary.  I never had this memory problem as bad as I have had it these past few month's.  Also my husband teases me and say's it is an age thing too.LOL.  I blame it on chairi.  
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  There is a little indentation....but no more then when  I had whip lash....and it is not soft...it feels tight enuff

I never heard of them using muslin.....

Is this a PCP or a NL that u saw today?

I can't help but wonder if u just had too much bone removed...is that y u needed the surgery re-done?

  Sorry I am drawing a blank as to y u had 3 surgeries....ugh dang chiari.

     "selma"
Helpful - 0
1306714 tn?1327257080
It's not a chiroprator that they are sending me to.  He is just going to aline my hip.  I won't let any body mess around with my head.  I even quit. having my massage monthly because of the fear of having something messup in my head as for my path.  I had the dura patch my first surgery than in my 3rd surgery the doctor put muslin on top of the dura path.  So I am double pathed so I better not get a leak. LOL.  Also I wanted to tell you I expressed my concern of my spinal fluid flow and ask for a CINE MRI as I see you suggest on here quite often.  She said we will try the shot's as I said I still have quite a fear about this but it is worth a try.  She said it won't be near my patch or spinal fluid so we will see.  The back of my head is really soft and when I rub my hand on it I have some really sensitive spot's so I was really curious with every one else.  So what does the back of your head feel like.  There isn't an indention or softness at all?  I thought this was due to the removal of the bone they remove to make more room for the brain.  Now I am really curious.
Helpful - 0
620923 tn?1452915648
COMMUNITY LEADER

  Hi...so she didn't check u  for EDS...or nething and is sending u to a chiropractor? Be careful and do not let them manipulate ur neck at all.I am glad u  have hope and that this Dr is doing something positive for u...just be aware that u may have to educate the drs u r sent to about chiari.

Ummm I would not say the area is like the top of a baby's head, the soft spot....and I do not think it is all that large an area.,..but it can have something to do with who did it and how they did it and the type of patch used.....

Do u know what type of dura patch u have?

   "selma"
  
Helpful - 0
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