So frustrated!!

[cash242]

It seems this is the theme this week but am at my wits end!! I can not manage my pain and am dizzy, weak, ear throbbing, nauseous and failing at being a mom this week.  I just had an MRI and and MRA (for CSF) and prayed the entire time that they find something but am so afraid they wont.  Dr Oro's office told me today that it may be to soon since my decompression surgery to even see me so if they don't I am at a loss.  My NL is trying so hard to help but I just don't know if he knows enough.  I am sorry to vent but you guys are the only ones that understand I just don't know what I am supposed to do next I just went through this 6 months ago!! My headache pain is just so bad and I can't manage it. Thanks for letting me unload lol!

[selmaS]

  No worried...just promise to stop being so hard on urself.... : )

[cash242]

No havent ruled out tethered cord am really leaning toward ICP just had MRA yesterday which is what Dr Oro wanted to check this but they said they might not see me since it hasnt been a year since my surgery.  Thanks for all of your input it is truly appreciated!

[selmaS]

  PTC stands for pusedo tumor cerebri or the newer term is intra cranial hypertension.xcess CSF.....

And u ruled out tethered cord already?

    "selma"

[cash242]

Thanks I just want them to find out what it is, should get results Tues.  So what is PTC again?  Pretty sure it isn't brain slump looked at MRI and it looked much better than before surgery but I also am not the best at looking at them! Thanks again!

[selmaS]

  Well then u have to look into pseudomeningocele and brain slump....the other issue could be PTC, and tethered cord...outside of an infection or rejection of the patch.

  Sometimes it can not be determined right away post op....as it can take time to develop and I  am not sure if it shows up in the early stages, but I know it feels just as bad regardless.

  Use a journal to keep track of new and worsening symptoms so u have details to give the Dr,

   "selma"

[cash242]

Thanks I just really have a strong feeling that this is more than recovery I feel almost and sometimes as bad as before and getting worse all the time.  At least I have the tests done and hopefully something small comes of it next week.  I wish we had a really good pain relief nothing works for me--anyway thanks for letting me vent and hope all are having a better day than mine!

[selmaS]

BTDT...I know how u feel and I had that same feeling during my early stages of recovery...it was so unexpected...u come from surgery and feel great, the first time in a long time u do  not have symptoms....then slowly they return, and u get depressed...wondering y.....

But, I will tell u at 2 yrs post op I am better than I was at 1 yr post op....u do continue to improve...even with all the return of symptoms....

Ur issue may be more than mine, and I can only pray that it is not  a set back that requires more surgery.....

  The best thing u can do now is unload...to hold it in is no good....I just wish we could offer u more insight as to what u can do...outside of ne relaxation tech u know.

  Sending good vibes~~~ u feel better soon
              "selma"