???????

[dkdean]

I've been lurking for the last 2-3 months and have tried to handle the Chiari symptoms the best that I can.   The 'surprise' mass in the temporal lobe which I had surgery to remove in December was an eye-opener...brain surgery is not easy.  In early January, my chiari symptoms returned with a vengence.  Not sure if they were gone post-temp lobe surgery (that mass was determined to be gliosis) or if the head pain and trying to do what I felt was necessary for the holidays took over the CM symptoms.  Anyway....my CM symptoms ebbed and flowed as they have done since last MArch--dizziness, visual disturbances, numbness--mainly in my fingertips.

Yesterday brought a new onset that surprised me--from part of a CB entry:
Today has brought a sudden increase in symptoms which is a bit unsettling. My hands (although I can still move them) are numb--fingers on both hands and the undersides of both hands. The tops of my hands still have feeling. My fingers have also become cold. My forearms on both sides are also numb. The numbness extends to my face--nose, cheeks and chin are all numb--and apparently I have lost the ability to taste. All very odd and I've sent an email to my team of doctors to let them know of this change (visual disturbances and dizziness are about the same as they have been in this flare up...which started 2 months ago today).

So, does this sound like a CM flare?  I still do not have taste back and the numbness is there, but not nearly as 'deep' as it was yesterday.  Another piece--apparently I have 6 new lesions (since last March--really--since Dec, I think) on my brain.  So, we are talking MS again...LP coming up to check of oligoclonal bands and going from there.  I am starting to think there is more than CM going on.

Thoughts?!?!?!?!?!?!?  I could type more, but am trying to give the basics.  Something odd is going on in my brain....just trying to see what it is!!!

Thank you!!!!!

[pamk5]

Hello, I am sorry you are going through all this.  It really stinks what our lifes get reduced to.  It also stinks that we always have to wait for answers.  I have extremely cold hands and feet... I was told it had to do with POTS in my case.  When my BP levels back out I guess blood rushes to my head and leaves the extremities.  Not saying this is whats going on but it has happened to me.  I have also had the numbness issues mostly in the left side of my face starting at my lips.  It seems to come and go.  I have pretty much blamed it on issues with my cspine since it is a mess too.  

Please let us know what the results of the LP are.  Praying that you dont have both and the "lesions" are as Selma suggested possibly headache related.  I am glad to hear that your last surgery went well.  I hope you find some relief and answers soon!

Pam

[selmaS]

  Hi...it is possible to have many things going on at once...and to have chiari and MS....but, that does not mean that is what is going on.

The hand numbness and cold could be all chiari related ...u may have Ehlers-Danlos...or it could be a syrinx....or even a bulging disk causing some of these issues.

As for the lesions, HA's can cause that too.

  Hang in there and do keep us posted what they find after u have the LP

    "selma"