Chiari Malformation

[ruby52]

I bet you are feeling so relieved,shocked upset,angry,vindicated,scared,horrified and every other feeling you can possibly feel.Good for you for hanging in there and pursuing answers.Your gut feeling something was wrong in spite of being told it's all in your head was strong.Be very proud of yourself.You still have so much to go through and I wish you the best of luck.
                                                                      Ruby

[fluffiebunnie]

I tend to read more than post, but have followed your struggles in your threads.. I hope this is the start of a better life for you... I wish you all the luck in the world with the surgery and your recovery afterwards. Take care x

[navydad]

I;m not holding my breath on all that this surgery will do,, I wonder if the damage thats been done to my nervus system can ever be cured,, I cant belive the weird symptoms I feel over my body,, this moring,, I sat at the kitchen table afraid to even get dressed,, the thought of putting clothese on just makes me sick,, there like putting on a bag of ice cubes,, its weird I know,, then my wife walked past,, just the breeze from her walking by made me feel like I was hit with a stun gun,, my legs and arms are in constant pain,, and I still dont kow one way or teh other wether I have SS or not,, its really maddening,, I;m trying to work a little overtime,, just to get a reserve together wheni go off work,, I havent told my employer yet about the surgery, half afraid too since i have only been back to wokr a little over two mmonths,,

[kathyl]

Wow,
Thank you for posting about this.  I have been looking for a follow up on how you have been doing.  My cousin's daughter has a Chiari malformation.  She had the surgery and regained functioning in the right side of her body.  She still gets headaches but is doing so much better.  I will be thinking of you and hoping it goes well.
KathyL

[KYMOM]

 I must add my own good wishes to you.  I will be thinking about you on August 12.  Hoping for you that this will aleviate some of the problems and symptoms that you have been experiencing.  This has been a difficult road for you. Roxanne

[Bernice]

Navydad,

I am so happy that there's an upside for you. Hopfully you will be back to doing ALL the things you enjoy, but have missed!
I will keep you in my thoughts and prays!

I also think Iris' suggestion is a good one, do have them send the reports. It might be helpful in a speedy diagnosis for someone else they encounter.Who knows might save another's life!

PEACE & BE BLESSED
Bernice

[Epson]

Navydad,

See, the doctors were right the whole time, it really was, all in you head   Glad to see that someone got to the bottom of this and you will get relief of all or at least most of your symptoms.

[navydad]

I really dont know what to write,, just some words I guess, I to am praying that this s urgery works for some of my symptoms, I was at the ENT the other day and he was able to pull up the report on the sural nerve biopsy I had done a week ago,, seems there is some chronic loss of axons,, and a few other thins going on,, but no idea what is behind all of it,, I dont think the surgery will help with that,,
  Its reallly warm out today and just being at work is hard,, I am spending a lot of time outside and its making me physically sick, hard to breath,, hard to swallow,, extra dry mouth, How much water can one person drink?,, I;lm so tired wheni get home,, I am not much of a joy to be around much,,,, I hate what Sjygrons has done to me along with the other thing going on,,
  I havent told my employer that I will be out of work for at least a month,, I just got back a month and a half ago,, SIGH,,
  Its amazing how this disease strikes everony so differently,, slowly I watched myslef just deteriorate,, first the leg pain,, dry mouth,, dry eyes,, then in March noticing that i had to wear something under my pants to keep my legs warm,, this from a person that used to go outside in a T-Shirt in the winter time,, now if it gets below 60 i start to shiver,, I have talked to others with some of the same symptoms and they said theres went away after surgery,, I am not looking for that to happen, I think its all part of the neuropathy,, and not much they can do for that,, its not much of a choice really,, esppecially when you still dont kow exactly whats wrong,
  I would settle for just some of my life back,, at least the walking part,, wheni was in the hospital hack in January,, the neuro I had was really nice,, she asked me what wouklld I want back,, I told her to be able to just walk,, walk without pain, be able to climb my hills again,, I cant even take out the garbage,, theres a small grade at the end of our driveway,, and last night I tried to take out the cans,, the small grade had me lifting my legs up to get there,, I think what I should say was I was dragging them,
Morings come to early, when you have spent the night coughing from something no one can figure out,, I know what it is,, its that slime they call mucos,, its so thick anymore,, its never gotten better, and the ent is out of ideas,
 
  I worked a double shift on tuesday,, trying to put away money for the upcoming time wheni am off work,, it about killed me,, yesterday I wandered around work like some kind of idiot,, notng made sense,, two of the other electricians are off on vacation, (something I wish I could do),, so were left with just me and a another guy,, its been heck,, oh well,, just some rantings of a crazy person LOL,, hope everyne is diong well,, and God Bless

[Chickpea]

Hi Navydad

You're certainly entitled to a bit of a rant and we're the people to rant to! 

It's going to be hard to keep going over the next month before surgery but we know you can do it, and you can always come here and tell us about the struggle.  Who knows how things will change after the surgery?  It's very exciting and life has all sorts of possibilities.  Maybe you will be able to walk more, as you told the neurologist you dreamed of doing?  Sometimes I let myself imagine what it would be like to stride or stroll along by the sea with the wind in my face as I used to do, never realising how privileged and blessed I was to be doing it.

Hope you have a restful evening.

Take care - Chickpea

[coopwall]

Navydad,
I'm so happy there is hope that some relief may come from the surgery.  Even lessening your symptoms would help.  The other thought I have is this may qualify you for total disabilty.  I sympathize with your struggles to work and provide for your family. 

I'm praying for success to your sugery, and for your day to day functioning up to Aug. 12.  Will look forward to reading your rants, prayers, or whatever you post!!

My best to you.
Coopwall