CHIARI 1 malformation thread

[pitterpint23]

Are there dis people with this condition? Looking to meet friends!

 

[mommasita]

Wow.. HI there.. I have had multiple surgeries and Have Chiari 1..

My last were in May and June 2010..

I had the decompression in May, and unfortunately had a massive CSF leak, then I had a spinal shunt surgery in June...

How are you? And have you had surgery?

 

[Tat2ddisneymom]

Me, but I'm not on here a lot anymore. A good friend of mine let me know about this thread. If you want to friend request me on facebook, send me a PM. I've had 20+ surgeries and I lost track of all the procedures I've had done.

 

[pitterpint23]

Wow.. HI there.. I have had multiple surgeries and Have Chiari 1..

My last were in May and June 2010..

I had the decompression in May, and unfortunately had a massive CSF leak, then I had a spinal shunt surgery in June...

How are you? And have you had surgery?

I'm having my first decompression hopefully scheduled tomorrow. I've had serious issues including limb use loss. I've been in a chair since September 14th.

I've had a spinal tap for opening pressure to check a psuedo tumor, but I had normal pressure.

Any suggestions on pain relief?

 

[mommasita]

Tomorrow.. You will be in my thoughts and prayers..

Suggestions (random, bad memory)... I had a morphine pump, and that was for about 3 days.. I actually wanted to go home, I wanted to sleep... For me the issue was more vomiting.. I don't deal well with anesthesia, and always get very ill... The pain was bad, but only for a limited time.. I listened to the Dr's and used my pump.

LISTEN to the Dr's.. I was not able to lift more than milk for 3 months.. After the leak, not more than a telephone.. I am in many groups on FB, and I always see others reminding as well.. THis is MAJOR surgery, not only brain, but the muscles in your neck, and often C1 and C2... Please do nothing, rest is the best healer... THe more you do, the more pressure builds.

Also, FIBER... You don't want to strain, and after surgery it is difficult.. With this surgery, a leak is high up on complications.. Any forcing isn't good..

I hope you have help at home, and good family and/or friends... Please if anything, message me, or respond here if and when you can...

GIant hugs..

 

[pitterpint23]

Thank you so much for the support. It's good to know I have support.

 

[MommyBryn]

I'm having my first decompression hopefully scheduled tomorrow. I've had serious issues including limb use loss. I've been in a chair since September 14th.

I've had a spinal tap for opening pressure to check a psuedo tumor, but I had normal pressure.

Any suggestions on pain relief?

Thinkig of you! My brother has mild Chiari, and our good family friend had it pretty severely and has had surgery. We also have 2 other family friends with it. It's interesting how prevelant it is in our area, really.

 

[Thominator'sMom]

Are there dis people with this condition? Looking to meet friends!

Just found this thread today. I hope that the surgery went well and that you are on the road to feeling better.

I am waiting for MRI results to confirm if I indeed have Chiari. It started out in the spring very mild - pain when I bent over - but has been progressing more quickly since October. I can't get through the day without Tylenol - still mostly pain/headache issues.

Would love to hear from anyone else who has advice on doctor's etc…I read that it can be quite a struggle to get taken seriously.

Take Care.

 

[pitterpint23]

Just found this thread today. I hope that the surgery went well and that you are on the road to feeling better.

I am waiting for MRI results to confirm if I indeed have Chiari. It started out in the spring very mild - pain when I bent over - but has been progressing more quickly since October. I can't get through the day without Tylenol - still mostly pain/headache issues.

Would love to hear from anyone else who has advice on doctor's etc…I read that it can be quite a struggle to get taken seriously.

Take Care.

Pm me, I would love to talk!!!!

 

[mommasita]

pitterpint, how are you?

 

[pitterpint23]

pitterpint, how are you?

I've been scheduled for an appointment with a new neurosurgeon. He's the head of neuro at Ohio state university. Hoping they can get my decompression surgery scheduled soon. I'm having bad sciatic pain on top of my normal leg issues. I finally got a brace called an AFO. I can walk short distances with a walker. Its better than the past two months. You all are so great.

I'm trying to get a power chair approved for my trip. Hoping I can get it as easily as my AFO.

How are you all -- and your families ?