New to site :)

[Lnileski]

Hi everyone! I'm new to this site & I wanted to give a little info on myself & maybe get some opinions. I was dx with Chiari last August. I saw a specialist in November & scheduled surgery 2 days after seeing him. I had my surgery on January 3, 2011. For 5 weeks I felt great, no headaches or pain at all! I was so excited b/c i thought everything went well & i was in the clear. My 6th week into recovery, I got a massive migraine!! And ever since then it's been down hill. We've tried physical therapy & did spinal taps to measure flow & everything is coming out normal. However during the first surgery, he didn't open my dura and I'm thinking im going to have to go in for another surgery to do that b/c ALL of my symptoms came back full force....is this something I should do or just put it off as long as possible??

[selmaS]

Since u mentioned ur BP...have u been tested for POTS?
What is POTS?

POTS is a malfunction of the autonomic nervous system, which controls the body’s involuntary actions such as: heart rate, blood pressure, digestion, etc.

POTS is a chronic condition which can vary in degrees of severity on a daily basis. Some days, a patient with severe symptoms will have to lie down for the whole day, unable to function. Many patients find themselves initially house-bound due to the symptoms. There are severe, moderate and mild cases of POTS. No two patients are the same and no two cases respond to treatment the same.

A common feature is the inability to stand up from a sitting or lying position without experiencing symptoms (orthostatic intolerance). Complaints of tachycardia, migraines, palpitations, tremor, nausea and insomnia are mentioned time and time again. Some also experience syncopal attacks. At times sufferers can be severely limited as to what they can do.

Housework, showering and even eating can exacerbate these symptoms. Many patients find menstruation and exposure to heat and humidity an aggravating factor. Some patients are so incapacitated by their symptoms that they are often misdiagnosed as having chronic anxiety or panic disorder or, worse, being told that it is all ‘in their head’.

What are the symptoms of POTS?

The main symptoms of POTS can include:

Chronic dizziness
Light headedness
Severe unrelenting fatigue
Migraine
Insomnia
Palpitations
Blurred vision
Weakness
However, some patients will also complain of:

Anxiety
Loss of concentration
Shortness of breath
Coldness of legs and fingers
Body temperature regulation issues
Hyperventilation or very fast breathing that can result in loss of blood pressure and fainting

[Lnileski]

I actually just had an MRI done this past Tuesday & heading back to the doctors on the 26th. Last time I was in, he said abt opening the dura, but i'm going to talk to him & see what to expect with that...as far as daily activities go, I haven't done anything! My husband is doing it all b/c once I feel strain or my blood pressure goes up I get a massive headache :(

[zygy2]

Hello :)  Probably best to fight for a new MRI to take a look at what happened in there after the surgery!  It can be not enough done when they don't open the dura or who knows... possibilities are endless I am sure!  They can do all the tests in the world but they need to LOOK at what is in there :)  Chiari is a very frustrating thing!  I was 3 months after surgery when I got a massive headache, mine though is a leak and I am redoing surgery next month.  Good luck with things! Headaches are terrible!

[selmaS]

  Hi and welcome to the Chiari forum.

   Many times the more  conservative surgery where they do not open the dura, is done to avoid CSF leaks...but, many times just does not give the additional room needed and many times a redo is inevitable....

  If ur symptoms r worse than B4 surgery it could indicate other issues...plus, u r still in the early stages of recovery when many symptoms do return...but should not be worse then b4 surgery...it is part of the healing process.

May I ask what ur daily activities r like?....IMHO what we do will affect our recovery.

   It is possible to have side effects from this surgery....one is increased inter cranial pressure or hypertension. Since the LP's r ok...I wonder about infection.....but that too, should show up in the LP fluid that was drawn.

  What has ur NS said about how u feel?

  "selma"