Chiari recurrance?

[ncdoner]

I had decompression surgery for Arnold Chiari in April 2011.  Reader's Digest version I had the surgery, a CSF leak, infection leading to Bacterial Meningitis, 4 surgeries to correct the leak including a peritineal shunt, followed by 12 weeks of IV antibiotics.  Finally a 5th surgery 6 months later to remove the shunt.  In  January 2014 I started to have severe headaches mostly at the back of my head.  Pain, pressure, weakness, medications with bad side-effects.  Had an MRI and no seeing my neurosurgeon this week to get the results.  I am so stressed.  I almost died the first time.  What am I looking at here?

[selmaS]

  Hi and welcome to the Chiari forum.

May I ask, did they mention the reason for the CSF leak?...wondering if it  was a failed dura patch???

If so, do you know what type was used, and was it removed in any of the other surgeries you had an replaced with a different type?

Were ALL related conditions ruled out at any point in your Chiari journey?

[ncdoner]

My surgeon said that he has only had this happen a couple times before in his career.  Apparently I produce a higher than normal volume of CSF so it was putting pressure on the patch and not allowing it to heal.  If he had known before he would have put the shunt in before.  I don't know what kind of patch they used but it was replaced at the final surgery with "the best" and it finally took.
After the initial surgery all of my original symptoms were gone.  I had no tinnitus, headaches (aside from surgical), dizziness, tingling in limbs, blackouts.  Now 3 years later, the tinnitus, headaches, and occasional dizziness are back.

[selmaS]

  The reason I asked about the patch is, many that over produce CSF post op have later been found to also have EDS...once the patch is removed and replaced with one from their own tissue they did not over produce as much CSF as b4.....I really feel this is an allergic reaction or rejection of the patch itself....

I would look into if you have EDS and he may want to check his other patients that have had this issue...

[ncdoner]

Interesting.  Would this allergic reaction show up as an abnormality on the MRI?  I saw the Neurosurgeon yesterday and from what he can see on the MRI everything is as it should be.  He said there is nothing he can do surgically to make it any better.   He is referring me to a Neurologist for an opinion.

[selmaS]

  Not always....not until there is a major leak or build up of CSF that pockets can they see it....

Get testing to see if you could have a connective tissue disorder like ehlers-danlos may help narrow down why you are feeling as you do...as it can cause many of the same symptoms as Chiari.....

[ncdoner]

Thanks so much for your information.  I will definitely look into this.