My life with chiari malformation

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Hello! I have Arnold Chiari type 1 and Hydrocephalus(but the new dr. says I only need to have just the internal shunt as of right now),as well as POTS,Kyphosis,vertical nystagmas and a Vit. E and Vit. D deficiency. I was diagnosed in 2009 at age 34 with chiari (after YEARS of being mis-diagnosed with Migraines and depression/anxiety),then with hydro a few months later after a "failed" decompression( I had MAJOR headaches that showed up months later,so the doc ordered an MRI with flow 
study.)That's when he found the hydro. The decompression only worked for the headaches for a little while,so he thought that there must be something else. 3 years after the shunt placement I had the SECOND decompression. Scar tissue and a cyst,as well as "not enough bone removed" the NS said .My FIRST shunt was the Torkildson,and was put in due to my having very small ventricles....But,then, I got a CSF leak,(spinal fluid leak)so they put in a LP to try and stop it,then I got the first bout of MRSA so they removed the LP,and for some strange reason,doc was not sure why,my ventricles OPENED UP and they put in my first ventricular peritoneal shunt... I have had 15 surgeries since being diagnosed and I am currently on my 7th shunt.I have had 2 lumbar peritoneal shunts,4 Ventricular peritoneal shunts and a torkildson shunt. I have had MRSA twice,meningitis once,and another rare infection in Jan.2013. I have also had 2 cranial decompression's and the number 1 and 2 vertebrae shaved . During recovery after the second decompression surgery,I was very "drugged" and pulled out the arterial line (IV) that the NS had put in.
I have had to have the dura patched (doc says he put "mesh" in ),due to a CSF leak.I have a Lumbar shunt at the present moment,and my last surgery was in Jan. 2013.I spent a total of TWO months in the hospital,prior to this particular surgery I have also had a cyst removed from the brain,and a torkildlson shunt removed due to scar tissue. I have 2 "tubes",to help with drainage. I have had TWO CSF leaks,each after both the decompression's.I have had 3 external drains,2 in my head and the most recent one being in my back.That one hurt the most!!! I have also had 8 spinal taps,4 were done by intervention medicine(they put the image of they spine on a screen so they can see what they were doing) After 1 of my MANY hosp. stays I was sent to a rehab place(AKA nursing home ) where I was heavily medicated and left unsupervised so I fell out of bed,,SMOKED my head and was sent to the ER via ambulance! I received 8 stitches there, and the hospital freaked and thought I was having a "stroke" (I WAS NOT,THANK GOODNESS!) and sent me via ambulance to yet ANOTHER hosp. It took my husband 5 hours to figure out where I was at because the rehab. place would NOT RELEASE MY INFO!!! SEVEN shunts later,and I have an Lumbar peritoneal shunt.again! I was just recently put on a BETA BLOCKER,due to a rapid heartbeat,and the doc said it was from POTS. UGH! So far so good though,It seem to be working!!!!! I also have been suffering from muscle "twitches" lately,sometimes they wake the hubby,(poor guy) and others have mentioned that it could be EDS (Ehler Danlos), but i have not,(and am afraid to honestly,)had the genetic testing done that is needed to diagnose it.I recently had a trip to the ER,which resulted in admission,and found out,that once AGAIN,my shunt is changing settings on it's own.This time it is the lumbar shunt. I was told by my NS that he didn't know what to do for me anymore,so I sought second opinion. This new doc,discovered that instead of being treated for hydrocephalus for 4 years,I,in fact,should have been treated for ICH (over-draining of csf)! And that this mis- diagnosis may have in fact caused me to have slit ventricle syndrome.When,in reality,my previous NS had stated that I has VERY SMALL SLIT- LIKE ventricles in the very BEGINNING,before my FIRST decompression surgery! I just recently saw another N/S and he had determined that my chiari herniation has indeed returned,and a THIRD decompression may be needed in the future.My lumbar shunt is malfunctioning,and may also need to be removed.The doc said he would determine if another shunt is needed at a later date. The new NS also found that I have a curve in my spine (not scoliosis) and that I have a stigmus caused by my chiari. He said that mine was the first one that he has seen in 20 years that was caused by chiari!!!! He recently referred me to the Cleveland Clinic,as he does not know what else to do for me. I saw Dr. Luciano,and he said the following: 1. he is going to "clamp" off my lumbar shunt.2. He is then going to "drill a hole" in my noggin to do ICP monitoring (check the pressures in my head) ,on a Friday,then again on a Sunday,to determine if i actually need a shunt.3. If I do need a shunt,he is going to remove the LP shunt (it is defective) and place another VP shunt (this will be my 4th). 4. After all that,he is going to do cranioplasty ( put in a patch) in an attempt to hold up my brain,from the "cerebellar slumping",or the "falling" of my cerebellar tonsils,that he believes may have been made worse from the lumbar shunt that my OLD NS inserted. Looks like it's gonna be a "long haul" but I am VERY HAPPY to have answers,AND that they are coming from a "chiari specialist" this time!

UPDATE: I did end up having the LP shunt removed due to another infection. I ALSO ended up having the Cranioplasty done. I spent 2 weeks at Cleveland clinic.I tried to have the ICP monitoring done a month ago,but had low blood platelets,so they gave me a platelet transfusion,and, of course, I had a an ALLERGIC REACTION! Soooooo.... they took me off my paxil,waited a week,and....my pressures are fine so NO MORE SHUNT!!!!!!! Well,at least no shunt that has a valve anyway.I still have the "internal" shunt ,AKA the "2 tubes" in my noggin lol
I have currently resumed taking the paxil,and I also take Diamox (to help reduce fluid build up on my brain)

 

AND...THAT'S MY STORY !