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Mental illness and Chiari

Does anyone out there who has had a Arnold Chiari Malformation Type II operation and was left with Pseudomeningocele, suffer from mental health issues that they did not suffer before the operation my partner Peter was as bad as can be after being treated for  sleep apnoea for years before we paid privately to find the problem, he has now been left with mental health issues, or brain damage due to surgery.
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620923 tn?1452915648
COMMUNITY LEADER

  Have u looked into the Ann Conroy Trust? They have a list of Chiari Drs for those in the UK.......

If there is nething on our site u do not understand please ask....
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Avatar universal
Reading your post takes me back to 12 years ago when my chiari journey began. I have such empathy for you & what you're going through. He is lucky to have you fighting for him. It means the world to the person going thru the hell.  I had to fight on my own. After seeing many "top" neuro's & them telling me I had a psych problem, I continued on to find the perfect solution. I was dumb & trusted the top neurosurgeon in the nearest city to do my decompression surgery 11 years ago. I was a mess & thought I was dying after. He kept telling me I was fine & the scans post op were normal.  I read them, they were not normal at all. (I am a nurse). I suffered severe depression & was a little off mentally for sure. My memory was gone, my personality was different & I was having horrible migraines & balance problems.  Dizziness, nausea & so on. My family dr made me get online & research the best place in the US to go for chiari.  I took 6 months & talked to everyone on a forum like this one.  Everyone seemed to be going to one place with great success. It took 3 months to get in but it was the right place. He told me that I was right, the surgery they performed was a nightmare.  He said it looked like a cave man procedure was done & fluid was leaking everywhere in my head along with a huge ball of fluid causing compression.  They never did a spinal tap before so they did one & said I also needed a shunt to keep the fluid draining off my brain.  I was scared to have the surgery after the pain of the last one, but it was a breeze.  I barely felt pain at all.  I felt so good I was stunned.  I have done well for 10 years. The only other problem is that ruptured discs tend to go along with chiari so 4 yrs ago I had to have my neck fused.  Now my ruptured discs in my  low back needs addressed.  There are many other conditions that can go hand in hand with chiari (I have tethered cord syndrome also), that is why there can be a multitude of symptoms.  I went to Chiari Institute in New York.  They handle all my surgeries.  I have not trusted anyone since I had such horrible experiences in my local area with many neuro drs over the years.  Keep researching & fighting for proper care for Peter. There is absolutely something not right going on. I'll be praying for you all.
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Avatar universal
Thank you so much for taking the time to answer my questions and everyone else on this site too, I am enquiring from England, and it is a real problem to get a specialist as everyone I try and speak to about this problem talks Doctor jargon to me I have googled this CM  on every site for months now but your country seems to be ahead of ours for this problem, as when I talk to anyone so far that has been connected to Peter (my Partner) and the CM sufferer they do not know what CM is or has never heard of it, and I am fighting our National Health System just to get Peter the care he has the right to have.  Afters Peters breakdown when he was admitted to a mental health unit it was me who pushed and pushed to get him another MRI scan to see if the operation had been a success, I have only found out recently that this MRI scan showns fluid retention and the surgeon states on the records that this is to be expected but when I googled it on the CM sites it states to have this fluid retention is an indication of pressure on the brain, which was the big problem in the first place as by the time the hospital at the Royal Preston Hospital at Preston operated on Peter his condition was so bad he was sleeping in a chair as not to choke when a sleep was a sleep 20 hours out of 24 hours, could not walk in a straight line without falling over, and had a terrible tremor in his hands and mouth, could not write, concentrate, or put a sentence together without forgetting half way through what he was talking about.  Even then I had to fight like hell just to get him the operation which took seven and a half hours in surgery.  I feel something somewhere has gone seriously wrong with Peter, as I have now read that the longer you leave CM the more chance you can get a mental illness because of the pressure on the brain due to the fluid.  Peter also had Chiari type II and a spinxs in his spine as well as horrendous migraines that lasted 4 to 5 days in the end.  I just do not know what to do for the best now to get Peter the best care before it is too late to be able to fix him if possible.

I really do appreciate though all your kind help though, that alone just makes a difference, as I know this condition is awful for any of you to have.
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620923 tn?1452915648
COMMUNITY LEADER

  Thanks CW that is a wonderful way to explain so much that goes one with us all.....

I would deff suggest they do a MRI or more testing to see if there is some compression going on,....mayb a build up of CSF is happening and pressing an area of the brain...we all can only speculate...but I would suggest there is something going on they are missing and mis treating.


Get a 2nd opinion by a true Chiari specialist.
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Avatar universal
Ok... I'm not a Doctor so take this only as my own personal experience.

This story scares me, let me tell you why.

At one point in my own treatment [before finding a Dr who understands Chiari Malformation] I displayed alarming physical symptoms noted by family members. I was literally out of my mind in that reality was there I understood what was going on around me but was in sort of a mental fog. And yes paranoia did enter into the picture off and on.

Family took me to the hospital where they diagnosed a stroke and sent me to a larger hospital. The next morning their top NS and NL came in to see me and all the stroke symptoms where gone as was the mental fog and paranoia. The wonderful Dr's answer [Remember this NS was and still is the lead Dr for this group] was to send me to the psych ward for evaluation.
Long story short, there was nothing wrong with me other than having a severe CM reaction to something. When the Psychiatrist finally evaluated me three days later she recognized CM from the films they already had on file. She recommended I see another Dr to be evaluated for CM and released me saying there was nothing wrong that she could help with.

Now, currently, due to some other health and family issues I sought help for depression. After seeing this psychiatrist for several months he admitted to me that he doesn't feel I have CM. Yeah whatever....

Point being, don't be eager to accept any Dr's opinion on what is going on. And if they feel 'drugs' can make things better than it's time to find another Dr. JMO. But too often many Dr's seem to treat symptoms rather than get at the cause. Some of these drugs can actually make things worse especially the mental fog which Dr's dx as all sorts of psych symptoms when really it's not. It's just what many of us call Chiari Fog.

My understanding, which could be wrong, is that the Chiari Fog comes during periods when there is sufficient CSF blockage to cause abnormal pressure on the brain and or brain stem. Even some of these quacks who refuse to admit CM is a problem seem to think this is a psychological problem it is not. This is a physical problem that psych meds won't touch. Depression? Well frankly how can an imperfect human body go through life with CM, let alone the game Dr's play, without a degree of depression?

Again, I'm not a Dr. But I would strongly suggest you do what is in your power to get your friend to real Dr who understands and routinely treats CM for an evaluation.

CW
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Avatar universal

my partner hasn't been diagnosed yet, hes under the brain injury team,. a psychiatrist and a support worker right now as well as only trusting me hes on depression meds and paranoia meds, which he has never been on before, he was ok for the first 4 weeks after the op then rapidly went down hll huge break down as the op wiped 3 years of his memory, then a months stay in a mental health unit and here he is now back home with me a shadow of the man he was before the op.  The op a success apart from his forgetfulness all the time not the hear and now the last week stuff.  
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4816750 tn?1368804670
Please let us know what is going on.
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620923 tn?1452915648
COMMUNITY LEADER

  Hi was the pseudo treated and reduced?.....

May I inquire what type of mental illness he suffers from?....

Not sure I recall seeing something like this b4.....
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