Thoughts on current symptoms

I know I don’t post often, but I am a watcher/reader…I have struggled w ACM since a teen, had my decompression surgery in 2010(@45yo)…the surgery went well, BUT almost exactly 1 yr later had a garage door come down HARD on the top of my head…having part of the base of my skull removed as well as my C1 & partial C2…I struggle w massive brain cooking migraines…the only way to describe it is that it is a :brain: freeze on steroids…I become debilitated!
SO…here is my question open for discussion or advice…ALMOST ALWAYS these hit at 4am, 5am or AS I WAKE UP in the morning…I am currently looking for a new Neurosurgeon to help as I have been told I have Cranial Cervical Instability as well as narrowing of the ventricular CSF flow. I can’t help but wonder am I pinching off the flow some how as I sleep as my R arm will also fall asleep, it is harder to breath when I lay down as well(like pressure on my chest) not terrible, but I can feel the difference.
Ok my peeps, chime in…any thoughts? I am so confused…
I went to the NS I had last seen 3yrs ago and had to be seen as a new patient by the NEW DR AND he was an _SS!
PS…I have had a PRESSURE type headache for 2 weeks now…this new Dr said mid 30’s is ok csf pressure for a person who weighs 250lbs…but 9yrs ago these headaches were bad a n d they drained my csf from 37 down to 18 to help it.

Hey DCumminsKC,
My name is Merl and I’m a member of the Modsupport Team here on Ben’s Friends. I too have major issues with CSF due to a growth altering the natural flow, and have required a few neurosurgeries to ‘try’ and manage it all. And NONE of it has been what you’d call ‘FUN’.

Now, I need to say here I am not a Dr, merely a patient (with very little patience).

Your experiences here are not unique, in fact, I would suggest they’re rather common. That attitude of ‘We operated, we fixed’ is predominant, but when that ‘fix’ doesn’t ‘fix’ then comes every other pseudo diagnosis known to man. With lots of “…It could be ‘X’…” or “… it could be ‘Y’…” but using that theory it could be ‘A’ or ‘B’ or ‘C’ or… any other letter for that matter.

My CSF flow was blocked and it was decided to insert a VP shunt to drain the fluid. When they inserted it, the fluid drained and the brain returned to its normal positioning but the end of the shunt tubing was now sitting in the grey matter. The only time the CSF could drain was when the pressure built, pushing the grey matter clear of the shunt end. So, my pressures were going high, low, high, low… I was on a seesaw of symptoms. I returned to the neuro and his response was “Well, don’t laydown for too long…” ??? That’s not an answer. So after 3 months of me complaining of these weird symptoms they decided to do a craniotomy, going after the growth. But it was growing too close to brain structures I need, so only a partial resection was done and although my symptoms changed, somewhat, that “seesaw of symptoms” continued.

As for your questions “…am I pinching off the flow some how as I sleep…?” you could be. Mine was given the name ‘Positional Intracranial Hypertension’, the pressure would build when I was laying down or horizontal. Every morning I would wake with a head from hell, my eyes felt like they were ready to explode from my skull. Just AWFUL.

“…this new Dr said mid 30’s is ok csf pressure for a person who weighs 250lbs…” :astonished: If my pressures got that high I’d be in some SERIOUS agony, much over 20 and symptoms start exploding. Now, it seems, that there is ‘some’ correlation between BMI and ICP, BUT, it also seems that there are many variables as to the impact. So to be using BMI vs ICP as a rule, rather than a ‘contributing factor’, is not so clear cut.
I have found a couple of studies that discuss this very subject. Here’s the links:
Cerebrospinal fluid opening pressure: The effect of body mass index and body composition - ScienceDirect

The Association between Cerebrospinal Fluid Open Pressure and Body Mass Index in Idiopathic Intracranial Hypertension | Open Access Macedonian Journal of Medical Sciences (

Personally, I’d be seriously considering obtain a truly independent second opinion, if at all possible. I am by no means saying your dr is wrong but an independent assessment may give you a different interpretation of your position. And even if that second opinion agrees with your present assessment, it can serve to reinforce the initial conclusion.

Best of luck with it all,
Merl from the Modsupport Team

Hi.My name is Karen. Only joined the group today.I was diagnosed with a chiari malformation, syringomyelia throughout almost the entire cord,with interspersed areas of myelomalacia.I have a tonsillar descent of 9 mm.I was diagnosed 2018.I suffer everyday with pain,my left arm is affected with burning sensations,i have lots of pressure at the back of my head,shoulders pain,neck pain,i also have a fast heart rate alot of the time.I suffered in my 30 s with severe ear pain my doctors could nt find the course even been sent to hospital for test.Saw my neurologist and he said he is almost certain it was the chiari malformation. Then i was misdiagnosed with osteoarthritis of the left hand,but i knew something wasn’t right.!

Welcome! I hope you find the information here helpful.