Reduction in CSF Flow/Need Some Support

[poosygirl]

Opinions please, from people diagnosed with a reduced CSF flow. And from those who have had surgery because of it. Or anyone who had advice.

I am 61 years old. My Chiari is only 1.5 mm. My last MRI said I have a mild reduction in CSF flow. No syrinx.

I am finding it increasingly more difficult to concentrate and wonder if the mild reduction in CSF flow could be the reason. Or, am I just getting old? I need to make a living, yet I have so much brain fatigue and overall not feeling well, that I am not succeeding.

I am not being productive and even though I need to care, I don't have the energy to. People, like my GP, try to convince me it can't be the Chiari (though I have not talked to him yet about the reduction in CSF flow). Maybe he will change his mind. But it is to the point that I doubt my judgement, wonder if it is mostly depression or just aging.

I am not begging my doctor for pain medication so he is concluding it can't be hydrocephalus. I understand that may be so, since that would have shown on the MRI too, but can the mild lack of CSF flow be causing problems anyway? If so, how?

I have learnt to put up with headaches and don't like meds stronger than Tylenol with codeine, which doesn't work. I do not want to end up dependent on more medications. Can't afford the ones I take!

Sometimes I have the headaches and neck pain for weeks. But even when that goes away I feel in a fog, and get double vision. It is both too hard to take in information and too hard to see. I only read on the computer or iPad now. Reading print is too frustrating to be a pleasure.

I hear words but my brain is usually too slow to process it. It's scary. I keep rewinding the TV and asking people to repeat themselves. This is life changing because I don't like to socialize anymore. It's embarrassing!

Throughout my life I have had periods where I feel in a fog and periods where my head feels relatively clear. I went through times of relatively good health, but never knew what kind of a day it will be. I failed grade nine because I couldn't concentrate but later got a university degree.

So I think I am intelligent, but am afraid that with a lifetime of blocked CSF flow there is brain damage. I don't have a bad gait, urinary problems or numbness consistent with hydrocephalus, thank goodness! But I just feel that my thoughts are too slow to function the way I need to, among other symptoms.

I haven't worked outside of the home for five years now, though I do need an income. Been trying to build a career in a field which I prefer not to mention, working from home. But it takes more energy and concentration than I have and I'm being left behind, as usual.

I would like to know if I am obsessing over this Chiari thing, blaming it for my problems when it might be depression and anxiety. Should I just forget about it and leave well enough alone? Or would surgery help me get my concentration and energy back?

[poosygirl]

Well, my GP is inept at even listening to me when I mention EDS or CSF leak. I have mentioned them and he just stares at me with crickets playing in the background lol. So I feel lucky just to be seeing the wrong kind of NS at this point.

I guess I will make another appointment with my GP and attempt another discussion about these two possibilities, as I do suspect EDS because of my hypermobile wrists, hips and toe, not to mention my neck feels unstable and I was rather bendy as a kid. I just get really upset when I see him now.

And also I have read about CSF leaks, that it could cause fluid to pour out of your nose when you bend over a certain way, and this has happened about 1/2 dozen times though I didn't have any congestion or allergies, it totally surprised me. So I got to thinking that maybe I don't have a malformed skull and the tonsils are a result of something else.

I did have headaches as a small child but maybe something happened. Apparently I was walking at one years old, but suddenly stopped for several months.

Also when I was around 14 I fell through the roof of a barn into a concrete pig stall flat on my back. That really hurt but I never went to a doctor about it. Then I was in two car accidents, once, in the backseat, rear-ended on the highway so that the back end of the car was smashed in like a fan and sent us spinning all over the highway. My neck was stiff for a few days after.

Another time in my early twenties the driver lost control and we skid into a ditch and smashed the windshield with our heads and I think I lost consciousness for a few seconds and had a mild concussion. I had glass removed from my head and arm but the doctor said nothing about a concussion.

Never had a lumbar puncture.

So my question is, do you know how they determine if your skull is actually deformed. Maybe they just assume when they see a herniation? So in that case, making more room for the tonsils could be a big mistake, could it not???

[selmaS]

  I have to ask, did they rule out a CSF leak? EDS?

Many times we are told Chiari due to there being a  cerebral tonsil herniation, but Chiari is the malformation of the skull ...the herniation can occur due to several reasons.....

If you ever had an injury/bulging disks, have EDS, or had a lumbar puncture you could have developed a CSF leak which can pull those tonsils down.....

[poosygirl]

Absolutely! You were so fortunate. I wish there was a universal health care system where everyone who needed it could go to TCI but I know how complicated that all is.

At least there are organizations out there trying to raise awareness. But we do need more institutions like TCI available in other countries.

[selmaS]

  I am just glad I had TCI to go to and my medical INS covered most of it....cuz I am not rich either....

It's so sad that there are not more Drs educated and experienced with Chiari and related conditions and that all NS's think that bcuz they are a NS they can do any surgery on the head/brain.....sigh.

All you can do is ask them if/when they say they are not sure they can help.....

[poosygirl]

That is an interesting idea! I do think I have to be really careful not to accidentally insult anyone though. Not sure how they would take it.

They are all so incredibly busy with patients a lot worse off than me. The surgeon I want to see performs miracles with people who have had terrible head trauma from car accidents etc. So maybe I am not sick enough for someone like him. He is concentrating on research doing new high-tech minimally-invasive techniques on the spine. He lists chiari on his website, but I wonder who many he has done.

But the surgeon I've been referred to on the other hand specializes in brain tumours.

Wish we had an institute dedicated just to chiari like NY. If I were rich I would go there.

[selmaS]

  Yes I did...and so glad I choose to go up there as there were no Drs around here that knew anything about Chiari or related conditions....I even drove down to Philly and still no help....so NY was the best option for me.

I really liked the Dr assigned to me too....he was very personable...and caring...he explained everything to me and my hubby in detail....

I wonder if your Drs up there would be willing to call a Dr like one at TCI in NY for a consult to get more info??