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]

That is certainly becoming evident Selma. So sorry you had to go through so much before you got the right help.

I wish that I had pursued this more 13 years ago when first diagnosed and not listened to that neurologist who didn't check my CSF flow or spine.

This NS I am seeing hasn't asked for lumbar or thoracic MRI's, so I am not expecting the visit in June to be very productive. If I go all the way down there (two hours) to be told to see a geriatrician I am going to be very upset. My blood pressure goes way up now when I go to these appointments lol.

I wanted to ask you Selma. Did you go to the Chiari Institute in NY? They seem to be the best place. I honestly don't think we have much here and would have thought we would have something similar near Toronto. My doctor told me there is no way our Ontario Health Care Plan would pay for me to go to NY, not unless there wasn't a single doctor who could do the operation.  But I doubt anyone here would have the same experience. Sigh.

[selmaS]

  I do understand your frustration.....I had a drop attack and needed 2 surgeries to correct the injuries from the fall...and the drop attacks are Chiari related but I went to so many Drs and they failed to relate them or think I needed help with the Chiari....2 yrs after that fall I finally had surgery....the medical profession move like snails.

[poosygirl]

It turns out it was Dr. Ginsberg who did surgery for stenosis on my cousin, and he is recovering very well.

However after the other doctor at St. Mikes suggested I see a geriatrician, My GP contacted Dr. Ginsberg who declined to take me on as his patient. He is too backed up with patients to be able to see me in a timely manner. My GP read his letter to me over the phone, so I may not be quite understanding the reason and will have to get a copy of the letter.

So now the original NS, the one who said I should see a geriatrician has agreed to see me. I am not feeling very good about that. I have to wait until June 9th to see someone who I am afraid doesn't know much about chiari so more time is being wasted.

My GP agreed that a blocked CSF flow is urgent. NOT an emergency though. If it were 100% block then it would be. He told me to drive down to St. Mikes 2 hours from here if I got worse.

[poosygirl]

Does anyone know if dizziness can become permanent as a result of neurological damage? My dizziness, weakness and staggering is getting worse still and I am worried it will become permanent. (Maybe I am having a stroke? Probably being a hypochondriac.) Have never felt like this. So tired. My BP was 180 over something the first time she tested it at the doctor's office the other day while I was talking, but the second time was 160 over something.

I almost feel like I have MS too. Yesterday my left hand on the outer side felt like I had bruised it, very tender. Then this spread to half my hand and up the outside of my arm. Even washing my hands was painful. The end of my fingers went tingly and now today the tips of my middle to baby finger feel like they have frostbite. I have had this before but not as severe. And my arms both feel weak.

Also, I've noticed that when I take a shower the muscles in my legs feel a bit weak and kind of numb on the inside. Is that a chiari symptom?

Just wondering if this is my chiari, my cervical stenosis or something else that might need attention. Anyone else have these symptoms?

[Emme80]

I always have to get a referral from my GP for any kind of specialist, here in the U.S. Sometimes,(ok, in my experience, it's been like that&I've been sent to countless specialists in my time,( just as we, the Chiari Community know all too well!) & it can takes months to get in w/said specialist...after the referral has even gone through 1st. though  (and of course, can't make an appt. until it's "approved")! It can be such a hassle & a test of patience!
I hope you guys keep pushing along! If our engine fails, we'll help each other chug-chug-chug along! ;)
~emme~

[poosygirl]

My cousin's daughter's husband also had surgery for stenosis at St. Mike's. I think if I recall correctly it was Dr. Ginsberg. His surgery was also successful last I heard. I will contact him and let you know.