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Jul 19, 2018 · Chiari Malformation type 1 in Brain & Nervous System

Thank you for replying to my post.
I am on my 3rd Neurologist and 2nd Neurosurgeon here at home. I do not believe that they are very knowledgeable with Chiari. So I posted here to try and help my decision of to go elsewhere. Quite a few yrs back before my 2nd husband committed suicide, we had taken his mother to Mayo and loved the care she rec'd. After researching more, I am definitely leaning towards Mayo.
Travel is not going to be an issue. I have already looked into drive time, or flying and hotels. Just trying to get info to make a better decision.
I will definitely take a look at all the links you posted.
Thank you,

Jul 19, 2018 · Chiari Malformation type 1 in Brain & Nervous System

About 5/6 yrs ago (I think), I went to my eye Dr to have my eyes checked. He did the whole work up and said I had optic edema, he referred me to a neurologist. The neurologist scheduled a CT scan and a MRI. After getting the results he ordered a spinal tap. Your pressure in your head is suppose to be 8-20 with 20 being very high. My spinal taps have been anywhere from 34-48. I was diagnosed with Chiari Malformation Type 1 with my cerebellar tonsil at 10mm below the foramen magnum, a few small foci of increased T2 and FLAIR signal involving the anterior parietal subcortical white matter, and hydrocephalus. The neurologist put me on the highest amt of Potassium, furosemide and Topiramate that he could. I took that medication for 2yrs and nothing was changing.The neurologist sent me to another neurologist that was suppose to have dealt with Chiari and again the same thing. I quit taking all medications and seeing the Dr;s for a few yrs.They finally sent me to have an IR ANGIOGRAM-CEREBRAL-BILAT. The results of that was :
A large filling defect is identified at the
transverse-sigmoid sinus junction on the left. The pressure gradient
across this filling defect is 18 mm Hg. The left dural sinuses are
dominant. The right transverse and sigmoid sinuses are diffusely
small. There is however also a hemodynamically significant gradient
across the right transverse-sigmoid junction; this was also 18 mm Hg.
The cerebral arterial circulation appears unremarkable; no evidence of
aneurysm, stenosis or vascular malformation.
That Dr. called and consulted with a few other dr's and scheduled me to have a stint put in. My neurologist stopped that and sent me to a Neurosurgeon for a consult, in which he just said I didn't need surgery, I just needed to lose weight. (I was not happy)
After all that, I was upset and quit going to any of them until about 2 weeks ago. I came home from work and was headed to my basement and fell. I got up and went to bed, woke up with blurry vision. My daughters uncle in law (a DR) suggested with all my symptoms that I need to go to hospital and be checked out. So we went and they ordered a CT scan. It showed the Chiari (of course, but no hydrocephalus). They referred me to another Neurologist. So I went and was examined. He ordered another MRI and wants me to see another Ophthalmologist and another Neurosurgeon consult. Well I made the appt with the Ophthalmologist and called for a consult with the Neurosurgeon and was told that he would review the Dr. notes and MRI and call back to possibly schedule an appt. Well the receptionist called back and said that he recommended that I see the Ophthalmologist and take whatever medication the Neurologist prescribed and give them a call back. (Well the Neurologist hasn't prescribed any), because he is waiting for all test results to come back. I called the Neurologist and told him what was said to see the Ophthalmologist and try and get a consult with Neurosurgeon again, again I explained what they said, and he said the same thing over again. I sent a message to him again and asked if I should see the Dr. that originally scheduled to have a stint put in. He called and said no, don't schedule surgery until after we get all results back and then we can talk surgery. I have had nothing , but problems with the Dr;s around here. I am very seriously thinking of making the long trip to Mayo to deal with Dr;s that know about my condition. I will list my ongoing and worsening symptoms as well as the current MRI findings below:
FINDINGS: Multiplanar multisequential magnetic resonance imaging of
the brain was performed before and after intravenous gadolinium
contrast administration. 10 mL of intravenous Gadavist gadolinium
contrast was administered.
The cerebellar tonsils descend 14 mm below the foramen magnum,
consistent with a Chiari I malformation. There is no parenchymal
diffusion restriction to suggest an acute cerebral infarction. There
are several small foci of signal normality involving predominantly the
subcortical white matter of the frontal lobes, most consistent with
small vessel chronic ischemic changes.
No intracranial space occupying mass lesions are identified. There is
no evidence of acute intracranial bleed. No abnormal extra-axial fluid
collections are present.
Midline structures of the brain have a normal appearance. There is no
midline shift. There is no evidence of hydrocephalus. The sulcal
pattern is normal. There is no dural thickening. The visualized
paranasal sinuses and mastoid air cells demonstrate no significant
constant headache (sometimes worse than others), major vision changes (sometimes blurry or double vision), ringing in my left ear for the past 5/6yrs, memory loss that is getting worse, hearing loss, unsteady gait at times, falls, numbing and tingling in my hands and feet at times (more often recently), stuttering, sometimes swallowing issues, head feels heavy, neck hurts, pains in back and fatigue.

Sorry for the long post, but getting a little worked up and stressed (I know, not good) about all the new results, especially with the frontal lobe, chiari going from 10mm-14mm now and the small vessel chronic ischemic changes.

Any suggestions on what I should do? Should I stay here and keep messing with these Dr;s or just make the trip to Mayo? Will I most likely have to have the posterior fossa decompression surgery?

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