posted
So today i got the results from my MRI brain scan. No lesions or white spots could be found, so no signs of infection according to the neurologist. However, according to the radiologist i have "significant dilated central ventricular without signs of obstruction". Im thinking this is the same as NPH?
My neurologist told me its an accumulation of water in the brain. Her explanation was that i should have had this from birth otherwise i would have severe headaches or something. I dont have a lot of headaches, but still some, and a lot of different neurological symptoms, almost resembling alzheimer. Cognitive problems, memory, mental clearity, dizziness etc. But the neurologist doesnt think the symptoms and water in the brain are related.
So im now wondering, is my neurologist wrong here? Is water on the brain a "normal" condition that i could have had from birth? Or is it more likely that it is caused by lyme? Or perhaps the co-infections?
Posts: 381 | From The Netherlands | Registered: Nov 2013
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posted
I remember researching hydrocephalus many years ago when I started having head pressure headaches.
I was convinced before I found out that I had lyme that I had hydrocephalus because the headpressure was so horrible....I thought my head would explode.
Anyhow, I did read that lyme can cause hydrocephalus as well as can cause chiari malformation (also normally a birth defect).
I think that any backup of spinal fluid in the brain could be cause by an infection in the brain.
posted
Yeah, its strange that my neurologist doesnt seem to find it important, whilest i have a sh*tload of neurological symptoms which she cannot explain.
But the question remains, is this something i could have had from birth? Im 31 years old now and up to 2 years a go i was health until i was bitten by a tick.
Posts: 381 | From The Netherlands | Registered: Nov 2013
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Good question, S13. I often feel a sensation in my skull as though fluid is moving around the meninges surrounding my brain. It happens in different parts. I also have head pressure, off and on head aches, burning, tingling, and sometimes bug crawling sensations in my skull too.
One lesion showed up on my MRI, but neurologist thinks it is a venous malformation I was born with. A brain spect scan showed hypoperfusion - meaning lack of blood flow in different areas.
It is perplexing and disappointing that most neurologists don't know more about how having Lyme (beyond the acute phase) can affect the brain and nervous system.
Posts: 2386 | From New England | Registered: Aug 2011
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desertwind
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posted
I have Chiari Malformation and prior to my two brain/skull surgeries I had a mild case of hydrocephalus. Once decompressed and adequate CSF/blood flow restored it resolved.
Obviously I have Lyme and co.s as well so I would still get bad headaches and pressure headaches but nothing like the ones I would get from chiari. So for me having both,I could tell the difference.
Chiari can be seen on MRI. Radiologists sometimes will not diagnose it unless it meets the strict criteria of a 5mm herniation, though many people will be symptomatic with only a few mm. herniation of the celebellar tonsils. I had a 10mm herniation plus a under developed back part of my skull so things got compressed - that is why I had bad sx.'s.
A CINE Flow is typically ordered to see, in real time, the flow of CSF in and out of the brain to determine if there is an obstruction.
That's probably more info. then you wanted/needed about Chiari but just thought I would pass it on.
If it were me......I would get a second option and/or take the MRI to a Neuro-Radiologist for them to look over. Certainly want to rule out any non Lyme related pathology!
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
The trouble is that these specialists who don't understand lyme are not very good at ruling our non-lyme related patholgy. If they were, we would not have accumulated a bewildering collection of diagnoses in our search for a cause.
Posts: 2888 | From USA | Registered: Mar 2004
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desertwind
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posted
Yes, I agree. I was just lucky enough to have an LLMD at the time who thought something in addition to lyme was causing my neuro symptoms and they were right. Had we assumed everything was lyme I never would have found out about th c.m.
You just never know and it is so difficult to navigate through it all.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Yes, I agree! I continue to think there is something more than just Lyme going on with me because the symptoms that trouble me the most don't fit the profile of what the people here on Lymenet are having to deal with.
But after so many ENT's, oral surgeons, neurologists, LLMD's, LLNP's, LLND's... you think somebody would be able to help me figure things out.
I continue to wonder if my lingering and most troublesome symptoms are somehow related to a titanium dental implant in my jaw that has been corroding and leaching toxic metals into my body, keeping me ill. Or perhaps spirochetes and other toxins are living in a cyst that has formed directly above that implant. All the ENT's think the cyst is benign.
Why is it so hard to find a doctor who will help me investigate my hunches? I have a wonderful LLND who believes I am spot on. We are going to start by chelating heavy metals that my body seems to be overburdened with.
Desertwind, be sure to not use any fluoride toothpaste when you have an implant. I am learning that it can cause corrosion over time.
Posts: 2386 | From New England | Registered: Aug 2011
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