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Intracranial Hypertension and Cerebral Blood Clot

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I was diagnosed with intracranial hypertension (pseudotumor cerebri) last year after months of undiagnosed symptoms and almost going blind due to papilledema. The MRI showed a blood clot, I believe in the back of my brain, though I'm not certain of the position. My neurologist isn't good at explaining things. My diagnostic opening pressure for the lumbar puncture overflowed the gauge, so it was over 50.

I then had a lumboperitoneal shunt put in and was told to take a baby aspirin a day. The pressure was okay for a while with only an occasional headache...but as with before the surgery, the back of my head often constantly ached. Then I went through a few weeks in pain, three or four days in particular where my headache was horrible and the back of my head and my neck ached like crazy. My scalp felt kind of...tingly? Burning? But then it went away and went back to only an intermittent headache. I recently had my shunt valve adjusted (perhaps overadjusted) because the pressure was in the low 20's.

Even without high pressure, I have that nagging aching and occasional burning in the back of my head. Last week at my neurologist, I told the doctor I would like another MRI to check on the clot, and she said it wasn't necessary. I asked her if the aspirin would dissolve the clot and she said no that it would stop new clots from forming and the one I have from enlarging. She apparently intends to leave it there. When I told her about the aching back of my head, she told me that you never feel blood clots in your head.

So my questions are:

1) Can you really never feel clots in the brain? They couldn't be pressing on something and causing aching or burning or something?

2) Why would I have a few horrible days and then go back to feeling mostly okay? It's not like I did anything different in my daily life. Could it have been the clot bleeding a little bit or something, and then it stopped?

3) Last year my neurologist/surgeon questioned the neurologist on duty at the MRI's judgment about my MRI. She saw nothing wrong with it, but he was confident it was abnormal. She mentioned that that part of the brain is usually apparently vague or something, though she admitted to not be an expert at reading MRI's. Given the apparent vagueness and nature of the matter, could what was called a blood clot not actually be one? Could it be something else?

4) My grandmother on my father's side had to have brain surgery in her later years because of "tangled arteries" in her brain. I don't know the medical name for it and can't find out, but could such a condition possibly be hereditary/increase someone's chances for it?
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replied March 20th, 2008
Extremely eHealthy
Your grandmother most likely had an arteriovenus malformation (AVM). This is a malformation of the vessels in the head and they become intertwined with each other and resemble knotted spaghetti.

A clot could be causing pressure in the back of your head. The cranial vault or skull, is an enclosed case with enough room for the brain, vessels and CSF. If something else is in this enclosed vault the result will be pressure on the brain tissue. This, in turn, will result in neurological deficits.

I would seek a second opinion. One of the first things I saw in my patients with a shunt malfunction was a persistent headache. Have you seen a neurosurgeon or only your neurologist? The only way to find a malfunction in a shunt is to check pressures and MRI. Go to a neurosurgeon. Who put your shunt in? Perhaps that is the doctor you should consult about the headaches. A neurologist generally has less experience with these types of things than a neurosurgeon. I hope you will pursue this.
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replied March 20th, 2008
Yes, I think AVM that it's most likely what she had as well. I looked into that a great deal last year when I was trying to figure out about my headaches. What I want to know, however, is whether or not the vague blood clot they said I had has a higher chance of being an AVM due to genes/heredity.

My neurosurgeon and my neurologist are the same person. I believe she may primarily be a neurosurgeon, and a pediatric neurosurgeon at that. No real idea why I was sent to her, but I was told she's a specialist in IH.

Last week I went back to her about the pressure, and she did xrays to ensure my shunt was still in place, which it was. Then she tapped my shunt to measure the pressure, and it was about 22 or so, so she adjusted the shunt to drain off more. I think I may be having slight low pressure at the moment due to overcompensation.

I know that blood clots can cause increased pressure, but would the pain be more localized in that case? I.e. if you have a clot in the back of the head, would the rising pressure make the back of the head especially hurt (more than the rest of the head), or would the pressure always spread out and affect the entire head?
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replied March 21st, 2008
Extremely eHealthy
The pain may be localized but my patients complained of generalized headaches. A clot anywhere in the head can cause problems. As I said, anything that takes up space in the enclosed vault can lead to problems. The pressure of the clot is different than increased ICP due to CSF. A clot would cause the brain tissue to be displaced. That can cause neuro deficits and headaches. ICP changes can also result in headaches but can be accompanied by vomiting. I would get another opinion. A neurosurgeon does the actual surgeries and a neurologist is a doctor that looks at the medical end of problems with the nervous system and brain-MS, seizure disorders, Alzheimer's, etc. If this were me I would find another neurosurgeon and get another opinion. I would try to go to a university based medical center and get another opinion. I hope this helps.

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replied February 4th, 2009
Small blood clot in front of brain
My daughter had a very bad fall, cutting her head open at the back and causing a large lump on her forehead. Had CT scan, was kept in hospital overnight, then discharged. She was given paracetamol, Ibubrofen and codeine for the pain. I read in the codeine leaflet they should not be taken by anyone with a head injury so I haven't let her have those. Unfortunately, the other tablet don't relieve the pain at all. What shall we do? Have you any suggestions for easing the pain, please? If you say it's OK to take the codeine, when should they be taken? She's allowed 8 paracetamol a day but only 3 Ibuprofen. Many thanks
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replied November 8th, 2011
Burning headaches with clot in the head
I am not an expert but I can tell you that I also have that burning feeling in my head and its not every day either. Daily headaches with some days being bad enough to make me cry and others less so but still there. I was told that my headaches have nothing at all to do with my clot which is in my Sigmoid Sinus (in the back of my head) and that my memory issue does not either. I have been dismissed and told to go on about my life...that the blood thinner is all they can do. I have tried to locate anyone who could help and have finally given up after 3 months of steady headaches and weakness. I feel very alone so I wanted to say thank you for writing since I thought the 'burning' in my head I feel was crazy! Nice to know I may not be after all!!

Lisa in Daytona
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