Newbie

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Newbie

Postby Tull » Tue Feb 13, 2018 3:37 am

Hi all

My issues aren't that bad compared to most on here, so i guess I'm one of the lucky ones. (so far anyway)
I am a 58 y/o male living in Qld Australia

On 19/11/17 i woke feeling a slight numbness down my whole left side, from the top of my head to my foot.
There were no other symptoms, except muffled hearing from my left ear. No headaches, no vision or balance issues.
I also had very bad sinus at the time, but that was a side issue.

I had a CT scan on 27/11 and the report stated
"13 mm intensely enhancing nodule in the right posterolateral aspect of the pons. This is non specific, though would be suspicious for a metastasis."

After a very worried night, I had an MRI the next morning.
The MRI report was somewhat reassuring.

It stated "The appearance is consistent with a subacute haemorrhage and peripheral haemosiderin deposition from an earlier small bleed. The combined CT and MRI appearances suggest the pontine lesion relates to a DVA, or DVA and combined cavernous anomaly."
I saw a neurosurgeon on 30/11
His impression was
"a possible right spinothalamic tract lesion but many features of a lateral medullary syndrome are missing"

Since that date, things are much the same, but the numbness may have lessened a little.

I have another MRI scheduled for 27/02, and that should determing among other things, whether or not there was a bleed.

Keep up the good work.
There is lots of amazing info in here, not to mention all the inspiring people.
Tull
 
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Joined: Mon Feb 12, 2018 12:18 pm

Re: Newbie

Postby Elizabeth » Tue Feb 13, 2018 6:35 am

Welcome,

Sounds like it "might" have bled some and hopefully its reabsorbing...so as time goes on many people report feeling better and reduced symptoms. Depending on the exact location...its common for bleeds in the pons to result in double vision, dizziness, headaches, and numbness as you described. Sounds like you might be lucky if its only numbness. Its also very good news in my opinion to have a dva and/or cavernous angiomas vs metastasis. MRI is the best tool to diagnose and monitor cavernous angiomas. Sometimes doctors will use ct scans because they are cheaper and faster sometimes...but ideally..MRI is the way to go especially to avoid unnecessary radiation from CTs. Read as much as you can and feel comfortable doing because being your own advocate is important as many MDS are not informed on cavernous angiomas. Best wishes!!!
Diagnosed September '09 with one CM centered in the right insular cortex/basal ganglia. Saw many, many doctors and had surgery 12/10/10 with Dr. Spetzler. I am thrilled to have this bleeding thing out of my head even though I suffered a stroke during surgery. Have had/ continue to make an amazing recovery. http://www.thankfulforeveryday.blogspot.com
Elizabeth
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Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Newbie

Postby Tull » Tue Feb 13, 2018 10:45 am

Thanks Elizabeth

I'm sure there was a bleed, fingers crossed there wont be another with much worse repercussions.

The neurosurgeon said to lead a normal life, but don't do anything risky like bungee jumping, not that I'd do that with a normal brain.

Yep, I like researching. I have also joined a couple of Facebook groups.

I had an irregular heart beat about 15 years ago, and scans revealed I had a slightly enlarged heart. Medication did not seem to have any effect so after 2 years I stopped taking it, and instead took 300 mcg of selenium daily.
My heart returned to normal and has remained so ever since.
I continue to take the selenium. I do worry now if it may not be good for my brain issue.
Tull
 
Posts: 2
Joined: Mon Feb 12, 2018 12:18 pm

Re: Newbie

Postby Michelle2000 » Fri Feb 16, 2018 1:56 pm

Tull,

Welcome to the group, but I'm sorry you have the need to join. My son had a pons bleed with an initially frightening CT report, so I understand your scary (sleepless, I'm sure) night. After that, a CM dx doesn't seem so bad, but it isn't a picnic. I'm glad to hear your numbness has lessened some. Many people find that symptoms do lessen or go away entirely, but it may take awhile. Doctors like to say "6 months," for about everything, it seems, but improvement can happen after that, just at a slower pace.

If you haven't, you may wish to talk to your doctor about discontinuing the selenium, as it seems to be pretty established as either thinning the blood or accelerating that effect in other medications. That won't cause a bleed, but if one does happen it will be more devastating. (Think of the difference between water and syrup in a leaky hose.) A lesion is most likely to bleed shortly after (2-5 years) a bleed.

Best wishes,

Michelle
17 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH & BIL with multiples in brain and spine; (MIL - deceased spine & brain)
Michelle2000
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