CCM / DVA / Intraosseous hemangioma - WOW

Discussions about the illness, treatments, doctors, etc.

CCM / DVA / Intraosseous hemangioma - WOW

Postby DebbieW » Thu Oct 12, 2017 5:45 am

Hi All,

Although I am not new here, I wanted to post here as I am hoping that this may be the best place to see things.

I have recently been diagnosed with a CCM in close proximity to a DVA in the right cerebellar hemisphere. Currently, doctors do not want to perform any treatment, but to monitor with an annual MRI. This was discovered as I was sent for an MRI due to continuous ringing in the ear (right and high pitched), persistent headache, nausea, dizziness etc. Besides all of these, the worrying factor for me recently is my short term memory, which has decided to take a long walk off a short bridge :roll: :?

They also scanned my neck, which has shown disc herniations in c5 c6 and c6 c7. There is nerve root impingement as well as narrowing of the spaces. I have had cortisone epidural injections in my lower back, to no avail. This leads me to the lower back.....

I had an MRI in August 2016, due to my right leg going numb and suffering from severe lower back paid. Originally it was thought to be due to diabetes, but this has not been confirmed. I was also diagnosed with disc herniations at L4/L5 and L5/S1. Upon going through my previous scan report today, it hit me like a ton of bricks....... I have a prominent intra-osseous hemangioma in the vertebral body of T12. Could this all be related? I know that they mentioned they dont normally do anything about the hemangioma in the spine, as it is basically a "blood tumor", hence the risk of bleeding, but wondering whether this could all be linking to each other.

If you have any comments, suggestions and/or advice I would be most grateful. I am a 52 year old woman based in South Africa.

Many thanks and kind regards,
Posts: 19
Joined: Wed Aug 30, 2017 1:01 pm

Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby var281 » Sat Feb 24, 2018 4:05 am

I am sorry to hear about your CCM and DVA.
I have a hemangioma in my T11 vertebra and I had a T4/T5 spinal cord cavernous malformation removed in 2016. I was told that the vertebral hemangioma did not intrude on the spinal cord so it did not cause any of my problems. I also had my spinal cord detethered in 2013.

Of the things you mentioned, I would focus on the CCM and DVA because those are very serious problems. You can have severe leg problems from a herniated disk, but you did not mention the severity of your disks. There are tests that doctors can do which determine if the leg pain is from a herniated disk. Many people have mild herniated disks. If it is severely herniated it can cause lower back pain and leg pain.

Best wishes.
T4/T5 Spinal Cord Cavernous Malformation removed by Barrow 2016, some remaining hemosiderin
small T11 Syrinx
Spinal Cord Detether in 2013
Posts: 10
Joined: Fri Feb 12, 2016 6:13 pm

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