CCM / DVA / Intraosseous hemangioma - WOW

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CCM / DVA / Intraosseous hemangioma - WOW

Postby DebbieW » Wed Oct 11, 2017 1:01 pm

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,
Debs
DebbieW
 
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Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby Elizabeth » Fri Oct 13, 2017 12:44 am

I'm sorry! That's a lot going on and worse...you're not feeling well. :( My memory took a big hit with my bleeding too. It was really scary because I had a really amazing memory and it disappeared for awhile. It's a symptom most doctors tend to disregard because memory is so complex and so many things can affect it. I was doing all kinds of things that might be normal for others but I never experienced before or since. I locked my keys in the car, left them in the front door...couldn't find them ever. I would go to the grocery store and buy the same thing every time. I had like 15 mustards at one point :oops: I'd put the new one away and be really scared... What was happening?? Maybe that's normal for other people but not for me. I had returned to work after maternity leave and couldn't remember anything about my job. I was a sales rep and I couldn't remember my sales material I had worked on for the previous 5 years. I used to give lectures and I'd get up to give the lecture...completely forgetting every single part. :lol: funny now...not funny then.

Anyways, I'm rambling. I doubt its all connected from the angiomas. I wouldn't think the one in your vertebral body is any concern. Although, the disc herniations can easily be pinching nerves and could be causing pain or numbness The tricky part is reducing the inflammation without antiinflammatories which are mostly blood thinners. Be sure to get diabetes either treated or ruled out because uncontrolled diabetes is risky on its own. Take care and 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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Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby DebbieW » Fri Oct 13, 2017 6:27 am

Hi Elizabeth,

Thank you so much for your response. I am truly grateful for the time you have taken and to hear that I am not alone with the memory issue. That said, I am sorry that you have experienced same/similar issues. It is certainly not pleasant, especially when it is so out of the ordinary. I have always prided myself with spelling too, and now that has gone for a loop as well.

My diabetes is being treated and has been stable for many years now, with medication. That is why they have ruled out the diabetes causing the numbness etc.

You mention not taking blood thinners, which I have read here from so many people. However, I have not once been told not to take them. Possibly medicine is not as advanced in South Africa as it is elsewhere in the world. I have been on blood thinners for many years, due to high blood pressure. However, after reading various posts, mentioning not taking blood thinners, I have stopped taking mine. I am still on blood pressure medication but not the blood thinners.

Thanks again for your response and wishing you all the best in your journey.

Take care,
Debs
DebbieW
 
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Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby Elizabeth » Fri Oct 13, 2017 6:43 am

I'm glad I could offer something hopefully helpful. As far as blood thinners and discontinuing use of them....oh please talk to your doctors first before stopping any medication. We are not doctors and are only offering our personal experiences. Sometimes when there are other conditions involved the risk benefit leans in favor of maybe needing a blood thinner. A smart doctor should be making that call. The risk of blood thinners for "us" is that if you were to have a bleed when your blood is thin, it could bleed more for a longer period of time. So its not that a blood thinner actually causes a bleed, but it could maybe make one worse?? Talk to your doctors and have them help you decide what is best for you.
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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Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby DebbieW » Fri Oct 13, 2017 7:16 am

Advice taken Elizabeth, thank you.

It seemed the right thing to do, but you are correct. I will discuss this with my Primary Doctor.

Take care,
Debs
DebbieW
 
Posts: 17
Joined: Wed Aug 30, 2017 1:01 pm

Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby Elizabeth » Fri Oct 13, 2017 2:59 pm

Good, better safe than sorry. I'm not sure what type of heart condition you have and blood thinners might be helpful or needed to prevent a clotting type of stoke for you. Tell your doctors your concerns and see if they can find the safest option for you.
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: CCM / DVA / Intraosseous hemangioma - WOW

Postby DebbieW » Mon Oct 16, 2017 5:55 am

I dont have a heart condition, but do have high blood pressure, so the blood thinners and blood pressure medication work hand in hand. I do take Grandpa powders for pain, which has aspirin in it, so this would still thin the blood to a degree. This is the main reason for stopping the blood thinners, due to the aspirin intake. It is not good for the stomach, so I am careful with them, but my primary doctor is aware.

I will however discuss this with her.

Take care,
Debs
DebbieW
 
Posts: 17
Joined: Wed Aug 30, 2017 1:01 pm

Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby Elizabeth » Mon Oct 16, 2017 10:16 pm

High blood pressure can increase risk of stroke...hence the blood thinners... Talking to your doctor is the best option. I've heard a lit of talk about cbd oil and its use for lowering bp. It is also a blood thinner, so I'm not sure on safety for "us". I'd ask my doctor about cbd oil too.
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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Posts: 1550
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby Michelle2000 » Tue Oct 17, 2017 2:33 am

Debbie,

I think there was a post on here a few months (or maybe longer ago) about vertebral hemangiomas, and I don't think they are related to CM. They could be causing your pain, though. Here is a thread about them (it was longer ago that I remembered...): viewtopic.php?f=16&t=1728&p=10536&hilit=vertebral+hemangioma#p10536

Best wishes,

Michelle
16 year old son with brainstem CM resected in March 2010, CM at C2-C3,
CCM2 mutation; DH, MIL, & BIL with multiples in brain and spine
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Re: CCM / DVA / Intraosseous hemangioma - WOW

Postby DebbieW » Tue Oct 17, 2017 6:26 am

Hi Michelle,

Thank you so much for the link..... very informative. Seems like it is coincidence that I have a hemangioma in the spine as well as in the cerebellum.

Really appreciate your helpfulness and kindness in responding and helping me to understand.

Kind regards and take care,
Debs
DebbieW
 
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Joined: Wed Aug 30, 2017 1:01 pm


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