Found spinal cavernoma in thoracic spine on 1/16/17

Discussions of issues related to living with cavernous angiomas

Found spinal cavernoma in thoracic spine on 1/16/17

Postby automartin » Fri Jan 20, 2017 8:03 pm

Hi all,

New here, and my head is spinning. I'm female, 39, very active mother of two.

I'd been experiencing moderate to severe left rib-to-back pain, along with complete skin numbness, for about a week and a half. Completely wiped me out, and I'm on norco to control the pain. This very same episode happened last May, for about two weeks. Doctor ordered a thoracic MRI and I got the results on Monday. My doctor referred me to a neurosurgeon but left town until next Tuesday, without calling me to discuss the results, which were posted to my online health chart:

"IMPRESSIONS: Small intramedullary lesion within the left lateral aspect of the thoracic spinal cord at the upper T7 level, as described in detail above. Cavernous malformation with minimal central hemorrhage would be the top differential consideration. There appears to be a thin rim of hemosiderin deposition around the lesion. There is internal T1 signal hyperintensity, best noted on the sagittal projections. No obvious enhancement. There is adjacent edema which extends cranially to the T5-T6 level and caudally to the T7-T8 level. There is very mild expansion of the cord.

There are no large vessels adjacent to this structure to suggest high flow vascular malformation. A focal demyelinating plaque is felt unlikely given the findings suggestive of minimal central hemorrhage and surrounding susceptibility artifact. A fulminant myelitis is also felt less likely given the focal nature of this finding in absence of lesions elsewhere throughout the cord. Recommend a short-term 6-8 week follow-up MRI of the thoracic spine."

I'm just looking for some interpretation here. I've been doing a TON of reading and I think I know what's going on. But I'm in a bit of shock.

MY interpretation is that I have a spinal cavernoma IN my spine, and because of the iron deposit around it, it has bled at least once.

Anyone have experience with similar findings? I see a neurosurgeon next Thursday, 1/26/17.
automartin
 
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby Elizabeth » Fri Jan 20, 2017 11:57 pm

Welcome,

Sorry you've joined us but glad u found us. Yes, sounds to me like ur impression is accurate. A spinal cavernous angioma with a history of bleeding and a recent small bleed. Sounds like they didn't see any others. Did they scan ur brain as well? If not, u might want to get a brain MRI. If u have the genetic type, it might show that u have more angiomas in ur brain...hopefully not, but its a possibility. You'll want to read the newly dx section to educate urself and find a list of questions u might want to ask. For now at least, general recommendations are no blood thinners of any type including aspirin, advil, aleve, omega oils in large doses, lots of essential oils....etc. No rollorcoasters, no scuba diving.
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: Found spinal cavernoma in thoracic spine on 1/16/17

Postby automartin » Sat Jan 21, 2017 12:38 am

Thank you for responding. This was the only cavernoma they found during this MRI. I had a brain, cervical and lumbar MRI last spring, which all came back normal. I have had low back pain for a decade, and was having some neurological symptoms and my rheumatologist wanted to rule out MS. I have been taking norco + ibuprofen for the pain, but I guess I'll drop the ibuprofen. I don't know why, but the "no rollercoaster advice" made me tear up. This doesn't seem real.

I summited Mt. Kilimanjaro in Aug 2014, six months after that my symptoms started. I wonder if altitude did anything to it??
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby Elizabeth » Sat Jan 21, 2017 8:34 am

That is good news if u are only dealing with one angioma... Lots of people here have "multiples" which not only means they have a greater risk of potential bleeds...they also carry a 50% risk of passing the gene into their kids. One is a very good number in my opinion. Yes, I hear you in terms of it being hard to accept as real. Pretty sure we all were shocked and scared when first diagnosed. This website and forum was a huge help to me personally. You will find the most current accurate information here. If you're on Facebook(I'm not), I've heard our group there is more active than here. You can check it out and probably find lots of others to chat with...there's only a few of us left here. ;)

The debate on altitude is kinda undecided.... with some people living and visiting high altitudes without complication and others complaining of bleeds and symptoms. I personally live at a low altitude and have gotten sick and symptomatic almost every time I go over 5,000 ft. I'm not sure if that would be considered a risk factor or not but for me personally, I'm staying at sea level mostly and that works for me. I think my trigger to cause my active bleeding and growth was my first pregnancy or delivery. Once mine became active it never really stopped and so it had to go. Spinal angiomas are more rare...I think...but there are some patient stories here.
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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Location: Los Angeles

Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby automartin » Sat Jan 21, 2017 1:29 pm

Thanks again. I did find the FB page, but I love going through all the posts here. Yes, I've read that spinal angiomas are really rare. One stat said 60,000 out of 1.5 million angiomas were in the spine. I really hope to get some information at my visit on Thurs. I'm all over the place, and usually head to worst case scenario.

One question: what lead you to believe that I had a previous bleed + a recent one? My symptoms alone? Or was it something on the MRI?
automartin
 
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby Elizabeth » Sat Jan 21, 2017 5:07 pm

Shoot...I just wrote you a long answer and it deleted it...ugh...I'll come back later and try again...
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: Found spinal cavernoma in thoracic spine on 1/16/17

Postby Elizabeth » Sun Jan 22, 2017 1:05 am

I'm not a doctor but scrutinized my MRIs a million times. So my guess is:
"Minimal central hemmorage"=a small bleed
" thin rim of hemosiderin "= old blood from old bleeding
" t1 hyper intensity"= new bleeding
"Adjacent edema"= swelling nearby...probably from the bleed.
" no large vessels adjacent "= probably not an avm
" Demylinating plaque unlikely" = not likely to be MS

And ur symptoms sound consistent with a spinal bleed in the thoracic region. I'm guessing the norco is not helping much(nerve pain often doen not respond to pain meds)and the advil could be making it worse...so stop taking the advil for sure. Ice might be helpful.

I would not be surprised if u need to look for more opinions....likely the doctor will know next to nothing about cavernous angioma. Depending on where you're at you might want to consult with Dr. Spetzler in phoenix and/or Dr. Awad in Chicago.
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: 1618
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby automartin » Sun Jan 22, 2017 2:14 am

Oh my gosh, thank you for this. It's what I've pieced together over the past week. Just wanted to try and confirm it to make sure I'm not losing my mind. I've never had to second opinion anything like this. Do I cold-call these guys' offices?
Last edited by automartin on Mon Feb 06, 2017 2:04 pm, edited 1 time in total.
automartin
 
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby Elizabeth » Sun Jan 22, 2017 3:43 am

Haha..."losing ur mind" ...a sick twisted joke to me...having lost a big piece of my brain already...lol. Yes, call their offices and they will tell u what u need to send them...and where to send. You will need several copies of ur MRIs to send one copy to each doctor u consult with.
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: 1618
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby automartin » Mon Feb 06, 2017 2:02 pm

Hello!

I wanted to update you. My doctor's office sent over a referral to Dr Awad's office, and they called me the next day (Friday) to schedule an appointment on Monday. (HOLY FAST!!).

He recommended surgery sooner rather than later, as he said I was fortunate that my two (and maybe 3 bleeds) were so "friendly". Twenty percent chance of paralysis without surgery, less than 5 with it. So I'm scheduled for March 2. He also told me to treat this area of my back as "brittle" and no working out, yoga. That was startling.

I also sent a records review to Dr. Spetzler and he concluded as well that it needed to come out. Thank you so much for recommending these two doctors. I hate waiting on medical conditions, and this helped me out tremendously!
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