New member here with spinal thoracic cm

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New member here with spinal thoracic cm

Postby Ash » Mon Feb 20, 2017 1:08 pm

Hi All,
I'm new to this forum.
Quick background: lesion t12 found 2009. Followed with MRIs every 3 years. Was never told what it was. I was just told that it looked stable and we would watch it and make sure it wasn't growing. I was told I've probably had it since birth and if it were to grow I'd be paralyzed from the waste down. Fast forward to the past couple years. Right hand pain and tingling with numbness running up my arm. Didn't think anything of it as I work with my hands. It passed. Then the past 6 months or so major back pain so primary Dr prescribed ibuprofen in November. I didn't think much of it bc many herniated discs and degenerative disc as well as stenosis.
NYE I lost all function in my right leg with intense pain from my hip down to my toes. More MRIs and Neurosurgeon was 1/26/17. Said it needs to go asap. Still didn't know what it was. Called me back and said he wanted me to see NauroVascular. That appt is next week. Said it's Cavernoma in spinal Cord.

I went for a 2nd opinion in Boston last week. He said start conservative with steroids and hope for relief and doesn't want to operate until I can't walk into his office unless I want to be more aggressive. But from what I'm reading on here it sounds like the sooner the better bc of risks caused each time they bleed???

I'm confused. Again I see the NeuroVascular next week so that would make a 3rd surgeons opinion. And there isn't a lot about spinal cavernomas.

I have 2 kids. I'm extremely busy. Very active job. 32 years old. Not knowing exactly what is going on is the hardest part. I am walking better as time goes but it's so up and down every minute with symptoms!!

So glad I found this post. Any advice is welcomed!
Ash
 
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Joined: Sun Feb 19, 2017 7:58 pm

Re: New member here with spinal thoracic cm

Postby Elizabeth » Mon Feb 20, 2017 4:40 pm

Welcome,
I moved your post to make your own thread. Feel free to add more on the old thread you originally posted to. I just wanted to be sure that you got your own new space, and u wouldn't get mixed up with the other poster.
Anyways, I'm sorry you are having problems. First thing I noticed is, u said the doctor prescribed advil.....NO...NO!!! NO!!!! :o I personally would fire any doctor that prescribed me a blood thinner, knowing I had a cavernous angioma. Theory behind no blood thinners is this...thin blood bleeds more so if you were to have a bleed when taking blood thinners...it could be worse if ur blood was thin. That doctor is clearly misinformed. You should go to the main site and read the section for new diagnosed people...lots of good info there. We usually recommend a few things to everyone...No blood thinners of any kind(no advil, aleve, aspirin, omega oils in large doses, etc) No rollercoasters, and No scuba diving.
Sounds like you need an expert too. Where are you located? If ur east coast, you might want to check out Dr. Awad in Chicago. If you west coast, check out Dr. Spetzler (phoenix)or Dr. Steinberg(Stanford, northern CA). We are not doctors here, but only sharing our experiences. Sounds like you might have had a recent bleed, and some expert evaluations might help you figure out what to do. Spinal cms are more rare, so you will want someone familiar with what you have. Have you had a brain MRI too? If not, you might want to have one..to make sure you only have the one in your spine.
Also, this forum is more quiet these days. If you're on Facebook, you might want to check us out there...most people have migrated there. I'm not on facebook, so u won't find me there...but lots of others are there.
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: New member here with spinal thoracic cm

Postby Ash » Mon Mar 06, 2017 6:17 pm

Hi,
Thank you so much for your info! I would be closer to Chicago but even that would be a 14 hour drive, not sure on flight. So either of those surgeons I'd have to fly too. The Vascular Neurosurgeon I saw last week also said he wouldn't remove my cav unless I was literally paralyzed and wheeled in. He said the risk and recovery time would be worse for me if we were to remove it now. I'm still debating on seeking out either of those specialists that you mentioned for opinions from surgeons that have experience with this specific disease. I feel like the first on you mentioned, I saw offered a second opinion program via online but I'm unable to find the link. Also curious about the other dr as well. If anyone can point me in the proper direction that would be appreciated! I'm trying to learn as much as possible. I kind of felt like I knew more about this than the surgeons. Although, ultimately it's their job to know how to remove these things. Who's job is it to educate their patients?

Also, I should mention I am waiting to hear back if insurance will allow MRI of the rest of my spine and my brain. The Boston dr said "why go looking for something you don't need to know is there". Some people feel that way, however I am not that kind. If there's something there it'll explain some things just as my T12 Cav has. IF there isn't anything there, well I'll feel some sort relief I assume.

Thanks for listening, reading, responding.
Hope all is well with everyone today!
Ash
 
Posts: 2
Joined: Sun Feb 19, 2017 7:58 pm

Re: New member here with spinal thoracic cm

Postby Elizabeth » Mon Mar 06, 2017 8:01 pm

Yes, unfortunately we...the patients....often know more about angiomas than most of the doctors. That's why getting a real expert opinion is so valuable. You can mail ur scans to Dr. Spetzler and they will review and call u back. Dr. Awad, from what I hear, needs you to visit his office to get his opinion. If I was u I would probably send my stuff to Dr. Spetzler and depending on his opinion...go visit Dr. Awad. I felt better after I got several agreeing opinions from experts. And yes, it might very well be better to watch n wait....sometimes that's the case, but if its not the best idea...I wanted to be proactive depending on the risks of waiting and surgery. My risks were high either way. It was hard for me to decide and I took about a year to actually decide...but I have no regrets even with my complicated surgery and long recovery. You can call Dr. Spetzler's office and they will tell u what to do to get his opinion if ur interested.
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: 1556
Joined: Mon Sep 27, 2010 6:49 pm
Location: Los Angeles

Re: New member here with spinal thoracic cm

Postby Michelle2000 » Fri Mar 17, 2017 3:07 am

Ash,

I hope you are able to get the full MRI. You need to know. Whether you have multiples could affect your decision on surgery. It also could indicate whether you have the familial (genetic) form and whether you could pass this on to your children. There are lots of reasons to know!

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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Michelle2000
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