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

Discussions of issues related to living with cavernous angiomas

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

Postby Elizabeth » Mon Feb 06, 2017 4:50 pm

Wow! Exciting and scary altogether. I'm glad u found the right experts quickly... That saves a lot of grief. Let us know how it goes.
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
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby waschau » Tue Feb 07, 2017 8:32 pm

Hello! Boy reading about your story is de ja vu for me. I had one growth in my spinal cord T3/4 region removed 2 1/2 years ago. I can recall the pain prior to surgery, I could barely breath until the prescribed me gabapentin. My final episode was so severe that if I didn't have the surgery I would have gone paralyzed and having the surgery I had a chance of not walking out of there. I would love to chat with you over the phone if that is something you would be ok with. I am a mother of twin girls, full time career person. I will be honest, this affected my life forever. No one really prepared me and the way I saw it, it was out of my control, I kept positive and I have the ability to walk, however, with limitations.

I am here for you, let me know if you would like to chat.
Theresa Waschau
California
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby automartin » Wed Feb 08, 2017 1:53 pm

Oh wow! I didn't think I'd find someone with such a similar story. Yes, I would love to chat. I'm really struggling. Both mentally and trying to control the pain. I was on 900 mg gabapentin/day and it hasn't been doing much. Trying to keep my norco script going, which seems to take a dent out of the pain, but with all the weird legal regulations, that's been a challenge. Right now, I'm experiencing a horrible nerve-y pain that zings from my back to my stomach area. It's relentless and comes on like contractions. Sometimes, 2-3 times in a row. It's awful.

Walking has been fine for me so far, but my legs felt strange last night. Not tingly. But just ... weird. Dr Awad said to get my butt into the ER for anything to do with my legs, bowels or bladder. SO far nothing has seemed ER-worthy.

I'm in Michigan and would love to talk. You can email me at juliehurley04@gmail.com to exchange info. Thank you!!!
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby Trezika » Fri Apr 07, 2017 5:20 am

hello
I was diagnosed with a CM on T1 in 2006. I had No Pain prior to the surgery. They found it because I had leg tremors, especially on my right side. It would bleed and then when the blood was absorbed in my system, the tremors calmed down. Then the cavernoma bled again. They recommended that I have it removed or I may have permanent damage , which may lead to paralysis. The NS said it was microsurgery, he did not mention that they would do a laminectomy. I put my faith in them. The surgery was a success, because they removed the cavernoma, but I've been in pain, muscle spasms ever since. I told one of the doctors that assisted the surgery about my pain. He replied" we removed the cavernoma, you can walk, your pain is not my concern.. there was no coordination with a Pain Management team, no Physiotherapy. If someone is going to have surgery, pls ask these questions. After the surgery, I have itching and spasms, that wrap around from my back to the front. My spine feels like there is a metal rod in it( they didn't do a fusion). I saw the NS, he said their job is done, go see your neurologist. The neurologist, said to see the surgeon. My General Practioner closed his practice. I felt totally lost. The last time I went back to see the neurosurgeon, he was a no show, so I was seen by another NS. He sent me for another MRI, which I found out at the time of the test was of the cervical area. I didn't understand why and panicked.
I have not gone back since. However, I now have a nodule on my forearm which measures Almost 3.5 in x 2 in.
I am wondering if it could be an arteriovenous malformation ( Sp?). I've had an ultrasound and X-ray done. My local hospital wants an ultrasound done at their hospital. I'll only have it done in 3 months. Has anybody with a cavernoma had an AVM?
Thanks
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby Elizabeth » Sat Apr 08, 2017 12:38 am

Welcome Trezika,
I'm sorry your getting the run around and have pain. That doctor that said ,"you have pain, not my concern." Ugh!!! Yuck!!! Bad guy! Resulting nerve pain should be his concern, but his attitude is not all that rare. Sounds like you might have nerve pain. Lots of others have it here. You can read on the main site about it. It can be called CPS(central pain syndrome). Its a fairly depressing, frustrating diagnosis because well it hurts, you hurt, and there's little to no research, treatment, or anything that helps...I'm sorry. Hopefully you don't have it, but maybe you can ask any of the doctors you see..they all sound terrible...so maybe start over with some nicer ones. I've been through a ton of doctors and ended up settling on the nicest ones that will at least listen and try to help me. I wish I had better news or advise....if you need to vent were here. You are not alone.
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 Trezika » Sat Apr 08, 2017 3:17 am

Elizabeth
Thank you so much for your reply. I will definitely look up CPS.
T
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Re: Found spinal cavernoma in thoracic spine on 1/16/17

Postby PattiG » Sat Apr 08, 2017 3:51 pm

Hi & welcome, Trezika.

What a nightmare you've been through!
As Elizabeth said, it's unfortunately not uncommon. I highly agree getting a fresh start w/ new drs. would be a good direction.
Yes, pain should be included among discussions w/ our neurosurgeon's as a possible deficit when having surgery. Unfortunately, it seems to be overlooked.
Nerve pain, AKA central pain syndrome, CPS http://www.angiomaalliance.org/pages.as ... 459&id=369 is complex, poorly understood & often overlooked. Too many HCPs, including pain management, know little to nothing about it.
Without overwhelming yourself more, research CPS so that @ appts. w/ your new medical team :) you can discuss and ask questions to hopefully get intelligent, compassionate answers.

Best wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
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