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My Story of Spinal Cavernous Angioma

 

From: "Tori Smalley" pointnopoint1@excite.com
Sent: April 6, 2005

September 11, 2002 started out like most days. But as the day progressed I found I was feeling under the weather. I had a dinner date with a friend scheduled for that evening, & then we were going to go to the fair. When I got home from work I had about an hour before needing to leave to meet my friend. I considered canceling, but decided it wouldn't be enough notice. Instead I lay down for that hour, all the while thinking how much I wished I didn't have to go & how I would much rather have been able to just stay in bed.

I met my friend at the restaurant, & as we were sitting down to the table I suddenly felt very different physically than I usually felt. The first thing that got my attention was that my back on the left side felt really strange. I reached my hand around & touched my back & was stunned that I was numb - to the point that I could tell there was something touching me (my hand), but I could only just feel it. I continued to feel the left side of my body & couldn't believe that from my underarm all the way down to my toes, my entire leg, & my torso to the midline front & back were numb. In addition to the numbness I was having a lot of pain & the entire area was hypersensitive to touch of any kind. I was in for another shock when I stood up from the table & discovered that my left leg & foot were so weak I thought my leg would go out from under me with each step I took. Needless to say I was very alarmed by what was happening, & at this point I knew something was very wrong.

Even so, I went home that evening thinking I would wait and see if what was happening to my body might clear up as suddenly as it came on. Not a great decision on my part, but I kept hoping that maybe I had a severely impinged nerve in my back & that with some rest it would ease up. But, in the back of my mind I think I knew that wasn't going to be the case.

By the time I went to the Urgent Care a band of the same kind of pain I was experiencing on the left side of my body had formed all the way around my upper torso from just under the breast area to just above it. Having clothing or a chair back or anything touch me in any of those areas was horribly painful. I had also discovered that my ability to feel heat & cold on the left side was greatly altered - hot felt luke warm, & cold felt like a frozen knife blade cutting into me. When I told the people at the Urgent Care about the band of pain, they whisked me to the examining area & began connecting electrodes to my chest. I kept telling them it wasn't that kind of chest pain, but it seemed that didn't make a difference to them.

I was told my heart seemed just fine, & they had no clue what was happening to me. I was sent home with a prescription for 800 mg. Ibuprofen & told if I didn't feel better in a few days I should contact my primary care doctor. By the next day it was apparent to me I wasn't going to be feeling better from this, & I made an appointment to see my Dr. the next day. As soon as I began telling her about the symptoms & how they had come on she seemed very alarmed & concerned. She told me to go to the hospital immediately & that she would have an MRI set up for me by the time I got there. Well, I went, but the folks in the MRI department had a different timeline in mind than my Dr. did. They said having an MRI immediately wasn't possible, & scheduled one for a few days after that.

A few days after finally having the MRI (done on my brain) I was contacted by someone from the radiology department telling me they were giving me an appointment with a neurologist. I met him for the first time a day or two later, & it seemed his concern at the time was possible MS. So he scheduled some tests to either confirm or rule out that disease. The tests showed no signs of MS, & another MRI, this time on my cervical spine, was done. It showed nothing unusual, other than signs of the scoliosis I have. So I had another MRI, this time of the thoracic spine. Bingo. This time they saw something, but my neurologist wasn't sure what it was. His thoughts at that time were either Transverse Myelitis, or a cavernous angioma, neither of which I had ever heard of. In either case, he told me, the symptoms I was having might clear up within three to six months, & if they didn't clear up within that time they probably never would. The good thing about a TM diagnosis was that once it happens it would probably never happen again. The bad thing about the cavernous angioma DX was that it could bleed again, causing more damage. I decided I'd rather have the TM diagnosis. Well of course, who wouldn't! But it wasn't to be.

Two more MRIs were done of my thoracic spine & were read by two radiologist specialists. That was when the diagnosis of Cavernous Angioma was made, and it was located between T-1 and T-2.

My neurologist told me that the only treatment currently available for a CA that had hemorrhaged was surgical resection. He told me that since the CA had bled once, it would probably bleed again & there could be more neurological deficits from it. He further explained that I am at risk of developing more CAs in my brain or brainstem & told me he thought the angioma should be removed, so I agreed to have a consultation with a neurosurgeon he wanted me to see who specializes in the Gamma Knife procedure.

As it turned out, whoever set the appointment for me at the neurosurgeon's office made the appointment with the wrong neurosurgeon, which I wasn't aware of until I was there for the appointment. The neurosurgeon I saw explained to me that the CA was located in the middle of my spinal cord, & that it was also on the anterior side of the cord - meaning it is facing my chest instead of my back. He said he thought it would be more risky to try to reach it surgically than to leave it there, but he said if it bleeds again they might have to try to reach it. When I went to my appointment I just assumed that the CA would be removed & I'd never have to think about it again. So when I was given this news, I was in a bit of a state of shock. But before I left the neurosurgeon's office I had made up my mind that I was going to live my life as much like I had before the bleed as I possibly could (and I have!).

When my neurologist learned that my appointment had been made with a neurosurgeon other than the one he wanted me to see, he had an appointment made for me with the Dr. he wanted me to consult with. This Dr. specializes in the Gamma Knife procedure & explained to me that using GK for angiomas in the brain is still very experimental & that using that method as a general way to treat angiomas wasn't looking very promising. He told me that using GK on a spinal CA wouldn't be possible because the spinal cord couldn't be stabilized like the head is stabilized for the procedure on the brain. He also agreed with the first neurosurgeon I'd seen in that he thought trying to reach the angioma would be too risky.

So. That was that. My Drs. all had told me that I should do research & keep a look out for any Drs. who might be treating angiomas that were located in difficult positions such as mine. About a year later I learned about another woman, through the forum of the Angioma Alliance, who also had a CA in the middle of her spinal cord. She too had been told it was too risky to try to reach the CA, but she wasn't willing to accept that she would have to live with a potential time bomb in her spinal cord, & she, too, was doing research to find someone who could remove the CA. She learned of a Dr. at Stanford University Medical Center in California who has been removing CAs from the middle of the cord, & after consulting with him was scheduled for surgery. The CA was successfully removed, & with that I had hope this Dr. could remove mine too. My neurologist and my primary care Dr. both thought I should have a consultation with this Dr., & a request to my insurance company for an outside referral was made, which was granted. In February 2005 I went to Stanford for a consultation with the Dr. I had such high hopes he could remove my CA, but it was not to be. The Dr. told me the same thing the others had told me, but he was at least able to give me a better explanation than I'd ever been given before. He said that when a CA bleeds it expands & is easier for a surgeon to see. He told me that after a CA has bled & time passes the CA shrinks, & because mine is in the middle of the cord, is facing my chest & has shrunk since the bleed, there is too much healthy cord tissue to have to go through to find it. He said if it bleeds again it's possible it can be removed right after the bleed, because it will have expanded & there will be less healthy spinal cord tissue surrounding it.

Needless to say I was disappointed. But I was very happy I had made the trip to consult with this Dr. I now know I have done all I can to have this thing removed, & he answered questions I had never had answered by my other Drs. He also explained things more clearly to me, & recommended I have an MRI every year instead of every two years as my neurologist had recommended. In addition, he offered to review my yearly MRIs for me. So the consultation was not a total loss, by any means.

Now, two and a half years later, the only neurological deficits caused from the bleed that have changed is the band of pain around my upper torso - it cleared up after about ten days. All the other deficits are still with me, & still the same. Some days the pain & hypersensitivity is worse than other days - I have a difficult time with clothing, bedding, or other things touching me, keeping a shoe on my left foot all day, etc. The weakness in my leg & foot also varies - some days it's very weak, some days not as much. I've tried a couple of drugs for the pain - anti-seizure medicines - but have had a bad time with the side effects, & currently don't take anything for it.

I am so grateful that the Angioma Alliance exists - it has been a wealth of information, & the contact with & support from the other folks on the forum is priceless.

Thanks for reading my story!

Tori Smalley
Albuquerque, New Mexico