Hi, I'm new here. I had a hemorrhage in my spinal cord, causing a stroke, in 2002. I was given a dx of cavernous angioma and was told that it could not be removed because it was too deep into the cord and also facing my chest.

The hemorrhage left me with numbness, severe pain, and weakness in my leg on my left side from my under arm area down to my toes, and my trunk both front and back.

I was given this dx by two neurologists and two neuorsurgeons in the city where I live. Because of the risk of rebleeds, and therefore further neurological deficits with each bleed, I decided to keep looking for neurosurgeons who might be able to resect the CA.

A woman I met on a forum on a support site for people with CAs told me about a neurosurgeon at Stanford who had removed her spinal CA. She had also been told hers could not be removed and had been searching for a Dr. when she heard about this Dr. Apparantely he had a good deal of experience with spinal CAs, as well as those in the brain, and he was able to remove hers. I told my Drs. about him and asked them to send my MRI pictures to him, which they did. They asked my insurance co. for an outside referral, which was approved, and I went to Stanford to consult with this Dr. But unfortunately his opinion about my situation was the same as the other Drs. I had already seen.

Back to my search.

After a while I heard about another neurosurgeon, again through the same forum, who was considered to be the top surgeon in the country for those with CAs. Many of the members of the forum were having their CA surgery done by this Dr. I read a lot of stories by those who had had surgery performed by him, and spoke with a few people directly who had. One woman I talked to who had a spinal CA and who had her surgery with this Dr. said to me, "Why don't you send your stuff to him. What do you have to lose?"

This Dr. is Robert Spetzler, Director of Barrow Neurosurgical Institute, in Phoenix. After thinking about it for a couple of months, I figured I didn't have anything to lose. I asked my Drs. to send my MRI pictures to Dr. Spetzler, and this time they kind of looked at me like, "Oh-oh, here we go again." I told them if Dr. Spetzler gave me the same dx that everyone else had I would leave it alone and stop looking. So they agreed, and sent my stuff to him.

Four days after Dr. Spetzler received my MRI pictures and reports I received a phone call from another Dr. on his team, telling me that they did not think I had a cavernous angioma. I couldn't believe what I was hearing! They wanted me to have a 3-Tesla MRI, but we don't have that strength machine here, only the usual 1.5-T. So my neurologist had another MRI done (thinking that maybe the last one just wasn't hadn't been clear enough), this time with very fine slices, and the radiologist read the results with some new software to get the clearest reading possible. The radiologist and my neurologist still said it was a cavernous angioma, and sent the pictures to Dr. Spetzler. Dr. Spetzler responded saying he still didn't think it was a CA and wanted me to have a spinal angiogram done. My neuro doc told me they don't get very good results doing those tests here (the spinal type), so they sent me to Phoenix to have it done.

My angiogram was scheduled for July 19, 2006. When it was over, my husband and I were told that what I have in my spinal cord is an AVM and an aneurysm. At this point we were kind of expecting the AVM, but the aneurysm was a total shock.

The next day I was taken into surgery to have them both embolized. Dr. Spetzler doesn't do the embolizations, but another Dr. on his team does. It was Dr. McDougall who did mine, and he was fabulous. He told me before we went in that he was concerned about being able to embolize everything, because of where they were located. But he managed to get everything, and we were both thrilled.

He said that as far as he's concerned the AVM is obliterated. Of course the aneurysm is still there. We are going to try to keep it embolized for as long as possible, as doing surgery to remove it would mean going in through my chest and deflating a lung, etc. He said that kind of surgery would be on the level of heart surgery. He said that I may have to have that done "someday", but we will try to avoid it for as long as possible.

I have to go back to Phoenix in November for another angiogram, so they can see how everything looks. During the embolization they did scratch a vessel going around a hairpin curve, and at the end of the procedure the catheter became stuck in the glue and broke off. They decided it was too risky to try to pull it out, so they left it there. They want to look at all that.

Anyway, I'd like to know if there is anyone else out there who has either an AVM or an aneurysm - or both - in their spinal cord, who has had a hemorrhage, surgery, or not.

The surgeon who did my surgery told me that they only see about 4 or 5 cases like mine a year, so there aren't many of us out there! Sure would like to talk to someone else like me!

Thanks for sharing your story. I know there is also a surgeon who is an expert on AVMs at UCLA and we have had several patients who he treated.

You may also find the Non-Traumatic SCI forums at www.CareCure.org helpful, as well as the remaining forums at the CareCure community. How much residual paralysis do you have at this time?

Hi K*L*D,

Thanks for the link.

The deficits I have from the stroke are on the left side, from the under arm area to my toes and the trunk, numbness, severe pain, and weakness in my leg. The weakness varies, and can be affected by how much I use it, or can be affected even when not used much. The pain can also vary in degree, and is affected greatly by things like being touched by clothing, bedding, a shoe on my left foot, sitting, being touched by people hugging me, activity, etc.

It also altered my ability to feel heat and cold on the left side. Hot feels luke warm, and cold is very painful.

The surgery to embolize the AVM and aneurysm made the deficits on the left side caused by the AVM rupture ( resulting and stroke) to become worse, and also caused the right side of my trunk to go numb. Fortunately I don't have the pain on the right side that I do on the left, or the altered ability to feel heat and cold.

So other than the weakness, there is not any paralysis, per se. Otherwise, I hope I answered your question.

It sounds like your stroke was not as severe as many who end up completely paralyzed. It sounds like your pattern of deficit is like a Brown Sequard incomplete syndrome. What are you doing for the neuropathic pain? Are you seeing a physiatrist who specializes in SCI?

< physiatrist > ?

Yes, I realize I have been fortunate in not having been paralyzed. I've heard of the BS syndrome, but have not been dx with it.

Right now I am taking Topamax and Cymbalta for pain, with some good results. I've been taking the Topamax for a year. I have been on Neurontin, with very bad side effects, Tegretol, which did not help, and was prescribed Depakote but decided not to take it because of possible side effects.

Treating the pain is a never ending ordeal - there doesn't seem to be much that my PCP and neurologist are aware of that is truly effective.

A physiatrist is a physician who specializes and is board certified in physical medicine and rehabilitation (PM&R). Some are also board certified in spinal cord medicine. A consultation could be helpful.

Have you tried Lyrica for your neuropathic pain? TENS?

hey, i have an avm aneurysm in my c2/3 it ruptured Dec 28th 2005. i walked into the ER with a massive headach where i collapsed before i could be admitted. At first it paralyzed me from my jaw bone down. I spent 2 weeks in the ICU at UCLA, there i had a laminectomy of c2-6. The avm is inside my spinal cord and there were not able to embolize it. I did rehab in san diego and am home. I had radiation therapy in July to cause the blood vessels to close. the past year and a half have been rough, my husband and i recently got married (AUGUST 2006) he has been so wonderful to me, been my strenght through this ordeal. i was a senior nursing student at the time of my injury, i am back at school finishing up. will have my BSN in may. i am walking again with a cane. still have bladder issues which are frustrating, its hard to have an injury at anytime, and at 23 its really bad. I was planning my wedding, finishing up college, ready for my life to start and then my life got thrown a loop. things are working out but its still tough. a part of me feels guilty for making my husband go through this. he is only 24 and i dont want him to have to deal with a disabled wife at such a young age. he is so amazing and is my rock. i just wish that i could help him.
sorry i kinda rambled but its nice to hear others out there.

Welcome to the forum. Too bad it is not as active as some others on the web, but it is hard to find.