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!

Wish I could help..... ...mine was a brain aneurysm, and all of the people I know are people with brain aneurysms, yours is different than what I have heard over the last year. I'm glad you have a good fighting attitude, and know to get other opinions and so forth, keep your chin up....

Thanks for the encouragement, Mr_Torch, I appreciate it. I guess any of us who have these needs that, regardless of where they're located, eh?

Sounds by your post as if yours is gone, and if so, hurray for you!

Best,

Amethyst_Myst

I definitely can relate to your message. Wish I could offer you advice and information. However, I had a brain aneurysm(ruptured) and the AVM(resected) was also brain related.
I wish the best possible out come for you. If you think I might can answer any of you questions feel free to let me know.

Deborah

Thanks, Deborah.

Best,

Tori

Tori,
If you get a chance if you want to send me a privaate message with your email address. I might have some site addresses to send you.

Hope you are doing well today.

Deborah

I just wanted to tell you that I found a few sites on spinal info, but I can't send them without your E-mail add., if you want me send me your add. Mine is : Firefly72025@cs.com I need to know what part of your spine and the exact diagnosis name to really find out?? If you want me too?? There is a lot of helpful info. out there!! I have found so much that has help me with my "Annie"!! A lot to learn!!! I hope you are doing ok, keep us posted!! As always in my prayers, Love Tricia!!

Drink lots of water & eat bluberries!!