PointNoPoint
11-27-2006, 10:33 PM
Hi everyone. My name is Tori. I'm new here and wanted to introduce myself. I suppose I should also tell you how I it is that I came to have a SCI.
The symptoms came on suddenly, on 9/11/2002. It started with the left side of my body from my under arm area to my toes and my trunk, all both front and back, becoming numb, my left leg and foot becoming weak, severe neurological pain setting in, and my ability to feel heat and cold in those areas being altered.
After having all the usual (what I soon learned were the "usual") tests to rule out certain disorders, such as MS, lupus, lyme disease, etc., the neurologist told me he thought I had either transverse myelitis or cavernous angioma at the T-1, T-2 level of my spinal cord. In order to make a definite DX he ordered another MRI.
The neurologist finally DXed me as having a spinal cavernous angioma, and he said it was in the middle of the cord and was also anterior. He told me that once an angioma has bled that they will usually continue to bleed, and thus continue to cause neurological deficits, which can include paralysis. He said that there is no known cure and that the only known treatment is to surgically resect those that have been known to have bled. He said he knew of a neurosurgeon who removes cavernous angioma and made an appointment for me to meet with him.
When I met with the neurosurgeon, however, my hopes of getting rid of the CA were dashed when he told me that it was too deep into the cord and that the risk of paralysis in trying to reach it were to great. I was shocked that it couldn't be removed and that I had to live with it.
The neurologist then suggested I meet with a Gamma Knife specialist, which I did. But that Dr. told me the GK procedure wasn't being done on spinal patients, and was only in the experimental phase for those with CAs in their brains.
I have to admit I was very disappointed. But I decided that maybe I had to live with that menacing little "time bomb" or maybe I didn't. I decided that maybe it was just a matter of finding "the right" neurosurgeon to help me, and that I would keep looking for one.
I became a member of the only national not-for-profit organization for people with cavernous angioma and participated on their forum, and also did volunteer work for them. One of the other members with a spinal CA told me about a neurosurgeon at Stanford Hospital in CA who removed her CA, which was also in a bad place. I asked my PCP to put in for an outside referral with my insurance co. for a consultation with this Dr., which was approved, and I went to Stanford for a consultation with him. But, after looking at my latest MRI pictures and reports, he had the same opinion that the other two neurosurgeons had.
So, it was back to researching.
After a while I noticed the name of a particular neurosurgeon kept popping up amongst people with cavernous angioma and they were saying that he is considered to be the neurosurgeon in the country for those with CAs. I was hearing that people went to him for surgery from all over the country, and from all over the world.
I did some research into this neurosurgeon and decided he was the Dr. for me. I asked my PCP to send my MRI pictures and reports to him, and I sort of got the feeling that she agreed just to kind of appease me, thinking we'd get the same reply we usually got. I couldn't blame her, I wasn't holding my breath, either.
I attended the annual conference for the cavernous angioma organization and had the opportunity to hear this neurosurgeon speak, as he was their keynote speaker. It was impressive, as he is the director of the Barrow Neurosurgical Institute in Phoenix, AZ. I was very favorably impressed with his talk and his presentation, and I was very happy that I had chosen to send my information to him.
A couple of weeks before the conference, just several days after my PCP sent my stuff to him, a Dr. from Dr. Spetzler's team called to tell me that they had reviewed my MRI pics and they did not think I had a cavernous angioma. I could not believe what I was hearing!! I just couldn't believe it!! They wanted me to have a 3-Tesla MRI, but there is only one in the city where I live and it is at the university, used only in research (and I live in the largest city in the state). So my neurologist had another MRI done, with very fine slices, and the radiologist read it with their new software, which also helps get a very fine reading. The radiologist and my neurologist were still saying that I had a cavernous angioma.
My neurologist sent off this latest MRI to Dr. Spetzler, and several days later I received a phone call telling me that they wanted me to have a spinal angiogram. My neurologist told me they don't have good results doing those here (my guess is because they don't see many patients with these types of spinal problems), and so I was sent to the Barrow to have the angiogram.
Unfortunately Dr. Spetzler doesn't do angiograms, but a terrific Dr. from his team did it - Dr. McDougall. It was done on 7/19/2006, and when it was finished Dr. McDougall told my husband and me that what I have is an AVM and an aneurysm. It was the AVM that hemorrhaged in 2002 and caused me to have the stroke.
The next day I was taken into surgery and Dr. McDougall embolized both the AVM and the aneurysm. He was concerned about being able to get all of it done, because of their locations - being in the middle of the cord and also facing my chest. But he managed to embolize all of both of them, and we were so happy.
They did scratch a vessel with the catheter going around a hairpin curve, and also at the end of the procedure the catheter became stuck in the glue and broke off. They decided it was better to leave it than to try to pull it out. They had warned us that either or both of these things could happen.
The symptoms I had before the surgery were made a little worse, and the right side of my trunk became numb afterwards, and has since developed the same kind of pain I have on the left side. But that's okay, because I know it could have been much worse - I'm happy I wasn't paralyzed. For the first couple of days after the surgery I could barely lift my left let up a couple of inches off the bed, and we were really worried. So the deficits I have I know I can live with.
I have to go back to the Barrow next month, Dec. 2006, for a follow up angiogram.
I can't ever say enough about the doctors and nurses at the Barrow. They are fabulous there, and I owe a great deal of my life to them!! :applaud:
The symptoms came on suddenly, on 9/11/2002. It started with the left side of my body from my under arm area to my toes and my trunk, all both front and back, becoming numb, my left leg and foot becoming weak, severe neurological pain setting in, and my ability to feel heat and cold in those areas being altered.
After having all the usual (what I soon learned were the "usual") tests to rule out certain disorders, such as MS, lupus, lyme disease, etc., the neurologist told me he thought I had either transverse myelitis or cavernous angioma at the T-1, T-2 level of my spinal cord. In order to make a definite DX he ordered another MRI.
The neurologist finally DXed me as having a spinal cavernous angioma, and he said it was in the middle of the cord and was also anterior. He told me that once an angioma has bled that they will usually continue to bleed, and thus continue to cause neurological deficits, which can include paralysis. He said that there is no known cure and that the only known treatment is to surgically resect those that have been known to have bled. He said he knew of a neurosurgeon who removes cavernous angioma and made an appointment for me to meet with him.
When I met with the neurosurgeon, however, my hopes of getting rid of the CA were dashed when he told me that it was too deep into the cord and that the risk of paralysis in trying to reach it were to great. I was shocked that it couldn't be removed and that I had to live with it.
The neurologist then suggested I meet with a Gamma Knife specialist, which I did. But that Dr. told me the GK procedure wasn't being done on spinal patients, and was only in the experimental phase for those with CAs in their brains.
I have to admit I was very disappointed. But I decided that maybe I had to live with that menacing little "time bomb" or maybe I didn't. I decided that maybe it was just a matter of finding "the right" neurosurgeon to help me, and that I would keep looking for one.
I became a member of the only national not-for-profit organization for people with cavernous angioma and participated on their forum, and also did volunteer work for them. One of the other members with a spinal CA told me about a neurosurgeon at Stanford Hospital in CA who removed her CA, which was also in a bad place. I asked my PCP to put in for an outside referral with my insurance co. for a consultation with this Dr., which was approved, and I went to Stanford for a consultation with him. But, after looking at my latest MRI pictures and reports, he had the same opinion that the other two neurosurgeons had.
So, it was back to researching.
After a while I noticed the name of a particular neurosurgeon kept popping up amongst people with cavernous angioma and they were saying that he is considered to be the neurosurgeon in the country for those with CAs. I was hearing that people went to him for surgery from all over the country, and from all over the world.
I did some research into this neurosurgeon and decided he was the Dr. for me. I asked my PCP to send my MRI pictures and reports to him, and I sort of got the feeling that she agreed just to kind of appease me, thinking we'd get the same reply we usually got. I couldn't blame her, I wasn't holding my breath, either.
I attended the annual conference for the cavernous angioma organization and had the opportunity to hear this neurosurgeon speak, as he was their keynote speaker. It was impressive, as he is the director of the Barrow Neurosurgical Institute in Phoenix, AZ. I was very favorably impressed with his talk and his presentation, and I was very happy that I had chosen to send my information to him.
A couple of weeks before the conference, just several days after my PCP sent my stuff to him, a Dr. from Dr. Spetzler's team called to tell me that they had reviewed my MRI pics and they did not think I had a cavernous angioma. I could not believe what I was hearing!! I just couldn't believe it!! They wanted me to have a 3-Tesla MRI, but there is only one in the city where I live and it is at the university, used only in research (and I live in the largest city in the state). So my neurologist had another MRI done, with very fine slices, and the radiologist read it with their new software, which also helps get a very fine reading. The radiologist and my neurologist were still saying that I had a cavernous angioma.
My neurologist sent off this latest MRI to Dr. Spetzler, and several days later I received a phone call telling me that they wanted me to have a spinal angiogram. My neurologist told me they don't have good results doing those here (my guess is because they don't see many patients with these types of spinal problems), and so I was sent to the Barrow to have the angiogram.
Unfortunately Dr. Spetzler doesn't do angiograms, but a terrific Dr. from his team did it - Dr. McDougall. It was done on 7/19/2006, and when it was finished Dr. McDougall told my husband and me that what I have is an AVM and an aneurysm. It was the AVM that hemorrhaged in 2002 and caused me to have the stroke.
The next day I was taken into surgery and Dr. McDougall embolized both the AVM and the aneurysm. He was concerned about being able to get all of it done, because of their locations - being in the middle of the cord and also facing my chest. But he managed to embolize all of both of them, and we were so happy.
They did scratch a vessel with the catheter going around a hairpin curve, and also at the end of the procedure the catheter became stuck in the glue and broke off. They decided it was better to leave it than to try to pull it out. They had warned us that either or both of these things could happen.
The symptoms I had before the surgery were made a little worse, and the right side of my trunk became numb afterwards, and has since developed the same kind of pain I have on the left side. But that's okay, because I know it could have been much worse - I'm happy I wasn't paralyzed. For the first couple of days after the surgery I could barely lift my left let up a couple of inches off the bed, and we were really worried. So the deficits I have I know I can live with.
I have to go back to the Barrow next month, Dec. 2006, for a follow up angiogram.
I can't ever say enough about the doctors and nurses at the Barrow. They are fabulous there, and I owe a great deal of my life to them!! :applaud: