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    Hello - New to the Forums

    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!!
    Last edited by PointNoPoint; 27 Nov 2006, 11:35 PM.
    "When it comes to a choice between two evils, I will always choose the one I haven't tried before." - Mae West


    #2
    Tori, welcome to carecure. I share your opinion about Barrow's.

    Wise.

    Comment


      #3
      Tori. Thanks for sharing your story, scary stuff. I also had an AVM and like you say in the middle of the cord facing the chest. In my case I had several embolization attempts in different hospitals but due to the complexity the only option left was surgery. I also was lucky to finally go to Barrows and here Dr. Spetzler managed to cut out the whole AVM and stop the deterioration. The AVM left me incomplete from T4 but if he had not done the surgery which no one else by the way I was in contact with could do I would have become completely paralyzed from this level, the surgery managed to stop the negative trend I was in and I did not become worse after the surgery... I also share your feelings for Barrow and especially Dr. Spetzler. Good luck to you on the follow-up. Leif

      Last edited by Leif; 28 Nov 2006, 6:29 AM.

      Comment


        #4
        Thank you both, Wise and Leif, for the warm welcomes.

        Leif, if you don't mind me asking, I am curious about how the surgery to remove your AVM was done, since it was in the same place as mine. Was it done through your chest?

        Dr. McDougall and I have decided the best course of action for me is to keep the aneurysm embolized for as long as possible. He thinks the AVM was obliterated from the embolization in July. We'll find out for sure in Dec.

        We want to avoid surgery to remove the aneurysm as Dr. McDougall said it would be a tremendous surgery, on the level of heart surgery, as they would have to go through my sternum, remove ribs, deflate a lung and then he said the matter of getting to the aneurysm in the cord would mean that I would most likely face paralysis on some level.

        The thought of someday having to have the aneurysm surgically remove terrifies me. So I just keep hoping we can keep it embolized indefinitely. I don't, at this point, know enough about embolization to have much of an idea about whether it's realistic to think we can actually keep it embolized for the rest of my life. I'm 48 now.

        But anyway, I mostly wanted to know how they performed your surgery, if you don't mind telling me. And how did you do with it, and with the recovery, etc.?
        "When it comes to a choice between two evils, I will always choose the one I haven't tried before." - Mae West

        Comment


          #5
          Tori, no problem, ask anything. My AVM was a very complex one as they said and as I have understood by reading, the professor over here also referred to it as a mess and the worst case he had seen, but that don’t necessarily tell so much since they are rare. This was also some of the reasons they didn’t manage to “glue” off al the feeding arteries by using embolization due to the risk when navigating inside the smaller blood vessels. I had several attempts on embolization here and in a university hospital specialized on AVM’s in Paris but it did not work out and the AVM continued to expand, all in all they managed to glue of one of the main feeders but there was more of them they couldn’t reach. Lucky me the professor over here did know Robert Spetzler and did shoot him a letter, Spetzler replied after five days when he had watched the MRI images and angiograms my professor sent him on how he would like to do it… The surgery was done from the backside; they had to open up several levels of the vertebras by “laminectomy”, removal of the bones one can feel on the back “laminas” to get into the spinal canal. The reason for opening several vertebras was both for to be able to get to the source of some of the feeders to cut them off and also to be able to slightly turn the cord inside the spinal column to be able to cut out the nidus itself, the AVM was both on the surface of the cord and also intramedullary. The surgery went fine, just like Spetzler had explained in the letter he sent over here before the surgery and I didn’t loos any more functions then I had lost up to this point due to the AVM itself. Recovery went fine, for some time I think I gained some return, I am not to sure about this but I think so, but most important I didn’t get any worse and they managed to stop the expansion and a possible rupture of the AVM which can be really bad. If you’d like to read me whole experience as such with the AVM just click on my name here in this post, then choose view public profile and then click on the home page link which is a link to a site which holds my narratives as for this AVM story. The site is operated by westgate.edu and you can find many people with AVM narratives there, just browse through them and read about others experiences with AVM’s as well by clicking arterieovenous malformations. Most of them have email addresses as well if you’d like to contact some of them.

          Seems like you have a difficult one too, but embolization is a good tool to take care of those things and if Barrows recommends it I would have been confident as one could be with that approach, I think you are in the best hands there is in this world when it comes to things like this. Often when embolizing the AVM’s kind of shrink into nothing, but then again, sometimes they can come back. That is also why it is very important to monitor them for quite some time, often as long as a couple of years after interventions have taken place. In my case I did follow up MRI’s etc. after I came home and one examination half a year later, there was no need for more in my case since the whole thing was cut out as Spetzler confirmed, but like they said if I felt some changes I should call but that has not been a problem and everything is stabile since surgery. My AVM tough developed too much before it was really dealt with, left me incomplete from Th4 and are using a wheelchair in my daily living due to this. Above that I consider myself lucky compared to what would have been the result if Spetzler didn’t exist, if you know what I mean. I can recommend a good book for you here on AVM’s and approaches as for dealing with them. It is a book for neurosurgeons but it is very well written and you will understand the most of it I am sure of. Here is a link to Amazon; Vascular Malformations of the Central Nervous System.

          Ohh, here is also a informative pdf file from Robert F. Spetzler et al. "Modified classification of spinal cord vascular lesions"; http://www.thejns-net.org/spine/issu...f/s0960145.pdf

          Hope it helps.
          Last edited by Leif; 28 Nov 2006, 6:15 PM.

          Comment


            #6
            Leif, thanks so much for telling me about your surgery. I read your story posted at westgate.edu (mine has been posted there for a few months, too, on page 11). You certainly endured quite a lot leading up to your surgery. I'm sorry it took so long for you to get treatment for your AVM, but I'm very happy for you that your Professor knows Dr. Spetzler and was able to hook you up with him. I think that's incredible! That's one of those things that sometimes makes me think what a small world it is!

            It's so good that they were able to do the procedure from your back instead of going through your chest. The procedure you described is incredibly awesome, but I'm not the least surprised that Dr. Spetzler could handle it. I'm so happy for you that you didn't have any further deficits from the surgery, and that your recovery and rehabilitation went so well.

            I watched Dr. Spetzler on a t.v. program on a health channel (it was called "Dying to Live") doing a procedure where he (and the rest of his team) brought a patient's body temperature down so low that they stopped the heart from beating. (Somehow they cooled the patient's blood to below normal using ice, but now I've forgotten how they did it.) They did this purposefully so that they could remove an AVM from his brain. By cooling the blood to below body temperature and stopping the heart from beating it allowed the AVM to collapse and they could then remove it without the risk of it rupturing while removing it. Once the AVM was out they slowly warmed the blood through a machine and then the heart began to beat again. They did all this in less than an hour, so for a period of time the man was clinically "dead", and then they "brought him back", sans the AVM.

            I only mention this because it, and your surgery, are such good examples of the astonishing kinds of work Dr. Spetzler and the other Drs. at the Barrow are doing.

            I did feel like I was in very good and capable hands when I had my embolization done there in July, and I feel confident going back there next month for the follow up angiogram.

            Thanks for the book recommendation. It's pretty expensive (medical books are!), but maybe I can get a look at it at the Medical Library.

            Also, thank you for the link to the Dr. Spetzler et al Modified classification of spinal cord vascular lesions paper. I haven't read the entire paper yet, but I'm looking forward to it.

            Again, Leif, thanks again for sharing your experience with me, I appreciate it very much.

            Wishing you well and all the best -

            Tori





            "When it comes to a choice between two evils, I will always choose the one I haven't tried before." - Mae West

            Comment


              #7
              Thanks. The TV program you are mentioning here probably refers to “the Standstill Procedure” (here is a Barrow link to it; link, he has done at least 97 of those procedures it says, amazing). There is also a book on this “The Healing Blade”, it is awesome what this man can do; in fact I also bought some CD’s showing how he dealt with different types of spinal AVM removals surgically, very interesting to watch Also, up to the point when I had my surgery no one had become paralyzed because of the surgery itself performed by Dr. Spetzler on people with problems like mine. That is also a very good track record. - Good luck to you as well.
              Last edited by Leif; 29 Nov 2006, 4:43 AM.

              Comment


                #8
                Welcome to Carecure Tori.

                I hear New Mexico is a beautiful place...hope to visit your state someday.
                T12-L2; Burst fracture L1: Incomplete walking with AFO's and cane since 1989

                My goal in life is to be as good of a person my dog already thinks I am. ~Author Unknown

                Comment


                  #9
                  Thanks for the welcome darkeyed_daisy - it's nice to meet you. I hope you visit NM, it really is a beautiful state. BTW, I like your signature line - that's really funny!! ^-^

                  Leif, thanks for the Barrow link - you have good links! :-) Dr. Spetzler's track record truly is impressive, and it goes a long in way in easing my fears should I have to have surgery to resect my aneurysm.

                  Take care guys, see you around the forum!
                  "When it comes to a choice between two evils, I will always choose the one I haven't tried before." - Mae West

                  Comment


                    #10
                    Hi everyone, This is my first post. I joined this forum after reading all the compasionate post about AMV (brain). My boyfriend Joe had Avm removal surgery back in the 80's. After his surgery the fight was on. The skull flap developed staff infection and 2 years after his surgery Joe had that part of his skull replaced. To this day he still has complications. His plate was only good for 14 years and is sinking down quite a bite. Lot more to tell you. But Hi everyone, my goal here is to help a very special person in my life.

                    Comment


                      #11
                      Hello from another newbie, sailfishoney.

                      I'm sorry Joe has had a hard time since surgery, and is having a particularly difficult situation now. That has to be a very hard thing for him to go through, but how wonderful for him that he has you on his side.

                      My hubby has been my rock!

                      I'd like to hear more about Joe when you get a chance.

                      Take care,

                      Tori
                      "When it comes to a choice between two evils, I will always choose the one I haven't tried before." - Mae West

                      Comment

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