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  • Cervical AVM & SCI

    This is my first time posting on this website except for an e-mail to Dr. Young.

    I am a 37 year old who was diagnosed with an intermedulla spinal AVM at the C2-C4 level in May 2004. Neurological specialists at Johns Hopkins and Hershey Medical Center were unwilling to take the risk of surgically removing the AVM. They believed that there was a 40% chance that surgery would leave me a Quadriplegic on a ventilator. The only recommendation that they could make was to consult with Dr. Spetzler at the Barrow Clinic in Phoenix, Arizona. He felt that the risk of a catastrophic hemorrhage was much higher then surgery. So in December 2004, after a difficult surgery it was successfully removed. Despite the successful surgery, I am paralyzed on the right side of my body (and thus wheelchair-ridden).
    My symptoms all began after I had my first spinal stroke or bleed in 1991 (which would not be discovered until May 2004). It caused nausea, syncope, and muscular weakness in the legs. As a result of a missed diagnosis a doctor removed my gallbladder in 1992. After the surgery I had a lot of pain up my back and into my shoulder area especially the right shoulder. One week post-op I began having debilitating pain in the stomach and diaphragm area which radiated through my chest and up my back into the shoulder and neck area that lasted for approximately a half hour to one hour. This would happen several times a week off and on for several years. I had other symptoms as well like nausea, weakness and the feeling like I was not digesting properly (a sense of fullness generally in my stomach and intestines). This resulted in an inability to sustain work for a period of approximately 2 years. After treating symptoms, a multitude of physicians got me to a level where I could work, with much difficulty.

    In 1999 I suffered yet another spinal stroke which was misdiagnosed. This resulted in an inability to work for about another year and a half. Again, doctors were able to treat symptoms which allowed me to get back to work, with daily difficulties. In May of 2004, while attempting to find answers to my pre-existing, as well as new, symptoms, (weakness on my left side and decreased sensation) an arteriovenous malformation (AVM) was discovered at the C2-C4 level within my spinal cord. They also found old blood in the Area Postrema which could explain the nausea that I felt after my first bleed.

    Today I have problems daily on and off with spasms in my stomach area (this includes where the gallbladder was, the intestines and the diaphragm). I also have spasms in my mid back (behind the diaphragm/stomach area) up to my neck. I have now come to realize that spasms I feel in these areas are a weakened version of the debilitating pain I used to get years ago.

    I know that the spasms I feel in my stomach and the spasms and pain I feel in my back and neck are related. When the spasms happen I feel not only pain but weakness through my whole body (like things are not working properly) and a general feeling of malaise.

    If I massage or put pressure on the knots/spasms in my stomach or in my back or neck they release and my digestive system starts to work (juices begin to flow), my circulation flows (I will feel warmth of blood flowing through my legs) and the pain and spasms in my back, neck and stomach stop. I do not know which causes which the spasms in the stomach or the spasms in the back/neck.

    I am taking 1800 mg of Neurontin a day along with 80 mg of Baclofen, 4 mg of Zanaflex, 1.5 mg of Ativan and 75 mg of Zoloft a day. I’m not sure which meds are helping or not. I’m sure that they are to a certain extent but not enough. Has anyone had similar symptoms? Any suggestions?

    Debbie

  • #2
    Deb,

    As you know, I don't have many useful therapeutic suggestions for you. I was hoping that others who have had similar responses to arteriovenous malformations (AVMs) can post and share their experience and what works for them.

    Let me try to encourage the discussion and comment in general. AVMs are often associated with pain in their early phases. In fact, one of the frequent early manifestations of AVM is the presence of pain. The cause of this pain is not clear.

    AVMs are vascular anomalies where there is an abnormal shunting of arterial blood into the venous system, bypassing the capillaries. While most people (including many doctors) believe that this causes ischemia by shunting arterial blood and bypassing the tissue, the more significant cause of ischemia is the increase in venous pressure. Tissue blood flow is determined by the difference of arterial-venous (AV) pressure. When venous pressure is high, less blood flows. When venous pressure approaches arterial pressure, blood flow stops. So, an AVM causes widespread reductions in blood flow of the spinal cord, including places that may be quite far from the AVM. Increase in venous pressure also cause enlargement of the veins. In some cases, this enlargement may be big enough to compress the spinal cord, adding to the ischemia. That is one of the reasons why an AVM in the spinal cord is almost always associated with very large tortuous veins on the surface of the spinal cord. Such enlarged veins may run up and down the spinal cord for long distances away from the AVM itself.

    In your case, you had yet another complication of the AVM. You had a hemorrhage. Blood of course normally is contained by blood vessels. When it gets into the tissue, it causes inflammation and swelling. The combination of ischemia from the AVM, the inflammation and swelling (edema) to the cord may be the reason why many people lose function when they have a hemorrhage associated with a spinal AVM. Blood collect in the subarachnoid space and causes arachnoiditis (inflammation of the lining of the spinal cord) with consequent adhesions. Arachnoiditis causes pain, again for reasons that are not understood. There is no easy way to treat arachnoiditis because the process of surgery may cause more arachnoiditis, damage to the spinal cord, and pain.

    Generally, removal or occlusion of the AVM will markedly eliminate or reduce pain. I have seen occlusion of AVMs result in remarkable return of function, even in people with long-standing AVM's that have been present for years. The return of function is often quite rapid, occurring over a period of several hours or days. However, depending on the damage to the spinal cord, some of the loss may be be reversed by the elimination of the AVM. Arachnoiditis may be the reason why you are having all these abdomenal symptoms. In my opinion, however, you should not be having any more pain from the AVM itself (since it was removed). I think that it is likely the pain is occurring because you have continuing arachnoditis and other causes of ischemia to the spinal cord.

    Wise.

    Comment


    • #3
      Thank you so much for your reply and futher explanation of the condition.

      Debbie

      Comment


      • #4
        Debbie, in my case I have found that almost always spasms were a sign some muscle was coming back to life. With that in mind I cut out the baclofen slowly and use valuim, mainly at night, so I can get some rest. Although when I had spasms 14 years out and on the weak side of my stomach I should have thought referred something. It was the only sign I was about to spike a temp of 105 due to a kidney infection.

        I'd write down your meds, what they are supposed to do for you and whether you think they are doing that. Then talk to your doc if you feel you might want to try lowering doses.

        And, much as many think it's borederline quackery, if a PT also does Cranial-sacral work you might try that as it sounds like the releases you get from massage.
        Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

        Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

        Comment


        • #5
          Originally posted by Wise Young
          Deb,

          As you know, I don't have many useful therapeutic suggestions for you. I was hoping that others who have had similar responses to arteriovenous malformations (AVMs) can post and share their experience and what works for them.
          I know Deb from before, but I can’t advice on medications etc. The only meds I take is Nurontin 3x600mg/day for pain, and that pain is basically in my right side from T4 down to my groin on the same side. No big problems with spasm etc.

          Maybe Sue’s advice was a good one?

          Take care Deb, Leif

          Comment


          • #6
            Sue,

            Thanks for your reply. When you had spasms and cut back on your Baclofen, didn't the spasms get worse? I know that spasms are a good sign that there is return but is also hard to function if you have constant spasms. That is where I think that the Baclofen helps so my spasms are not as extreme. But you're right I need to figure out which medicines are helping.

            Thank you for the information about the cranial sacral massage. I will bring it up to my physical therapist who comes and does trigger point on me.

            Thanks again,

            Debbie

            Comment


            • #7
              Leif,

              Thanks for your continued support

              Debbie

              Comment


              • #8
                Originally posted by Deb
                Sue,

                Thanks for your reply. When you had spasms and cut back on your Baclofen, didn't the spasms get worse? I know that spasms are a good sign that there is return but is also hard to function if you have constant spasms. That is where I think that the Baclofen helps so my spasms are not as extreme. But you're right I need to figure out which medicines are helping.

                Thank you for the information about the cranial sacral massage. I will bring it up to my physical therapist who comes and does trigger point on me.

                Thanks again,

                Debbie
                The reason I slowly cut back on the baclofen was to A) not go into seizures and B) to see if my spasms increased. At max I was taking about 130mg a day over 4 doses. I literally was getting about 20 minutes sleep at a time from leg kicking spasms that were very strong. I cut back 10 mg a week until I got to about 50mg a day and then cut back by 5mg a week. All with my physiatrist's approval. Do not cut large doses of any anti-spasm medicine down without one of your doctors knowing about it.
                My spasms stayed the same all through this mess. I had an MRI to look for a syrinx in my lumbar area since, yes, this can't happen.. , my hamstring muscles would contract and my knee would extend. I actually found 2 glasses of red wine helped my spasms better than the baclofen. My doc was not surprised. The MRI came back negative so we tried Zanaflex. Great drug for many but I had problems with it even at 4 mg a day doses. At that point we tried Valium (diazapam). During this time I also got a standing table. My spasms started while I was still in the acute hospital in Germany where I was on a tilt table 3 to 4 times a week. They weren't too bad and the resident put me on 40 mg of baclofen and warned me that more could hinder or hide recovery. There were no papers on this at the time. So I can't say the standing table was the reason the spasms eased up considerably. I started taking 2 mg of diazapam at night and between that, continued outpatient PT including Frankenstein like walking with HKAFOs they really smoothed out. It was a couple years before I upped the dose to 5 mg. Diazapam is a drug the body accomadates to so rising levels is not unusual.

                Recently at a symposium sponsored by Johns Hopkins, Dr John McDonald said the same thing. The facilatator also warned patients not to immediately toss their baclofen but to discuss this with their doctors.

                I also found that the 2A trial I was in for Fampridine helped enormously. I have a contracture in my right hand. I'd had several rounds of Botox shots until one muscle just died. The Fampridine loosened up the contracture within an hour of taking it. I also gained a lot of strength going from 3 or 4 knee bends in the parallel bars to 21 almost overnight. I had no problems knowing when I was on the drug and when I was off it. My doc put me on the compounded formula for several years. I quit, slowly, due to another medical problem. I am looking for a good compounding pharmacy now to go back on it. Already have the ramping up prescriptions.

                Hope that answered your questions. BTW, I had a spinal stroke at the C4 level and 3 hours later I was totally paralyzed from the neck down and intubated. I never lost touch, propriosenation or vibratory senses. I'm now, functionally, a C5/7 incomplete ASIA C/D depending on the day. Lately a lot of C due to side issues.
                Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                Comment


                • #9
                  Sue,

                  Thank you so much for sharing your story. It is very helpful. I have found that when I increase my baclofen or decrease it by 10 mg a day it doesn't really make much difference. I have been trying some other medicines so I haven't attempted to decrease the baclofen yet.

                  So did you find that the standing board helped you a lot the second time you began using it. I am also interested in knowing more about the Fampridine. What is it and what does it do for you?

                  Also you mentioned that you had a spinal stroke. Do you mind me asking what caused it? You also mentioned that you were paralyzed from the neck down and intubated. What is your status now? Does that mean that you are still on a ventilator? I hope these questions do not offend. I am not very knowledgeable about different types of spinal injuries and recovery because I have just begun to talk to people who have spinal injuries through this web site.

                  At the end of your message you mentioned that you are C5/7 incomplete ASIA C/D. I am not very knowledgeable in these terms either. No doctor has ever told me what my status is.

                  Again, I really appreciate your response. It helps me a lot. I look forward to hearing from you soon.

                  Debbie

                  Comment


                  • #10
                    Originally posted by Deb
                    Sue,

                    Thank you so much for sharing your story. It is very helpful. I have found that when I increase my baclofen or decrease it by 10 mg a day it doesn't really make much difference. I have been trying some other medicines so I haven't attempted to decrease the baclofen yet.

                    So did you find that the standing board helped you a lot the second time you began using it. I am also interested in knowing more about the Fampridine. What is it and what does it do for you?

                    Also you mentioned that you had a spinal stroke. Do you mind me asking what caused it? You also mentioned that you were paralyzed from the neck down and intubated. What is your status now? Does that mean that you are still on a ventilator? I hope these questions do not offend. I am not very knowledgeable about different types of spinal injuries and recovery because I have just begun to talk to people who have spinal injuries through this web site.

                    At the end of your message you mentioned that you are C5/7 incomplete ASIA C/D. I am not very knowledgeable in these terms either. No doctor has ever told me what my status is.

                    Again, I really appreciate your response. It helps me a lot. I look forward to hearing from you soon.

                    Debbie
                    Going back to a standing table is one of the best things I ever did. Just guilty of trying to find time to do it religiously.

                    Fampridine is the brand name for 4-aminopyridine that is being developed by Acorda Therapeutics. You can use the site's google search for 4-AP and get tons of information on it.

                    The best doctors in Germany, Georgetown, Walter Reed and Johns Hopkins cannot answer what caused my ischemic (lack of oxygen to the cord)stroke. It just hit quickly and painfully a week short of my 33rd birthday. I'm amazed that anyone can walk away from one with not much treatment. I loaded full of methylprednisolone and was extubated about 8 days later. ASIA is how spinal injuries are graded. A is a complete injury with no feeling or movement at the lowest sacral level-S5. ASIA E is normal. I have weight bearing ability and can do standing transfers with help. My left arm is pretty normal while I am missing part of a tricep in my right. Both hands are fairly weak but I am a 2 or 3 finger typist without a splint.

                    If you have spinal paralysis or damage to the cord from certain diseases like TM a neurologist or physiatrist should have given you a full breakdown of your status as some levels have certain problems associated with them.
                    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

                    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

                    Comment


                    • #11
                      Sue,

                      Thanks again for your response. I’m sorry it took so long for me to respond back. I really enjoy conversing with you. You have given me a lot of good information. As you can see I have not had many responses to my post. I would like to continue talking with you. Maybe it would be easier to talk via private messages. If you feel comfortable with that.

                      I’d like to know more about how you are doing. I hope to hear from you soon.

                      Debbie

                      Comment


                      • #12
                        Hi Deb,

                        My paralysis is due to an AVM at T2 level. I'm 56 and I've been paralyzed 3 years now. I was so sure that I had MS. I just fit the symptom list and while waiting for an appointment for an MRI to either rule in or out the MS, I got up one morning and before the day was over I was paralyzed. Before they could diagnose it and do the necessary lamenectomy to remove the AVM the damage was done and I was paralyzed from my waist down.

                        I never had a bleed. Apparently it would swell up and affect me at times and then go back down. Thank God and Dr. Scott Shapiro (of Lance Armstrong's surgery) that I came out of my lamenectomy without suffering any or all of those consequences that they warned me about just before going under.

                        Spasms, my spasms are so bad. They interfere with everything from transfers to trying to cath. I'm like trying to cath a Venus Fly Trap. The slightest bit of stimulation sends my legs into spasms although I take about 80 mgs. of oral Baclofen a day. I have taken as much as 140 mgs. in a day but the added dosage doesn't seem to help that much. I have been offered both medical marijuana and Valium but have chosen not to go that route. Just not convinced that more pills are the answer without too many other side effects.

                        When I transfer into bed until my legs can be bent to break them, the spasms come up into my stomach and diaphram and take my breath. I can't lay flat at all. I have to sleep in a semi sitting position otherwise I just lay in waves of spasms. My feet have to be strapped to the footplate of my wheelchair all of the time because they spaz straight out, my back arches, my bottom slides forward to the edge of my chair and I would slide right out of it were I not belted in both feet and lap.

                        Last fall I did go to Indianapolis to the IU Med Center and had a Baclofen Pump trial done. I was diagnosed, on a scale of 1-10 with 10 being the worst for spasticity and rigidity, as an 8. After the injection, I have to say that it was so wonderful to go for practically an entire day just sitting normally, peacefully. I'd forgotten what that felt like. I could ride in the van without fighting to stay back in my chair everytime that we hit a little bump in the road. I just haven't made a decision to have the little machine put in my body. The doctor and the Medtronics rep think that it is just a no brainer to get the pump for someone like me. I don't know why I'm not convinced IF the pump works as good as the trial and no side effects from oral medications.

                        I've never met anyone else who had an AVM. I think that we are few and far between.

                        Comment


                        • #13
                          Originally posted by itsjustme
                          I've never met anyone else who had an AVM. I think that we are few and far between.
                          Well you're not alone. My T4 paralysis was the result of a ruptured AVM 23 years ago. I'm now 47. My spasticity was much greater in the early years than it is now. Like you, I took pretty sizable doses of oral Baclofen but I don't think it ever had much of an effect and it's now been many years since I l last used it.

                          I can't explain why my spasticity has calmed down so much. I don't take any medication to treat it nor do I spend much time doing range of motion (ROM) exercises any more -- though my ROM is quite good, all things considered.

                          One surefire treatment for spasticity is penile vibratory stimulation (PVS). Its intended use is to trigger a reflex ejaculation (by stimulating the head of the penis) which enabled me to knock up my wife, but it has the secondary benefit of also, temporarily at least, knocking out leg spasticity. PVS is accomplished with the use of a high oscillating vibrator. The Ferticare is the best known example but is quite expensive. Some garden variety drug store type vibrators have been used successfully as well.

                          There is a very important CAUTION when attempting PVS -- it will trigger autonomic dysreflexia (AD). Depending on the severity of the AD, this can be a contraindication to attempting this. You absolutely must consult your SCI specialist about this before proceeding on your own. This should first be attempted in the controlled environment of a physican's office so that your blood pressure can be monitored. A severe and sustained spike in blood pressure can result in stroke in vulnerable SCIs. Needless to say, no one needs a stroke on top of an already existing SCI.

                          -----------------------------------------------------------------------------------------------------

                          Arch Phys Med Rehabil
                          Vol. 85, June 2004
                          ANTISPASTIC EFFECT OF PENILE VIBRATION IN MEN WITH SPINAL CORD LESION
                          Line Laesoe, MD; Jens Bo Nielsen; Fin Biering-Sorensen, MD; Jens Sonksen, MD
                          ABSTRACT
                          Objective: To evaluate the possible antispastic effect of penile vibratory stimulation (PVS) in men with spinal cord lesion (SCL).
                          Design: Unblinded, before-after trial.
                          Setting: Ambulatory Care.
                          Participants: Nine men with SCLs from C2 to T8 were randomly allocated into 2 groups.
                          Intervention: Twenty-four hours of electromyographic recordings from the quadriceps and tibialis anterior muscles were taken, followed by PVS or no treatment and another 24 hours of electromyographic recordings. The presence of electromyographic activity of an amplitude 4 times the baseline, with a duration of more than 5 seconds, was taken to signify a spasm. The number of spasms per hour was calculated before and after PVS and no treatment. Spasticity was evaluated by the Modified Ashworth Scale (MAS).
                          Main Outcome Measure: Reduction in spasticity and spasms.
                          Results: The electromyographic data showed a significant reduction in the frequency of leg spasms up to 3 hours (P<.05). Significantly decreased spasticity, as evaluated by MAS, was found immediately after vibration (P<.01).
                          Conclusions: PVS may be useful as an antispastic therapy.
                          Last edited by stephen212; 03-30-2007, 01:26 PM.
                          stephen@bike-on.com

                          Comment


                          • #14
                            .............
                            Last edited by Leif; 03-31-2007, 05:55 AM.

                            Comment


                            • #15
                              Originally posted by itsjustme
                              Hi Deb,

                              My paralysis is due to an AVM at T2 level. I'm 56 and I've been paralyzed 3 years now. I was so sure that I had MS. I just fit the symptom list and while waiting for an appointment for an MRI to either rule in or out the MS, I got up one morning and before the day was over I was paralyzed. Before they could diagnose it and do the necessary lamenectomy to remove the AVM the damage was done and I was paralyzed from my waist down.

                              I never had a bleed. Apparently it would swell up and affect me at times and then go back down. Thank God and Dr. Scott Shapiro (of Lance Armstrong's surgery) that I came out of my lamenectomy without suffering any or all of those consequences that they warned me about just before going under.

                              Spasms, my spasms are so bad. They interfere with everything from transfers to trying to cath. I'm like trying to cath a Venus Fly Trap. The slightest bit of stimulation sends my legs into spasms although I take about 80 mgs. of oral Baclofen a day. I have taken as much as 140 mgs. in a day but the added dosage doesn't seem to help that much. I have been offered both medical marijuana and Valium but have chosen not to go that route. Just not convinced that more pills are the answer without too many other side effects.

                              When I transfer into bed until my legs can be bent to break them, the spasms come up into my stomach and diaphram and take my breath. I can't lay flat at all. I have to sleep in a semi sitting position otherwise I just lay in waves of spasms. My feet have to be strapped to the footplate of my wheelchair all of the time because they spaz straight out, my back arches, my bottom slides forward to the edge of my chair and I would slide right out of it were I not belted in both feet and lap.

                              Last fall I did go to Indianapolis to the IU Med Center and had a Baclofen Pump trial done. I was diagnosed, on a scale of 1-10 with 10 being the worst for spasticity and rigidity, as an 8. After the injection, I have to say that it was so wonderful to go for practically an entire day just sitting normally, peacefully. I'd forgotten what that felt like. I could ride in the van without fighting to stay back in my chair everytime that we hit a little bump in the road. I just haven't made a decision to have the little machine put in my body. The doctor and the Medtronics rep think that it is just a no brainer to get the pump for someone like me. I don't know why I'm not convinced IF the pump works as good as the trial and no side effects from oral medications.

                              I've never met anyone else who had an AVM. I think that we are few and far between.
                              I'm sorry to be so long to respond. My health is on and off and so it sometimes takes me a while to get back to people. I'm sorry to hear about everything you've been through. I have had the same doubts about having a pump put in if it got to that point with me. I haven't had to consider that yet. Right now I'm still experimenting with different levels of oral medications.

                              You are right there are not many people with spinal AVM's. 90% of AVM's are in the head, but we are out there. Here is a link to an AVM web site that provides support.

                              http://www.westga.edu/~wmaples/

                              I have found it to be very helpful and I think that you will as well. Let me know how things are going.

                              Deb

                              P.S. Leif, thanks for the link. I promise I'll catch up with you soon.

                              Comment

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