Hi! I'm very new to this post and very scared as I've just been diagnosed with a SPINAL AVM. The doctor recommended Radiology, but said there was also a chance I could have a STROKE!!! I usually treat any ailments, including ovarian cancer, which I had 10 years ago with Herbal Medicine. One reason I opted out of Western Medicine for my cancer was that the treatment involved radiation therapy! I've been looking online for an herbal or holistic (or maybe even acupuncture)approach, but I can't seem to find any information. Does anyone know of anything? I am the only caretaker of my mother and I'm scared of what would happen if the treatment went wrong. On the other hand the doctor said IF I DON'T DO ANYTHING, I could also risk a stroke or paralysis! My immune system is very messed up, since getting a cortisone-steroid injection last year for a simple case of TMJ. I had such a severe reaction to the injection, I almost died and was in the hospital FOR A WEEK. Since then my Immune System seems to have turned on me and I've developed allergies to many medications, (contrast iodine, the gadolinium they used in the MRI to diagnose me, and even eye drops the doctor put in to my eyes to dilate them! (That landed me in Urgent Care.) That's why I'm petrified of the idea of this surgery, yet my back and legs are hurting severely. Is burning pain in the legs a symptom of Spinal AV Malformation? (I'm sorry to go on like this but I'm so Stressed-Out, especially on account of being the only person to take care of my Mom. I'd appreciate ANY AND ALL HELP OR SUGGESTIONS. Thank you very much. Sincerely, Denise
Hi, Concerned, yes, the burning pain in your legs could be connected to your spinal AVM. Which doctor are you seeing? If an angiogram has been suggested, you should follow your doctor's recommendation on that -- it is the best way to map out the vessels and see what is going on. There is some radiation exposure, but it is important nevertheless. Having an angiogram is a better option than doing nothing for a spinal avm. As far as the stroke risk, I do not know anyone here who has had a problem like that from an angiogram.
When it comes to treatment, you should seek several opinions and proceed with the doctor you are most comfortable with. It is scary having a spinal AVM, but you can't let fear guide your decisions on this.
Hi dancermom, Thanks for writing me so quickly! Have you had the angiogram? Even my doctor said there's a one in a hundred chance of STROKE when you get one. Then I just read an article tonight online about a woman (mom of 2) who got an angiogram for a pretty minor problem. She was getting migraines. She experienced a MAJOR STROKE and is now paralyzed and totally unable to care for her children or do anything. Her whole life has been destroyed. In fact, she was even awarded 22 Million Dollars! So I'm really terrified. Two doctors have told me to take the conservative approach and just do nothing for now, and 2 doctors (both surgeons) have told me to do it, but they scared me SO MUCH!!! I am the ONLY PERSON my Mom has to care for her so if I'm out of commission, I can't help her at all. I was hoping someone could tell me of some herbal or holistic treatment for this. Anyway, I'd love to know if you had the procedure, what your experience was, if it got rid of the AV COMPLETELY, and how long you had to be in the hospital. I hope you don't mind me asking you all these questions, but I'm truly so stressed out about this! Thank you so much again, Denise
Hi, Denise, 1 in 100 sounds inaccurate to me; I have never heard that figure before, and we would be hearing a lot more stories about this on the website if it were true. My son had an angiogram; I don't have an AVM myself. There are also internet stories about people getting hit by lightning or having car crashes, but we still go outside and drive cars, right? Life has risks, and so do surgeries, but if we choose our doctors wisely, we have a great chance of getting through an angiogram without incident.
I think you should ask some of the members in the Spinal AVF group whether they would advise you to "wait and see." I believe most of them would advise you to get treatment if possible, because once there is spinal cord damage from the AVM, it won't regenerate. I recommend you send your scans to Spetzler at Barrow in AZ and get his opinion. He is one of the best in the country for spinal AVMs and will not steer you wrong. This is a tough situation, but you have choices, and you still have some control over the situation. Sometimes it takes awhile for your path to become clear, but you will find your way.
Dear dancermom, Thanks so much. Your advice is making me feel a little better. I've been feeling like a ticking time bomb, afraid to move to much. I used to get chiropractic adjustments when I occasionally had back pain, but I'm terrified at the thought of it. How is your son doing now? Is he OK? I hope so. How old was he when he had it? Did he have to stay in the hospital long? Did Dr. Spetzler do his angiogram? Would he be willing to look at mine if I'm not having it done with him? I don't know if he'd charge me for that or if my insurance would cover it. I'm on a very small income. Oh, by the way, did your son start having spinal pain and leg pain suddenly? I'm also getting occasional pain all the way around my ribs. How do I contact the Spinal AVF Group you mentioned? This whole thing is so new, frightening and confusing to me! Thank you again so much for taking the time to reach out to me. I truly hope your son is totally healthy now! If I think of anything else I'll write and if you think of anything else you write me too, OK? Thanks again. Sincerely, Denise
Hi, Denise, my son had a facial AVM, but I follow the stories of all the members here, especially those with peripheral (non-brain) AVMs. The spinal AVF group is here: http://www.avmsurvivors.org/group/spinalavf
You can also run a search on Spetzler: http://www.avmsurvivors.org/main/search/search?q=spetzler
I think he charges $100 for a consult?
I was terrified last year when I joined; now, my son has been AVM free since last March. Success stories do happen!
Denise,
First, welcome to the group. You've come to a great place for support and information.
Dancermom is right (as always). Join the spinal AVF group. Those survivors can help you so much.
As for the angiogram you need to have it done. It is the only way for the surgeons to know exactly where your AVM is located and what veins and arteries are involved. They can't treat you correctly if they don't know.
I've had several angiograms. I wish I could tell you what it was llike but I was in a coma for mine so I don't remember. I had a bleed before I even knew I had an AVM. I will tell you what I know.
Angriograms will not treat the AVM. It is simply the best way for surgeons to map out exactly what is involved with your AVM. Basically the doctors will go in through the groin and from there up to your AVM is located. You'll have to lie flat for a few hours after the procedure to make sure the groin incision closes properly.
There is a risk associated with anything, no question. Just make sure you have a qualified team of doctors and you are as comfortable with them as you can be.
Dear Trish, Thank you so much for writing me. I was rather alarmed to find out you were in a coma! Was that caused by the ANGIOGRAM or the AVM? I truly hope you're totally healthy now!!! How did they finally treat you? I know there are several ways. Did you have a lot of pain after? Do you have pain now? How long do you have to stay in the hospital (for the procedure that fixes it)? As you can see, I'm pretty stressed out about this. Thank you for your help again. Sincerely, Denise
Dear Damcermom, Thanks again for all your help and support. I'm SO GLAD YOUR SON IS OK NOW!!! Do you know what the rate of success is for Spinal AVM"s? I'm trying hard to stay calm. Thank you again so much! Sincerely, Denise
A "success rate" would not be meaningful, I'm afraid, because AVMs vary from very small to very large and relatively simple to relatively complex. They have different stages of development, too, and involve different tissues. The best input you can get about your chances of success is from the doctors, about your own, individual AVM. The stories here are all unique and will not predict your own experience. Just ask your doctors: "If this was your MRI (CTA/angiogram), would you have this surgery? Why? or Why not?"
Hi,
My daughter has a large AVM in her spine between S1 and L4. Her AVM became symptomatic and she had a bleed that went misdiagnosed. She recovered from the bleed and 7 months later she had burning, shock like pain in her legs and she was unable to urinate. Her AVM was embolized and she has had 3 angiograms. I would highly recommend an agiogram with the option to embolize on the spot. As a result of her late diagnosis the bladder damage and damage to her bowels is also permanent. I am a pediatric nurse and as a nurse I can tell you that there is no herbal or natural remedie to a malformation of this type. This an issue that is going to need western medical intervention if you are to have a positive outcome. Please seek help from a Neurosugeron and an interventional radiologist. If you need recommendations just ask any of us! Best of luck.
I have one, possibly two spinal avm's. I was supposed to have an mri with dye a month ago to see how bad they are. I'm currently undergoing recovery for my brain avm. Sooooo...with this surgery, I had horrible results and ended up with epilepsy. I'm afraid to get the spinal avm's checked, since it was the pain from these that led us to the brain avm. :(
Hi Denise,
I also have a spinal avm. Mine is at T4 which has not been treated. The angiogram helps with the diagnosis, knowing what vessels are affected, where the feeder vessels are etc. It gives a detailed picture of your avm that an MRI is unable to do. In your case with the pain etc, they will need to know what is happening. Yes there are risks, but there are risks with any procedure. We take risks when we get in our car and drive somewhere.Sometimes it helps me to look at it that way. After the angiogram they will be able to tell what the best treatment option is... whether it be embolization, cyberknife, surgery, etc. Depending on your situation, treatment could keep you from being paralyzed.
In my case since I am still walking and not experiencing pain... the recommendation is to leave my avm alone due to its location. The risk of my coming out of treatment with paralysis isn't worth it at this point. That could change at anytime. I have learned to live with this. Some days are easier than others. I had to learn not to let worrying control my life.(ALTHOUGH EASIER SAID THAN DONE SOME DAYS!(You are NOT ALONE!) My husband said it best when he said that he could be in a car accident tomorrow and be the one in the wheel chair, not me. He's right.
Your situation sounds like you definitely need to be seen and I agree with Dancermom that Dr. Spetzler would be the one to connect with. My doctors have consulted with him on my case.
I go to Mayo Clinic in Rochester, MN and love my neurologist and neurosurgeon there.
I can understand you fears regarding the angiogram and everything associated with your diagnosis!! I have had one to help with my diagnosis back in 1998. I remember how scary it was when I was first diagnosed. Meeting with doctors who specialize in this... they will be able to help you work through your concerns regarding your allergies etc and decide what is the best route to take. Keeping in touch with others for support on this site will help immensely too. When I was diagnosed it took me hours of searching online to finally find one person who had a spinal avm like me, and even hers isn't exactly like mine.
Please know you are not alone. It is a scary time and worrying about taking care of your mom is also a stressful situation to be in. Do you have a support network of friends/ neighbors, church family etc that can help? I will definitely keep you in my thoughts and prayers.
I pray this helps. Remember you are not alone. Don't ignore your symptoms. The burning sensation has always been a warning sign for me. Mine occurs in my chest and or back. My first bleed felt like a torch had been turned on on my right side shooting up from my feet to my chest and knocked me to the ground. Since then I have had four other episodes but not nearly as bad.
Get several opinions like dancermom suggested. Being from the Midwest, I really like Mayo Clinic. and as I said, they consult with other doctors as well like Dr. Spetzler in Arizona.