Hi everyone, I am new to the group. I was diagnosed with Spinal Dural Arteriovenous Fistula (SDAVF) at my C1 (Foix-Alajouanine syndrome) in the Fall of 2016. My symptoms started much different than some I have seen here. In the Spring of 2016, I noticed a cold, patchy feeling in my left thigh (sensation loss). The cold, patchy sensation started to show up in different areas of both legs. By mid-summer, my feet felt cold all the time, but were not cold to touch. I started having difficulty walking and incontinence. I went to my Neurologist who ordered a lot of test to rule out MS, ALS, NOS, etc. My neurologist started me on IV steroid treatment, thinking it may be MS. Immediately after the first treatment, I had to use a walker and have assistance getting around. Everything immediately went down hill and he thought it maybe Guillain-Barré syndrome and I was admitted to the hospital for possible plasmapheresis. However the MRI showed something that he felt like a Neurosurgeon need to be consulted for further evaluation. They suspected DAVF and ordered a MRA. Embolization was done but could not stop all the feeders, I then had cervical laminectomy. I had some improvement, but this spring had to have a repeat surgery to correct a vascular clip that had shifted on the feeder. I am current 5 weeks out from the last surgery. I have seen, once again some improvement, but I am still struggling with leg stiffness, it is very difficult to climb steps. However, I am able to walk without assistance. Spasms in my legs are managed with medication. I still have a lot of hyper-reflexes and loss of sensation from my pelvis down. I am still struggling with double vision, but I hope that can be corrected or improved.
Susan,
Hi. I was just checking back on the New Members area and I’m sorry to see nobody has come to talk to you. I am not clear if your DAVF is cranial or spinal or a bit of both but clearly you have quite specific symptoms that align in my understanding best with the Spinal group.
I’ve added you to the @Spinal group in the hope that members there can help you better.
Very sorry for not getting you better in contact earlier. Do let us know how you are now.
Very best wishes,
Richard
Hi Susan
I read your post and I do see some similar symptoms and like you MS was on my GP mind. Good to hear that you are seeing improvement after your treatment. I am having no treatment just now but hoping science progressing will give more opportunity of treatment. Xx😊
Hi Susan, I too have a spinal avm and my docs were thinking it might be MS also, that is why I got the MRI too. Mine is in my lower back. I’m glad you are able to walk after surgeries.
I also have difficulty with stairs if I over-exert myself the day before. It feels like I ran a marathon and my muscles are all sore and/or tight and hard but in reality I only walked 10,000 steps the day before according to my fit bit. I noticed in early spring parts of my thigh and buttocks were ice cold to touch when I was walking or showering I would feel it with my hand. Is that what you are describing?
Today I feel like someone kicked me in my spine really hard.
Hi Susan,
My laminectomy was performed at T10 nearly 2 years ago in Cot 2015. My symptoms are similar to yours. Noticed when the winter comes that I have more leg stiffness. We are now in the southern hemisphere winter and this time the weather is colder compared to last year. My legs stiffness getting worst and since 3 weeks the neurologist started me gradually on Beclofen. The spasm is getting better, but my legs feels weaker. Which medication are you using for the spasms in your legs? You can look-up at my profile if you are interested on the full story of my DAVF issues. Hope your double vision will get better soon.
Kind regards, Franz
Good Morning Gina, I am just checking in with you. How are you feeling today? I say prayers for you and hope that you are doing well.
Hi Joanne,
I have been feeling pretty good. I figured out how to adjust. If my back hurts badly I’ll lay down until it goes away or if I have pins and needles that are mild I ignore them… I sort of stopped my hour s day walks and notice that greatly improved a lot of my problems. How about you? I am thinking about you too and wondering how you are also.
Hi Gina,
I’m very glad to hear that you are feeling better. Im not your doctor, but i think it’s a good idea for you to rest as much as possible! haha
I continue to improve a little at a time. I noticed the last couple of days that my second, third, and fourth toes on my right foot are gripping the floor where they were not before; my big toe and pinky toe are coming along, but not as much. Some days, like last night, I have pins and needles really bad so that I can’t sleep but I eventually fell asleep and when I woke up I felt much better. I go to PT 2 days a week for 3 hours each and that is helping a lot. I always feel better when I leave there.
I don’t know if you can see it very well, but my profile picture is a side by side of my before and after angiograms.
Wishing you all the best,
Joanne
Hi Franz,
I am also using baclofen for spasms and stiffness. I am gradually increasing my dosage. It helps with the spasms, but I still have a lot of tightness in my butt and right leg. I take gabapentin for nerve pain. Do you take anything for nerve pain? I hope to someday be free of medications.
Hi Joanne,
I started Baclofen in June with a low dose and gradually increasing it. Since 2 weeks ago taking 4x a day 10 mg tablets till I see the specialist again this coming Friday. For the nerve pain I am taking Lyrica. The bed sheet in hospital feels like sand paper. Starting with 1 tablet at night one week after the laminectomy in Oct 2015 than increased after 2 weeks to 2 tablets at night. No more problem with the bed sheet. In March 2016 tried to go back to one tablet, but it get worst after 3 weeks. than back at 2 tablets again till June 2017. Since taking Baclofen I tried to reduce the Lyrica back to one tablet at night and is OK till now. After discussion with the specialist I might try to stop Lyrica … and see a few weeks later what’s happens. The reaction only happens ca 3 weeks after changing the dose. Like you also I hope to be free from regular medication.
Hi to all on this string. I have a question related to leg stiffness. I am 6 months post laminectoy for AVM at T12 thru L3. My stiffness is more in the hips than lower legs. When I get up from sitting for a while, I feel like an old steam locomotive where I have to push one hip forward and then the other hip forward until I can get into a stride. Does anyone else have this experience? Thanks Chris
Hi Chris, Sorry only responding now. Got issues to access my emails. Only read the notification today and logon to AVM website. Since June 2017 I got legstiffness caused by muscle spasm on both legs from hip till lower legs. That’s the reason for taking Baclofen I described above. My laminectomy was at T10 in Oct 2015. Prior to June 2017 I did not have the spasm, but more issues controlling my balance and leg weakness. Since the spasm kicked in ij June 2017 my balance is good and legs are no longer weak. I have been told that the spasm is part of the healing process and might last for me till approx March 2019.
Exactly, they told me the same. Had massive spasm and clonus from 2013 - 2015. Then it became better and better. Now spontan spasm and/or clonus when rest in bed or couch. But not everyday. They told me (Dr and PT) the nerve are re-organisation itsself, and spasm is the visible result of their work. best wishes !
Hallo Michael,
Your experiences of similar spasm and clonus between 2013 - 2015 are similar like what I currently have since June 2017. Hope it will get better as the nerve rehab specialist told me from March 2019. My laminectomy was also done similar to yours at T10. Your story encaourage me and give me a positive thinking of gettting better next year 
I often visited Muenchen and Augsburg is not far. Might be one day we could meet for a beer. I studied and work 12 years in Deutschland between 1972 - 1982 and after living in Melbourne travel frequently to Muenchen/Erlangen.
You are welcome ! Yes we drink this beer !
(English translation is at the end of the German text.)
Hallo Michael!
Während dein massiven Spasmus zwischen 2013 - 2015, welches Medikament wurdest dir von deinem Neurologen verschrieben? Zurzeit, um meinen Spasmus, den ich seit Juni 2017 habe, wurde ich 10 mg Baclofen Tabletten verschrieben. Ich nehme 5-mal am Tag: 15 mg, 15 mg, 15 mg, 15 mg, 10 mg. Auch Dantrium Kapseln 2-mal am Tag: morgens 25 mg, abends 25 mg. Meinem Neurologen sagte, dass gegen März 2019 mein Krampf aufhören sollte. Könnte sein, dass ich eine ähnliche Episode durchlaufe wie Du in den Jahren 2013 – 2015?
Schöne Grüße aus Melbourne,
Franz
Hi Michael!
While you had your massive spasm during 2013 – 2015 what medicine was prescribed to you by your Neurologist? Currently to ease my spasm that had since June 2017, I have been prescribed 10 mg Baclofen tablets to take 5 times a day: 15 mg, 15 mg, 15 mg, 15 mg, 10 mg. Also Dantrium capsules 2 times a day: morning 25 mg, evening 25 mg. They told me that around March 2019 my spasm should stop. Might be I am going through a similar episode as what you were in during 2013 – 2015.
Greetings from Melbourne,
Franz
(Sorry for other AVM readers that I wrote to Michael in German language. He mentioned that he has difficulties to read/write in English.)