I have spinal vascular malformation. I am now 22 years but first developed symptoms in 2013. I first developed a sudden neck pain and stiffness. This was sufficiently severe for him to present to hospital and describes what may be opisthotonic posturing at the time as well as severed headache.
I underwent cranial imaging but did not have any imaging of the spine at this stage. The diagnosis remained uncertain at that point. The pain settled after one month but another very similar episode occurred almost exactly one year later without finding the problems causing the stiff neck.
I developed urinary retention about that time and later began to notice I also notice bladder inconsistency and weak erections. began to notice his right leg dragging such that he could no longer walk quickly or run. Between 2016 and 2017 his gait continued to deteriorate and he had recurrent episodes of similar headaches and neck pain.
Between 2016 and 2017 I began to notice my right leg dragging such that he could no longer walk quickly or run his gait continued to deteriorate and he had recurrent episodes of similar headaches and neck pain. I was referred for treatment in India and underwent an embolisation of this spinal vascular malformation under Professor at the Artemis Hospital in New Delhi. It was recommended that I undergo a follow-up angiogram after a 6-month interval but was unable to get in contact with the treating team and as a result, never had this imaging and has continued have episodes of neck stiffness since that time although neurologically I remained functionally.
Between 2021 and early 2022 I met a new team of doctors, had a spinal angiogram scan and had surgery which after the surgery I repeated the spinal angiogram. I’ll leave the findings so you can see them.
Before: Type III Extradural-Intradural Complex spinal arteriovenous malformation. The intradural component is predominantly supplied by the right T8 intercostal artery which is significantly hypertrophied. The extra dural component is supplied by multiple arteries including the right and left T6 intercostal arteries, right and left T7 intercostal arteries, Left T8 intercostal artery and right and left T9 intercostal arteries.
After Surgery: Interval surgical intervention with decompression of the intra-dural component of the arteriovenous malformation which was supplied by the right T8 intercostal artery. Interestingly, there has been interval development of increase vascularity from the left T11 intercostal artery which has a branch extending superiorly to supply the extra dural component of the arteriovenous malformation. The clinical significance of this is unknown. All other vessels are not significantly changed.
They cleared the malformations and now I am having physiotherapy sessions, So far I’m seeing a little improvement and hoping with time I will get better. I’d like to know if there are people with similar symptoms like mine which includes urinary inconsistency, spams, spasticity at my right leg, erectile dysfunction and difficulty moving and lifting my right leg. Are there any solutions to these symptoms you’d like to share
Also I’ve read peoples stories and I’ve noticed people saying this formations come back in the future, how true is that
Welcome, and it sounds like you have had lengthy challenges with your AVM. I am a brain AVM guy so will defer to others to talk about the experiences they have had. We do have a spinal specific group, and that may be a good space for you to seek others experience. I have included a link to that group:
There are definitely a bunch of others in the @Spinal group. I added you to this group when you joined. These are the guys that you’ll have common ground with and I’m sure some will share their experience. You are not at all alone.
It seems that it varies from each situation. I had a similar situation, but both legs were affected and my bladder. I have not had much improvement for 5 years, but have not gotten any worse. I exercise and keep my legs working. I do see occasional progress, but it is a slow process. I still cath daily and it’s ok. I keep my spirits up and work daily to get better.
Hi Survivor77,
I am Franz living in Melbourne, Australia. I had similar symptoms like you: weakness, numbness, pin & needles on both legs starting late 2014. Initial diagnostic I got my knees scanned and later my lumbar spine. Nothing was found and the doctor said because I am getting old (63 Y). At this time, I can still walk 3 Km. Before the problem started, I walk/hiking around 20 Km in a day with no problems. There after I also have bladder control issues and lost feelings from waist down and balance problem. After a whole spine MRI, the neurologist diagnosed SDAVF at T10 end September 2015. My spine cord was inflamed between T2 and T12.
They performed an endovascular embolization in October 2015, but they were not able to access the point that need to be fixed. 3 days later they performed a laminectomy at T10 to fix the SDAVF. After 3 weeks rehab, I was able to walk normal and the balance kept improving. Early 2016 I was able to walk almost normal and I can feel again from waist down. Unfortunately, in 2017 I start to get spasm and balance problem. An MRI doesn’t show re-occurrence of the SDAVF, but they discover that the spine cord has shrunk slightly between T2 and T12. I was treated with oral Baclofen tablets to control the spasm. As the Baclofen dose needs to be increased and causing other issues the specialist suggested for an ITB pump implant in 2019. After a few Intrathecal Baclofen test the ITB pump was implanted in February 2020. I still have spasm, but is stable. Survivor77, we have some similar symptoms, but each person is different after embolization or laminectomy. Your case might be different than my case. The specialist treating me also explained to me that every person is different after a SDAVF issue.
Vitamin K complex (K1 K2 M4 M7) easily found on Amazon has done more for me than 25 other things I tried for my similar spinal AVM. I tried herbs, mushrooms (Reishi, Chaga etc.) other things with acronyms and names like alpha-this or that. Even very expensive mesenchymal stem cell therapy. Vit K has done more than all of those put together.
I have Foix-Alajouanine Syndrome, an AVM you can look up. I’m 70 years old, now 8 years with the AVM, and still walking, but it’s hard.
I’ve been to 6 neurologists, three of them at University of California med center. Not one has ever mentioned vitamin K complex.
I posted on avmsurvivors a scientific review article on vitamin K and the neuro system. If you can’t find, message me or reply here. I don’t have time to find it.
Previously I am taking Baclofen tablets 6x/day totalling to 80 mg a day. The side effects that I have are: low blood pressure, constipation. the need to urinate more often and excessive sweating when sleeping at night. I am using the ITB pump since 3 years and currently delivering 460 micro grams of Baclofen a day into the spinal cord. That is less than 0.5 mg Baclofen/day compared to the 80 mg Baclofen tablets/day. Since using the ITB pump all the side effects I mentioned earlier disappeared.
Thank you for mentioning the Vitamin K complex. I already found and read your posting from Aug 2022. I am also 70 years old and living with Spinal AVM since 2015. I am walking with a walking stick or a walker for longer distances. With a walker I can walk 2 Km without a break.