Hi I am a new member and I am so glad I found this AVM Support Group. I was diagnosed in 2017 and had a lot of the symptoms everyone is talking about. I was told by two different neurologist and neurosurgeon that a spinal fistula could be hereditary. To keep this short I still have bladder problems, spasticity in my feet and the nerve pain is on going.
Recently I have had a Spinal Cord Stimulator implanted to help control leg nerve pain and also an Interim Bladder implant to help with my bladder control issues. Has anyone ever had two implants because I am having issues with both causing to much stimulations and I don’t know what to do. Since the bladder implant it is causing more nerve pain and I think the two implants are fighting against each other. Any comments would help.
Welcome @flowerpower1915 it’s great you found us (but always disappointing you had cause to do so)!
You’ve found the right place first time, too. I added you to the Spinal group when I admitted you and I hope one or two of the guys might be able to share some common experience with you. Posting in this particular category on the site does just drop a notification to people in the Spinal team that someone has posted.
I don’t have a spinal fistula myself – mine was in the middle of the back of my head – so I can’t relate to your particular troubles as the location of an AVM is key to the symptoms we have. I would, however, love it if you could expand on the bladder implant – what does it do? What does it solve for you (or try to solve)?
Welcome!
Richard
Hi flowerpower1915,
I was diagnosed in September 2015 with a spinal Dural AV Fistula at T10 and I lost feeling of my legs, bladder and bowel issues. After laminectomy in Oct 2015 gradually everything got better and I was able to walk again. In 2017 the spasm kicked in from knee down on both legs. The neurologist prescribed me with Baclofen tablets that helps to easy the spasm. Because oral Baclofen was causing other side effect an ITB (Intrathecal baclofen) pump was inserted in my abdomen supplying liquid baclofen to my spinal cord with a lot lower dose. With oral Baclofen I have to take 80 milligram/day and using the ITB pump only 450 microgramm/day. I have less spasm and can walk 2 Km in one go and after a short rest another 2 Km walk using a walker outside my home. My balance is not that good and the walker helps me to avoid any fall.
Cheers,
Franz
(Melbourne - Australia).