My son will have embolization and surgery for a spinal AVM at Barrow next month. I know each AVM case is unique, but would like to hear your recovery experience. Thanks in advance.
Chauco99, I spent 6 weeks at Neuro rehab at Barrow. I lost motor function in both left arm and leg. I recovered motor function in left leg at 7 weeks, arm has taken almost 3 years. Can you tell me if the AVM is on the left or right side of his spinal cord? If on the left, he will lose Sensory nerves below level of injury, vica versa for the right side. Expect weakness, numbness, nerve pain and loss of control for bowel and bladder. They will put him in a wheelchair and get him to therapy very quickly. The Doctors and nurses there are top notch. You will see if they go for electric or manual wheelchair and if they feel he can walk, they will put him on a walker. I thought you had decided not to go with Barrow, but, I am glad you are. Dr. Spetzler will only do the operations that are complex and he is the best. I am walking today because of him. I will also be available for any questions, so, take your laptop with you!
I would like to add that first the surgery needs to go well. Then if any Spinal nerve roots have been stretched like some of mine were by the AVM, it will take a while to regenerate. During rehab, they will monitor him and evaluate function. Their tendency is not to say anything unless it is definite. Expect his recovery to be very progressive the first 6 months and then slow down after a year and a half. He MUST do his therapy daily in order to regain control. My advice is to get him out of the wheelchair as soon as possible. I walked with a cane for the first 6 months and after two years, passed the driving test to operate a vehicle. With determination,a positive mindset and his youth, he should do very well.
Tina, Thanks so much for sharing your experience. My son’s AVM is on the left side, affecting motor function on the left. He has regained a lot of motor function of his left leg since the bleed in September. His right leg still has numbness. Our local neurosurgeon already told us that both legs will be weak after surgery. He didn’t mention any nerve pain. I am nervous about going out of state for surgery, but knowing that Dr Spetzler has done many spinal AVM surgeries is comforting and hopeful.
Your son will have sensory loss on his right side, injury level down, but, will still have motor function.. He will lose motor function possibly on the left side like I did, but, no more than 6 weeks, it will come back and he will have sensory nerves. Legs will be cold from the knees down the first two weeks and the spine needs time to repair itself. Due to this site, I realize I have to do Pilates stretching to get rid of some of my "tightness" in my legs, he will too. I only had the nerve pain on the surface of my left leg for two weeks and it went away. I have no nerve pain at all. He may experience a tightening of muscles over his mid section, two weeks out, that is typical of what the spine does as it is healing. Do not worry about going out of state, you are going to the BEST surgeon and rehab unit. Feel free to mention Tina from Charleston SC said Hello. I absolutely love that facility and you will be in the best of hands. Wish I could be there for moral support and insight. Just keep your laptop handy and e-mail me as needed. I have studied the nerves and muscles alot. He will need the bedpan alot and I remember feeling like I was suffocating the first few days, that is your hemoglobin building it's levels back up. Also choose good healthy things to eat, they will feed him 3 times a day. If this makes you feel better, even the queen of Jordan flew there a few years back so Spetzler could operate on her. She had her own wing of the hospital!!!
I am so grateful for the reply, Tina, and your compassion. You have provided invaluable information to us, but I am sure i will have more questions. I will bring my laptop with me. It is funny about the queen of Jordan, wow!
I will say hi for you, and am grateful for your generosity. You have already given me a lot of moral support.
I am here whenever you need me. I found the Doctors and nurses don't say alot or promise alot. On my return visit, I ran into a wheelchair patient who had fallen off a ladder and crushed several veterbrae. He said I looked like a success story and I said I was! He asked me if I ever thought he would walk again? I said can you move your feet? He started moving his lower legs and feet. I told him it sure looked like the signal was getting thru. When I got home, I asked some experts about it and they said yes he should walk if he does the therapy. My point is they were not even telling him that. None of them thought I would walk again and they did not tell me that either. The truth is everyone's recovery is different and you have to want it. I feel more people could walk if they did. So, don't expect lots of promises and make sure you videotape your son trying to walk on the bars, my husband took video of me and we can see drastic improvement 3 years later. It is very encouraging.
Tina, thanks for the heads up. I guess it make sense that the nurses, MD want to be cautious of what they say. Good to know that ahead of time. I am so grateful for all your tips, please add them as you think of anything. Taking a video is a great idea.
The past month and a half has been very challenging for my son, physically and emotionally. It is just really hard for a teenager to have to deal with this. Thanks again. talk soon.
It would not be a bad idea to write down the physical problems he is going thru and taking a video now. He will be so encouraged by his progress after his surgery. For instance, before surgery, I could only walk about 25 feet w/o having to stop and sit. My attempts to get my morning paper had me driving my car to retrieve the paper which was about a 75 foot walk. 3 months after surgery, it was Thanksgiving day. My husband had to go to work early. I wanted that morning paper......so, I grabbed my cane and proceeded to walk the 75 feet to get my paper!! I walked all the way, hurray!!! I knew then how much better I was than before surgery. Moments like this were so encouraging for me. This surgery is a celebration of new life and hope. Here is what I recorded 6 months after surgery for me. "After surgery, I worsened maximally within 24 hours as my spinal cord carried motor nerve fibers to the limbs and trunk and sensory fibers from the body back to the brain. Inflammation within the spinal cord interrupted these pathways and caused the common presenting symptoms of TM which included limb weakness, sensory disturbance, bowel and bladder dysfunction, although I had NO back pain except for the area in my neck from the incision and (a very sensitive to the touch) left leg pain.
I developed weakness in my arms and legs of varying degrees of severity. Sensation was diminished below the level of spinal cord involvement and I experienced tingling or numbness in the legs and arms and diminished temperature sensation.
Bladder and bowel sphincter control were disturbed and it was about 4 months before the numbness in this area receded." If you send me your e-mail, I can send you videos of me at neuro rehab and then 3 ears later. The improvement is amazing and I am now driving a car. I can't upload the videos on this site unless I put them on you tube.
Tina, I am so touched with your recovery. What a blessing. Yes, I would like to record my son’s progress too. Since the bleed in Sep, he has recovered so much already. I think the whole AVM is still raw and at times we are still in a state of shock and disbelief. My son is anxiously awaiting the surgery hoping not to lose anything he has gained so far. It has been such a whirlwind that I don’t have anything written down so far. I am also getting ready to go to Phoenix. I need to verify the rules about flying after surgery. Thanks so much for sharing your uplifting experience.
I've been going to Barrow under Dr. Spetzler (Dr. McDougall does my angios and embos) since 2006. I have only had angios and embos as my AVM is too deep into the cord to resect, but I can tell you that I have a tremendous amount of confidence in Dr. Spetzler and his team. I always feel like I'm in the best hands I can be when I go there.
I had a mis-diagnosis of cavernous angioma for 4 years after my AVM ruptured and was told by every doctor I saw nothing could be done, but when I had my records sent to Dr. Spetzler and then went to the Barrow for my first angio and embo in 2002 that was when I finally got a correct diagnosis of spinal cord AVM and aneurysm.
There were a couple of small complications from having the embo, including developing the same symptoms on part of my right side as had been caused on the left side due to the bleed. These procedures do not come without some risk, but I truly believe the neurosurgeons at Barrow have the expertise and skills that keep them to a minimum - they have very good success rates there.
The aneurysm in my cord still has the black onyx glue from the embo; it had appeared the AVM was obliterated from the embo, but we discovered two years ago it grew back. They tried to embolize it again but were unable to. I go at least every three years for angios and embos and will be due to return next September, so we'll see if the AVM can be re-embolized then maybe.
I wish there was something more helpful I could offer other than telling you how favorably impressed I am with Dr. Spetzler and how much confidence I have in them there, but since I haven't had a resection I don't have anything to offer in that way.
To this day I still have all the deficits that came with the bleed, and they have progressed somewhat over the years, but my diagnosis and treatment didn't happen for quite a long time after the bleed, and so that has something to do with it too.
Your son will be in excellent hands with Dr. Spetzler, and I'm wishing him the very best outcome. Keep in mind that any kind of deficits that may occur with embo or resection often resolve for many patients under experienced care, and your son could easily be one of the many who don't experience any complications. Looking forward to hearing how he does!
Tori, I am grateful for your sharing, and your dose of confidence. It is very good to hear that you recommend Spetzler and McDougall. I have not met them but have learned from this website that they are experts in this field. It is good to know that they have good success rate. I understand that everyone's condition is unique, and am sorry to hear that your delayed diagnosis may have contributed to residual deficits. Since my son's bleed in September, he has recovered a lot, but still has motor and sensory deficits. This has been very difficult but I am thankful for the suggestions and sharing on this site. I have never heard of spinal AVm before my son's incident. Thanks so much for the well wishes and I will update his progress.
Hi My name is Dale, I had a Spinal AVM that ran from T3 to C3 that worsened suddenly after discovery. I was treated at St. joseph's Hospital in Tucson Az by a Great Radiological Interventionist, Dr. Rucker. He had to map the AVM first with a Heart Catheterization to see exactly where to plug the AVM. The next Heart Cath, was done to insert Onyx Glue into the AVM. A second Heart cath was required to completely close off the AVM 2 months later. Over all my complications have been minimal other than pain I have due to other injuries to my spine.
All, after over 60 days of being diagnosed with Transverse Myelitis and having multiple relapses that did not add up- I left the hospital in Chicago I was seeing and went to Mayo. Within days at Mayo Dr. Lanzino and Dr. Burrows were able to rule out TM and locate a fistula in the t3/t4 left area. This fistula, besides deregulating the pressure in my spinal cord- which caused balance, weakness, numbness and sensory issues had also bled (what I believe is twice) into the spinal cord. This blood in the spinal cord had created swelling and pressure in the lumbar area. The combination of the fistula and clots had me 95% paralyzed from the waist down (ironically I never did lose bowel or bladder). I had the surgery on 11.18 and 8 days later I was walking with a walker, 12 days later doing stairs at Marianjoy rehabilitation hospital in Wheaton, Illinois. Check out my YouTube posts and videos (originally starting with what I thought was TM- paste in browser):
Everyone is diff, but so far I am happy with my progress. I know it will still be a long road to recovery as time will tell how much of the blood dissipates from the cord- only then will I know the perm damage. For now, all I can do is give it my best every day and hope God does the rest. Feel free to contact me with any questions or thoughts. Thank you.
I had C-3 thru C-5 Spinal AVM removed in August 2010. You are much further along in recovery than I was at 8 days. You are doing fantastic, took me 2 years before I drove a car again. Recovery can take up to 5 to 10 years, but, you will do way better than that. I learned after 3 years I needed to stretch my hamstrings and side muscles, duh!! Do yoga when you get to that point. It is all uphill from here. Good thing you had the surgery, you are much improved!
Thank you so much, Dale, for sharing. It is so wonderful that you received successful treatment. Sorry for my tardy reply, my son was in surgery. He is recovering well and I am very grateful.
Wow, what a journey you had. Thanks for sharing. I am so glad that you got correctly diagnosed and was treated effectively. My son just had surgery and is having rehab and medical care. He is recovering well. Blessings to you on your recovery.