Update on my son's Spinal AVM embolization and surgery at Barrow Institute

First, I am thankful for this website. All your information and support have been crucial in my decision to take my son to Barrow neurological institute for surgery with Dr. Spetzler. I knew that dr Spetzler and McDougall are brilliant, but they are also very caring and compassionate, in their own styles. My son is really fortunate to be at Barrow. As with many spinal AVM cases, my son’s spinal AVM is complex and risky. Both the embolization and open surgery were successful. A follow-up angiogram revealed that the AVM is gone. I am very grateful to Dr Spetzler and Dr. McDougall. They are truly miracle workers. I wasn’t prepared for my son’s pain and medical state after the surgery. Dr Spetzler was very reassuring and checked on my son regularly. His team is also great, it just doesn’t get better than this. My son continues to make progress on his medical and rehab recovery. I am so glad we travelled to Barrow, I am so thankful to all of you for sharing your experiences, encouragement and prayers. Blessings to all.

This are great news! I'm so happy for you. When was the surgery and how many days later the follow up angio? Regards to you and a perfect new year in 2014!!!!

I had the same surgery, a t3/t4 laminectomy of a AVM DAVF- my procedure was done at Mayo in Rochester, MN by Dr. Lanzion and Dr. Barrows (Lanzino and Spetzler are the experts in this field and even studied together). MY fistula bleed in my spinal cord several times causing a heap of damage to my lower body. I have been in therapy for over a month now and although I am making progress, I am still a long way from getting anywhere close to where I was. I'd like to talk to you and learn more about the similarities of our scenarios. Let me know if we can compare notes. Thank you and good luck.

Wow your story sounds amazing, I hope your son continues to make good recovery after the operation. I have an AVM at T 6/ T7., I had a bleed last Aug '13, had one unsuccessful embolisation, open surgery in Dec, which has reduced blood flow and made it smaller, but it is still there. I’m now deciding if to have another attempt at embolisation. It’s all very scary and frustrating. Good to hear other peoples stories

Thank you Michael, sorry for the late reply, shortly after I posted, I was informed that my son will be discharged very soon. I was getting ready to leave the hospital and then overwhelmed after my son's discharge. The angio was done right after the surgery. I was informed that they (Barrow) routinely do a follow-up angio the day of surgery or the following day.

Thanks, chicago_george, my son's AVm was lower (T10). I learned that AVM in the spinal cord has the highest chance of bleeding. Afte my son's initial bleed (before surgery), he had PT immediately and was having progress continuously (> 2 months). I think each case is unique and complex. Best wishes to you on your recovery. The spinal cord is capable of a lot of reorganization and recovery, but it does take time and therapy.

Thanks for your kind words. It was very scary for me (as a mother). I am so thankful that my sister told me about this website. It has truly been a life save for my son, I wouldn't have gone out of state for my son's neurosurgery if it hadn't been for this site. It has truly made a difference in my son's (and my) life. I wish you the best in your journey of recovery.

My sons scsn is showing this on the dural surface does it look familiar?
193-image.jpg (220 KB)

In addition to a MRI, my son also had an angiogram done. They needed to do an angiogram to have a clearer picture of the AVM, and to localize the AVM and the aneurysm. I don't know much about AVM Vs AVF, but I remember I was told that if the abnormality was an AVF or if it was extradural (outside the dura), it would have been easier to treat. In my son's case , it was an AVM and inside the dura, so it was more complex and had to be resected surgically. It is very hard for parents, I have been there. Best wishes to you and praying for a full recovery for your son. Children and young acults have tremendous ability to heal.

Update on my 9 year old: Our MRI and MRA with sedation went well yesterday. The neurosurgeon here in Miami is now in agreement. He sees the area and is suggesting angiogram. He thinks spinal avm type 1 but can’t be sure until the angiogram. He says he would feel comfortable doing the surgery unless it was another type. Well now the decision making comes in. Spetzlers office was like just get your angio wherever. We are not thinking that is a good idea. Told them that also. Is it true the angio is pretty risky? Could damage the cord also? And shouldn’t the institution doing the actual surgery do the angio? We have to pick someone and being in south Florida we know we don’t have many options. Also, we think no rupture yet and as of now back pain, leg pain and weakness along with some headaches and arm pain. So will the surgery make all of this go away? I know Dr. Spetzler is 70 I think. He is still doing these surgeries? And is still the best? How is the hospital there? Are the rooms private? Please please if anyone could help with all of these questions as I am a scared mom having to make a lot if decisions

Cant comment on spetzler, can tell you about Mayo in MN. I saw doctor Lanzino and Dr. Burrows my angiogram was done by Dr. Kaufmann - the truth is, id do my angiogram at the place id be getting the surgery. I had 2 prior angigrams at other places and they didnt find my bleeding fistula- Mayo did. because they also did the surgery, they took the right pictures of the fistula during the angio…basically getting everything thry need for what is step 2, placing the golden pin. AFTER the angigram and before surgery they will likely place a golden pin in the spine that will act as a refrence point for the doctors at the time of surgery. This is realtivly painless, but it is exactly what im telling you- a pin made of gold driven into the bone of your spine marking the exact location of the AVM. Think of it as a landmark during surgery to avoid mistakes. Now, the placement of this pin ties very closely to the angio pictures. That said, pictures from local hospital may not provide all info needed for whatever facility does the surgery (so again, try to one stop shop this for the sake of continuity). Mayo had private rooms, very clean and in fact their spinal unit was just remodeld recently. Had all the cable channles even NFL redzone and great ONDEMAND movies. The food was open menu order what you want when you want(during kitchen hours) and room service brings it up. it was good food- better than youd expect for a hospital. Now you may be thinking, “who cares about the tv or food- im worried about my son”…understandable- but these little things help improve the experience and at the end of the day these will be the diffrence makers through a difficult time. Then there is the nursing staff- im from chicago and never spent any time in MN. however, after my 2 weeks at may i am convinced MN folks are some of the nicest and best people around. It goes beyond their “training”- i can sniff out the fake sympathy BS; these people really cared and were genuine in their conversation, assistance, guidance and help. Not one bad apple in the bunch i had maybe 30+ interactions. Even the folks transporting me from here to there were really nice. IT MADE A HUGE DIFF. Especially having spent two prior month in other facilities.

All that said, make sure 1. You know the track record of the surgeon percorming the work. You dont want some guy thats “learning his way through it”. Ask how many of these they have done, ask for the stories on each and prognosis- possibly even talk to some of these folks. 2- try to get everything done where you plan on having the surgery, those folks will be more inclined to “begin with the emd in mind” and do everything you may need. 3- dont overlook the little things, in the end, they will matter. Anything that improves “the experience” is a good thing.

You can call me id be more than happy to answer any other questions. 312.672.1266/george

I traveled to Barrows from Ky and so glad I did. My story is a long one, but after having angiogram here at home that came back clear my dr thought it was a malignant tumor. Dr.theodore who is amazing started surgery, got into spinal cord, and saw it was AVM. By the grace of God Dr.Spetzler was in the building and was able to do surgery. Dr.McDougal did angiogram next day and it was clear. I owe my life to them, because I was almost paralyzed. They were compassionate and Dr.Theodore calls and checks on me regularly. I am making progress, but still have a long way to go. So thankful for the dr’ sat Barrows.

I am soglad you went to Barrow too! I am now 4 years out and continue to amaze many with my recovery.

Barrow is where I go (travel) for my angios and embos, too, and I think they're awesome there. Drs. Spetzler and McDougall are also my docs there.

I'm so glad for your son and for you that they were able to offer a treatment option for him, and mostly that it was successful. I hope your son will continue to recover well.

My spinal AVM and aneurysm are intramedullary (inside the cord), at the C-7 to T-3 levels.

Bestest,

Tori

Thank you Tori. I can tell you that I probably wouldn't have gone to Barrow if it wasn't for the wealth of information offered on this website. I am so grateful to each of you, who shared with me your experiences, recommendations, which gave me the courage to "travel" with my son to get the surgery. Thank you!! Best wishes to you too.

Can you update us on your son's recovery? i.e. has he recovered motor function, but, suffered sensory nerve loss like most of us? I am trying to recover from a left leg limp myself. I lost the use of my left arm and hand, but, a nerve conduction test proved the nerves regenerated after 3 years. Massage therapy has helped me regain movement of the arm and some clasping ability of the hand. Ilove Dr. Spetzler, he is the best!

Hi Tina, great to hear from you, sorry for the delay, life has been very hectic! My son continues to recover, he walks independently without crutches/cane and without any noticeable limp. In general, his left leg is still weaker than the right. (The left leg was the paralyzed one before surgery.). He has problems walking on his heel, or standing on 1 leg. He still has spasm on his left leg, especially when he is tired. His achilles and hamstring are tight. Last year about April/May, he did have a skin infection of his right toe requiring antibiotics. The pain sensation of the right leg is still off, he said that the right leg is less numb than before. So there is some progress in the sensory recovery too, but he needs to inspect his right foot for injury. He is using an electrical stimulator to increase ankle muscle strength (which helped). He is receiving acupuncture and just started cranial sacral therapy (2 sessions). He has not received any massage therapy, but that sounds like a good idea. He is not doing the exercises that he is supposed to but playing too much video games instead!!Oh, he also walks on the treadmill 2-3x a week (should really be daily). Anyhow, that's it for now.Talk soon, and take care.