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.
That's terrific, Momspinalavm! Thanks for updating us.
Thank you, dancermom, for suggesting dr Spetzler. It saved my son.
I am so happy to hear that he recovering. My daughter also has a spinal AVM that has been embolized. We are here if you need help or encouragement.
Thank you, Margo, for your support. I really appreciate it. Best wishes to your daughter too.
Great news, that is where we travelled, twice, to have my son's brain AVM removed. Dr. Spetzler and his team are truly amazing. How lucky to have such talent in the USA.
My daughter is still in ICU today the 14 jan.
After series of seizure attacks for a few days. He last seizure was actually on the 5th January. Ever since that nothing has been clinically observed as seizure.
She did EEG test and it was cleared no seizure symptoms detected.
MRI done, no new development in the brain, all cleared.
Lumbar puncture, cleared no bacteria or infection found. CSF 15. Which doctor’s commented 10 would be ideal. So 15 is slightly high but not threatening.
She was extubated on the 10 Jan. No more breathing through the ventilator. However, hey found bacteria on her phlegm. Doctor indicated bronchitis or mild pneumonia. Now she is being monitored very closely in ICU on her breathing problem. As she has been intubated (breath throught ventilator, for exactly 20 days.
She can open her eyes, she can hear things, she moves her limbs but she doesn’t have any eye contact with me at all. I tried to out my hands on her eyes she doesn’t react at all. I just want to know how long does it take usually for a child to be gainfully conscious. I am so worried that she could recognize me at all.
Is it normal for her to have such a eye contact ?
I am really worried.
Does anyone know if it would be possible for me to email Dr.Spetzler ?
Does anyone have his email address ?
I would like to share with him about my daughter’s case.
We live far away from the States, thus it would be impossible to visit him.
Does anyone know about rehab and therapy after AVM surgery ? Any tips here would be very helpful
A second opinion can be obtained at Barrow by using the form at this link: https://www.thebarrow.org/Neurological_Services/2nd_Opinion_Program/index.htm
I phoned the office which can be found on the website. Best wishes to you and your daughter
Janice, I can't agree with you more! Thank you so much for sharing your experience with me, it was really helpful to me.
Hi,
From one Spinal AVM mother to another, I am so happy to hear that your son's Spinal AVM has been successfully treated. My daughter had a very long journey...that continues with her spinal AVM. Hers was also embolized twice and obliterated, however, no surgery to remove it (to dangerous). She still had some deficits as a result of of it, but she is learning to live with them. She went through a period when she could not walk, but with lots of physical therapy and hard work she is able to walk again. We were able to travel to San Francisco last May and walk in the TAAF 5k, which was a huge mile stone for us.
This forum has been an amazing source of support for us and I am glad you found it!
Margarita
Thank you, Margo. It has been the most challenging and scary thing I went through. My son is still recovering from the surgery. His recovery is considered very fast, due to his youth (17). I am hopeful that your daughter will continue to recover, as our spinal cord is an amazingly resilient organ with high capacity for reorganization. It is fantastic that you guys did the 5K walk, amazing! COngratulations! Thanks for sharing. I totally agree that this forum has been an important help for me as well.