Anyone with AVM at C1 C2 level to share experience with?
My sister has a large 3 cm AVM at C1/C2 level. We found out about it in 2004 but were advised to leave it since it is in a critical location in an area directly responsible for the heart, lungs and limbs. Since then she has been having pain and burning in her right side of body. There were few episodes of greater pain mostly localized to the head, neck and shoulders. It affected her life generally such as inability to continue pregnancy and had to abort twice.
A month ago she had extraordinary complication, she had pain and numbness throughout her full body, and she could not move any part of her body and were unable to speak. She stopped breathing and was given mouth to mouth by a person who accidently happened to be there till an ambulance arrived. MRI showed that the AVM had bled. Thanks God, She started recovering however she feels a burning and numbness in her right half of the body. She is still unable to walk, but we hope she will improve further with physiotherapy.
Now that the risk of re-bleeding is higher, we are wondering if anything can be done.
I need to share experience with people who have/had at this location or who have relatives which such condition.
My son had a large diffused spinal AVM at the C7T1 level which was deemed inoperable. We realised it because he had a bleed. He made a full recovery but given his age (he was 18 at that point) we had to do something as the risk of a re-bleed due to not doing something was high at some stage in his life. We decided to go with Dr. Emmanuel Houdart as all other options were deemed too dangerous. He does particle embolisation and this is a low risk procedure. My advice will be to contact him via email and take it from there. His email address is ■■■■■■■■■■■■■■■■■■■■■■■■■■■■. He is very prompt and helpful and willing to help. You can mention that you were referred by Ajit Bhushan. He knows me well.
You are very welcome and thank you for asking about my son. He is doing well. He made a full recovery from the bleed. His AVM has shrunk very significantly and as per Prof Houdart the risk of another bleed is very low. However he has to gofer checkups every 2 years at this stage which is not too bad.
DO get in touch with Prof Houdart. It can only help
Oman,
My AVM was almost in an identical place to your sisters mine was just a little larger. I began having headaches at first, then pain in my neck and shoulders, soreness in the back of my head, and then one day I just couldn’t get out of bed without my husband’s help. I was actually one of the lucky ones as my AVM never bled, but it did expand to the extent that nerve damage was done to my spinal cord and I now suffer from constant headaches and neck and shoulder pain as well as neuropathy. I had a laminectomy to correct my AVM so the top portion of my spine was removed from right below the base of my skull down to in between my shoulder blades. It is a strange looking scar but at least I am still alive and walking and talking. My surgery was done by the head of neurosurgery at Emory university and his name is dr. Daniel Barrow. I would highly recommend him to you as I don’t think I would be here without him.
Hi Oman I had an intra medullary AVM removed from C3/4/5. As Christina said they did laminectomies C3 to C6 to access and remove the AVM.
It was discovered when it bled. I had very little effect from the bleed bar the initial pain phase. Post op I have left sided weakness, alteration to my eye sight, left arm neuropathic pain, very reduced sensation from the neck down but motor power is good. I do struggle to maintain my blood pressure sometimes which can be an issue on and off.
I wish you and your sister all the best. I'm in the UK.
I contacted Dr. Emmanuel Houdart. He was prompt in replying and clear in his explanation and statements.
Unfortunetly he indicated that in my sister's case, particle embolisation would not be suitalbe because the avm is a high flow avm and is large in size.
Hi Oman The surgeon I saw felt embolisation would be too risky for me if something went wrong during the process. He felt he wouldn't be able to deal with problems in the way that he could deal with something during open surgery. That may be related to the location of the embolisation team versus theatres in our area which may be very different where you are, it may have been because of the nature of the AVM itself, the recent bleed or other factors.
I know that during the surgery there were two neurosurgeons, a neurophysiologist doing constant monitoring of nerve function etc, the rest of the team, anaesthetists etc., so I guess that should it have bleed or some other event happened by being in a theatre they would have surgical access, staff and equipment to deal with it all immediately at hand.
Perhaps it was the level that made him think that way or its size or position. He did comment that they couldn't be certain what nerves and vessels parts of the AVM was feeding. I didn't question him on that as personally I felt more comfortable with the though of open surgery and decisions to remove parts of the AVM only being made after clamping each part for 10 mins to allow any nerve damage to reveal itself. Having said that the surgery is not without it's own after effects that perhaps embolisation would have avoided for me.
The main thing is that your sister and your family are happy that you have had all the information you need to make the decision and that you are comfortable with the treatment route you chose. I was unbelievable calm by the time I was admitted. I had a great nights sleep before the operation and approached it on the day without any worries at all. Hopefully what ever route your sister chooses she can feel that way at the time too, I'm sure it helps.
This is my understanding too. Have you talked to a neuro radiologist in this regard. The person in UK that I am aware of is Stefan Brew. I had also consulted with Dr. Alejandro Berenstein in Centre of Endovascular surgery in New York. If we had to go for glue embolisation he would have been my preferred choice. He had explained how he did it and how he tried to minimise the risk.
I would like to pay tribute to all who responded to my enquiry or shared their own experiences in the group. The information was very helpful.
A special big THANKS to AB
who was the main lead into the path we have taken.
My sister has had her 1st Embolization performed by Professor Emmanuel Houdart at Hôpital Lariboisière, Paris on the 4th Feb 2016. 50% of the rather large and critical AVM was embolized in a five hours procedure. After which the Professor had to stop due to the amount of dye injected that did not allow him to continue. Glue was used. A second embolization is scheduled after 6 months. Thanks to the Lord almighty the 1st Embolization was a complete success enabled by the continued prayers and skilled hands and expertise of Professor Emmanuel Houdart.
It was very difficult to take the decision to go for embolization but the increased risk of re-bleeding and it’s catastrophic results urged us to go ahead.
I am happy to share with you that my sister had a 2nd embolization session which also went successful, most of the AVM is blocked now but a small section still remains. The doctor could not embolize it all because of the length and complex procedure. The 2nd embolization took about 5 hours.
We are grateful to God and to Professor Emmanuel Houdart and to AB from avmsurvivors.org.
She is still on medication to alleviate the pain and aches from the earlier bleeding. She is continually doing physiotherapy by herself at home.