Hello I am new to this website, so hello everyone!
I have an AVM located T6 - T7, diagnosed 8 years ago. Had embolisation and it remained stable door 7 years. Last August I had a bleed, resulting in much more complicated AVM with an anureysum. Dec '13 had open surgery and 50% of the AVM was reduced. My nuresurgeon has recommended Cyber Knife.
Has anyone here any experience of Cyber Knife - good or bad I would love to hear your stories.
My son had a spinal AVM at C7-T1. We had looked at Cyberknife but were advised against it due to lack of long history and that long term implications on the spine were not known. We therefore stayed away from this. So I would urge you to evaluate it carefully before proceeding with it. In this context Cyberknife was developed by John Adler who was from Stanford University in California. I would therefore also suggest you contact Robert Dodd at the university as Stanford probably has the largest case history in this area. Ask them for their latest published research.
Having said this I would urge you to talk to Prof Houdart at Hospital Lariboisiere. He is the head of Neuroradiology at the Hospital. They do particle embolisation. While this requires continued treatment over few years at least the good news is that people who underwent his treatment did not suffer bleeds. It is also one of the lowest risk treatments. He treated my son and did a wonderful job. Also his methodology is such that it can embolise AVMs that other techniques cannot reach due to complexity / high risk. In our case the doctors at INN said they would not embolise due to risks involved. So while I understand yu have looked at repeat embolisation and only went for surgery as that was not possible I would still urge you to talk to him for the remaining AVM as he has a different technique. He is easily reachable and very helpful.
In UK u may want to talk to people in INN at Queen Square. Another possible person is Maneesh Patel a neuroradiologist at Charing Cross.
All the best and lo let me know if you need any more information.
I have same AVM at t-6 and t-7!! Mine is now inoperable after a failed surgery and failed embolization. Jen Lynn
My son had one at C7-T1. Most doctors were not willing to operate and those that were were talking of high risk of creating a deficit. Also doctors in UK were not willing to embolise as they used glue embolisation. SO we went to France where they use a different methodology which lowers the risks involved and can potentially treat cases which are difficult to treat using glue embolisation. SuperJenLynn have you looked at this.
Hello sorry for late reply, I have decided against cyberknife, I was told the risks were high for further nureological problems. I am currently deciding if it have another go at embolisation. I read your post and have not heard of particle emboli station before, I think it sounds very interesting and I will look into it. Any other advice? All gratefully received
Not much more except to suggest that as a first step you contact Dr. Houdart. If you PM me I am happy to give his contact details. You should also be able to get them from the web. He is very responsive and helpful.
He will of course at some stage need to see your latest test results. In our case we had couriered him the MRI and angiogram results along with a letter from our neurosurgeon.
All the very best.
Hi Ab, trying to inbox you…but not sure how!
Hi Stephanie I hope you are well I also have a spinal avm its at l1 its located inside the spinal cord so it has been inoperable so far due to the high risk of been paralysed so recently I’ve met with my neurosurgeon and he has recommenced me for cyber knife it had only began to be used here in Ireland I haven’t heard of many risks that have been mentioned here anyway I holding to have in done very shortly hopefully the next few weeks as I have started losing a lot of feeling in my leg so its the best option for me if I have the cyber knife done I will keep you informed it may help you to understand it more
Hello Padrig, good to hear from you. I am still deciding if to have Cyberknife or not, my surgeon told me last week there would be a 25% of nuerological damage with 2 to 3 years. Part of My AVM also goes into my spinal cord. Since my bleed in Aug my legs remain weak, I can get around the house ok, but tire quickly, when I go out I use crutches. What other symptoms do you have?
Hi Stephanie I know what you mean about cyber knife I really don’t know a lot about just that my Dr thinks its the best chance I have my symptoms have been on going for 7 years now started off with a lot of back pain then got sciatica in both legs really badly for the last 6 years and now I have lost sensation in my right leg and my knee is very weak it gives way sometimes a lit more so lately my avm has crushed my sciatic nerve because of been compressed its a strange feeling I am able to walk though thankfully I find stairs and hill hard to manage but I am very lucky so far as I haven’t had a bleed
Hi Padraig, it’s a scary decision to make for sure. My knee sometimes gives way too, I have a number of odd symptoms, worse since my bleed
Dear Padraig / Stephanie
On Cyberknife in case you investigate this option please do ask them for how many cases they have treated and over what time frame. Also I would recommend that you connect with Stanford Medical Center. This is because the Cyberknife machine was developed by one of the doctors there, I believe it was Dr. John Adler. Also my understanding is that they have one of the largest case history of treating spinal AVMs using Cyberknife. Dr Steven Chang is the leader there.
Hope you are well. I had a C4/5 AVM which bled.
I was advised that embolism/cyber knife weren't appropriate as they couldn't control any complications that may have occurred during the treatment etc etc. At such a high level breathing and swallow are compromised so that may have been a risk too far for them. They also weren't sure exactly which vessels fed what nerves etc.
I was given the option of open surgical excision or live with the risks. I had my surgery in the UK and they managed to completely remove the AVM at one sitting ( a small bit was left due too the risk of damage getting too high but this withered away over the first week post op ). During the surgery they monitored my nerve responses so they clipped, waited and watched the monitors for 10 minutes and then cut or released.
I'm not what I was but considering the level etc I've done really well. Like you I have leg weakness but also have altered sensation from my neck down, missing reflexes and lack of temperature sensation, and so the list goes on etc., but I am working, back in my old job part time.
Good luck with your decisions. Don't be rushed but be confident yourself with the decision you make before you go ahead. Tx :)