Anyone with spinal AVM? Glue embolised? Recovered since?
My husband’s spinal AVM on the level of the vertebrae Thorax 11-12 was finally glue embolised 2 moths ago, but we can’t see a real improvement. Urinating difficulties, week legs, low sensibility of the feet stay with no improvement.
Does anyone got through a similar experience?
I too have a spinal AVM. It is in the cervical spine at C1 – C2. I’ve had no treatment because up until the Cyber-Knife there wasn’t a safe enough treatment as to not pose a very high risk of death or quadriplegia. I have numbness all down my right arm and my thumb, first and second fingertips are always numb. Since I’m right handed I fumble stuff a lot. When I’ve had a bleed my legs go weird, they are numb but have sensation, they are hard to control, I call them my Frankenstein legs and my right foot drops so that I trip over my own feet. My biggest complaint though is auditory. I have an extreme problem dealing with sound. Normal sounds drain my energy rapidly. Loud and unexpected sounds are painful to my brain. Hang in there. We’re all praying for your husband.
Kim
Hi Eli
I had glue embolisation for my brain bleed Oct 07. when it happened i lost all feeling down right side took me months to get out of bed but now i can walk about on flat surfaces about normal but going fast is best as if i go slow i tend to topple. i can’t do stairs easily but the numbness seems to have reduced to a tingling. hand writing is still hard as i tend to lose strenth after just doing signature, typing a bit of a weck also have to keep going back and correcting. torso was worse as no feeling front and back but getting better i just go o loo all the time to make sur i hve no accidents. things might not got back to completly 100% Eli and i know you will be sick of hearing this but it will improve with time, just keep reminding both of you its only been 2 months. Take Care.
Yes! I have a spinal avm! I had emolizations and a coil after a hemorrhage. Mine is lumbar and thoracic. I have numbness down the back of one leg and itching. My toes have poor circulation and some numbness. My last angiogram (when the coil was put in) will be two years ago at the end of May. I experienced weakness for months but have since regained strength. If I get up too fast my I will feel faint in the legs but have gone back to exercising normally. And I’m pretty active now! No big complaints.
I’ve always had digestive problems which were made worse by the medications (painkillers will constipate) and the catheters from the hospital. I experienced incontinence for a fews week and sometimes after that I found it difficult to urinate. I feel back to normal in that respect.
Give it some time. I felt 100 years old for months after my procedures but eventually got back to normal. I hope the same for your husband!
Good to hear from another spinal avm family!
Thank you Kim, and courage! We learned from my husband’s excellent radiologist-interventionist that one should not be in a hurry with these things, there are so many unknown parameters in neurology. And medical technology makes progress rapidly. Unfortunately, not rapidly enough for the one who suffers.
I suppose that you considered all the possibilities, but if you need any info concerning AVM treatments, hospitals or doctors in Brussels or Paris, please let me know, we might know a thing or two.
Eli
Hi Amanda,
Thank you. It is encouraging to know that you went better. We are aware that he will never get his lost capacities back completely, his doctor told us that he might recover from 0% to 80%. We do not even dream of the 80%. Just, two months after the embolisation, we see no progress - or, let’s say, an insignificant one. Of course, there is a long way to go in front of him. It took the AVM 3 years to put him in a wheelchair, I suppose the recovering process will take at least as long as that. The day he makes few steps on his crutches will be one of the happiest day of my life.
In the meantime, we try to make the best of every single moment. I believe that I do not have to explain to the members of this site how life is precious and beautiful and not a moment of it should be wasted. Courage !
Eli
Hi Kathryn,
Thank you for sharing your story with us and for your support. Indeed, it helps knowing we’re not alone out there struggling with the monster. And it is encouraging to hear that things eventually get better to an extent. Well yes, time… is on our side :-), yes it is !
Take care,
ELi
Hi there, my son suffered a spinal AVM in January this year aged just 13 years. He had it glued and has so far made quite a good recovery. He still has a convene and uses catheter bags as he cant fully empty his bladder or feel when he needs to go to the toilet. His feet still are hypersensitive and although he can walk without crutches a little, he does need his wheelchair still. He has amazed us all, and I hope given time your husband makes a great recovery too. my love to you all x
Hi Eli
Not sure if I can answer your question, I had 1X3 spinal avm at T12. I only had radiosurgery only as embolization was considered too risky as I had no bleeding. It has been about 4 months and I still have on-off weakness on my legs, I need crutches for long distance walk. I have no backache or issues with bladder/bowels though. My symptoms dated back to mild numbness in mid 2007, and my doctor says I need to be very patient as radiosurgery akes a while, I intend to do a MRI 2 months from now, and although he gave me neurontin(300mg X2) , I don’t think it help at all. And yes my doctor says I have 80% or recovery too,and is lucky to be walking, but i think it will be a slow one. My numbness is pretty bad, although I can live with it, the weakness is what irks me.
Regards
Chui hl
I would recommend anyone with a spinal AVM see an Interventional Radiologist and a Neurosurgeon and ask them if they can glue them closed. It worked for me and although it took two attempts with angiograms my symptoms were 98% releived and the chance of a bleed out is to great to not have them repaired. I would rather walk around with these headaches I ahev now than not be able to walk at all. My AVM was a result of an accident in the military in 1982 and grew from T-3 to C-3 and caused me to end up witha multitude of problems to the point I was walking with a cane and going down hill rapidly. The MAYO Clinic, Johns Hopkins and a lot of other clinics and hospitals are doing the procedures. My doctor was Creed Rucker here in Tucson az From Radiology Limited. HE is a wonder skilled docor.
Dale I do know some damage may take a while to heal after the pressure has been on the cord and it takes awhile for the inflamation to go away.
I am late to this discussion but I am happy to share my experience if you are still interested.
My spinal AVM was at the T-1, T-2 level, and it ruptured in 2002. I also have an aneurysm at the same level. Both were/are intramedullary (in the middle). They were embolized with onyx glue in 2006 and the AVM was obliterated. I still have the aneurysm. I’ll be going to the Barrow again in Sept. for my three year angiogram to make sure the AVM hasn’t grown back and to see how the embo in the aneurysm is holding up.
When I had the embo it did make the deficits I got from the bleed worse, and it also caused some of the same deficits in some other areas where I hadn’t previously had them. I’ve never had any ‘return’, or resolution of the deficits, from either the rupture or the embo. As a matter of fact, in the last year some of the symptoms have gotten a little worse.
When the embo was done the end of the catheter became stuck in the glue and they couldn’t get it out. So they had to break it off and leave it in there. I don’t know (I’ll ask in Sept.) if that could be causing some of the newer symptoms or not. I don’t know if that can cause any swelling in the cord or not. My last MRI, about a year and a half ago, showed that my spinal cord, where the AVM was and the aneurysm are, has shrunk - I don’t mean from swelling, but the cord has like atrophied or something like that. I don’t know if that can cause or add to any of these symptoms/deficits either.
Don’t let how things have gone with me discourage you though, because first, everyone is different, and second, it can take up to a year or longer (even years) to get any return and have the symptoms clear up. It’s still pretty soon after your husbands treatment, even now.
I hope since you first posted this thread your husband has had full, or at least some good, recovery.
Best to you both.
i have also spinal avm from t9-t12…i undergo spine laminectomy procedure… i have severe backpain…after surgery i cant move my legs… and i used catheter and wheelchair…my legs atrophied…
Hi everyone.
My brother had spinal avm two months ago. He is paralysed somehow and we cant see no improvement. How is your husband doing nowadays? Did he have any improvement?
Hi Zehra
Sorry to hear about your brother. Is your brother feeling any sensation when pinched with a needle.
My 9 year old daughter had spinal surgery to remove complex AVM in June 2016 by Dr Spetzler. With god’s blessing she is normal now and walking . I thank God every day.
Immediately after the surgery the doctors pinched my daughters legs and she felt the pain. She could not walk for one week, she was walking with lot of help in 2 weeks. She walked independently in one month.
Have positive thoughts and encourage your brother. He needs lot of therapy done by professionals.
Good luck.
Dear dad
Thanks for your reply. sorry for my bad english. I am so happy your daughter is ok now. Thank God. My brother has sensation now but he doesnt have any improvement in his movement. He had the surgery in Iran by Dr Qorbani and i dont know whether he is a professional one or not. Unfortunately he has the bed sore so he cant be taken to the therpist center every day so i go to his house and use an electric massager. Could you tell me if you have any suggestion?
Thanks again
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