AVM Survivors Network

Site relaunch: Wondering where all the spinal AVM posts are?


Hi I have had a diagnosis of a spinal AVM since December 2015. Variety symptoms for many years. Currently Lots of active symptoms , numbness.pins and needles. Weakness. Headaches.bowels.dizzines and pretty much more from my head to my toes. Recent change in November 2016 where I had a suspected bleed. Waiting to see a specialist on Monday , hope they can help and I get some answers.


Is the bladder and bowel issues now little better after 32 yrs? Really, this two things are sooooo bad for daily life, taking part in social life. Best wishes !


Wish you the best, a good result ! AVM survivors rules !


Hi Mandaayr

How are you doing. My spinal AVM was discovered back in 1971 but I was just 15 then so my mother never told me. I’d been tripping over n my right leg was skinnier than the left n wd lock at the knee. An op was performed then n I was told to get on n enjoy life which I trip to but 9 yrs later had back ache in the lumber area but was fobbed off by being told that all secretaries have back ache. In 84 I woke up with horrendous shooting pains around my chest n by the end of the day I was paralysed n haven’t walked since. Life has not been all doom n gloom but now at 61 I’ve had enough of pain.

I hope yr life improves n if u like we can support one another. Dize x


Sorry to have repeated myself. It must be cos I’m 61 tomorrow! So sing Happy Birthday to me if u like. Lol! Having a gsoh helps don’t u think so everyone? X

split this topic #26

A post was split to a new topic: Brother with Spinal AVM Help!


Happy Birthday Dize :gift::confetti_ball::tada:
You are very right a gsoh is needed ! :grin:

I have lots of symptoms that hang around for a while, get worse, then back to my “normal” :roll_eyes:. Balance and Tripping over my own feet because my left leg feels heavy sometime. Probably because I am very conscious of it I sometimes feel I must look drunk.

Where you from Dize ? I am in Ayr, Scotland but don’t have anybody I know with same condition. My consultant says People with AVM’s are unique and he only has 3 people on his patient list with the kind of complex AVM I have. It difficult not having people who understand that is why this site and the people on it are very important to me.

You say it’s not all been doom and gloom and that’s good to hear. It’s the thought of the anaurysm’s that Stick in my mind. I worry a lot about the future and any new strange headache or symptoms scare me.

Waiting to get another MRI with contrast. This is to give them an idea what has changed over a year. I was meant to get it a few weeks ago but got all the way there, lying ready to go in the machine and I panicked ! Was so upset that they could not do it. I felt such a failure because I need this done for some answers. Having to go back and either get more sedated or knocked out.

Meantime I just try to live life as best as I can and try not to worry.



Hiya Dize

My apologies for writing my post all about me ! You say about pain, is this managed at all with medication ? Are there times when it is worse ?

Mandaayr xx


Hi Duke, I had a spinal AVM removed March 2017. I am wondering what you mean when you say “Secondly that new nerves and nerve strengthing could occur along active but challenged pathways if the living nerves were excited and challenged.” how do you excite and or challenge nerves?
Also, what do you mean by saying “Third, I could create, monitor and continuously improve the nerve challenges so that they would indeed strengthen and grow new cells.” how do you do this?? and lastly, how do you determine the length of the nerve you need to regrow??
How are you feeling today? Are things still improving for you?


You need to understand that I am not a medical doctor. Thus anything that I believe to be might not be. What I write seems logical to me an untrained person and my experiences do not appear to contradict what I wrote.

To answer your comments: from what I understand is that a nerve cell might be weak but not dead. I believe that AVMs probably decrease blood flow to the nerves that the veins and arteries associated with those AVMs serviced. Also, as I understand it, our bodies tend to have next to redundant systems. So if a vein or artery is weakened nearby veins or arteries tend to partially increase their service to those areas. Given these, what I believe to be facts, it makes some sense (pun intended) that weakened nerves if they are still alive might improve their strength. By why would they do that? My guess is that they would need to be stimulated. I will get back to that.

My previous understanding on the ability of the body to grow new nerve cells was probably wrong. My new understanding is that if the root of a nerve cell dies than more than likely another root cell will not replace it. I need to read more. But I have good news for myself and hopefully you.

What I have found is that the more physical exercise I do the better I feel and that my physical,abilities have greatly improved. I now can rid a bicycle for example. Please understand that when Imwas in my twenties, thirties, forties and fifties Imwould regularly ride my bike up to twenty miles a day. And even into my earlymsixties I,would ride four miles to,work and 4.5 miles back,home over a five hundred foot mountain (the return trip,had a higher climb required so I needed to take a less steep but longer hill). I can not do that now but I do ride three days a week on the flat up to six and sometimes eight miles.

About three years ago I started paddling in six man outrigger caneos. I noticed that the rubber band exercises I,did to,strengthen my back,had the same motion as paddling. So I now paddle for a good 65 and 60"year old crews on Maui. We probably will not make the state meet this year but that is not on me as I am one of,the stronger paddlers.

I also walk three miles,every day. Currently I am visiting in the San Francisco,area in a very hilly section so the three miles of up and down take me approximately an hour. Back home, where ai do,the walks on the beach they take forty toforty five minutes. Now these walks start with me in great pain on the bottom of my feet. And all through my walks, if I,think about my feet, they really hurt. But by the end of the walks theyare sort of numb. At the ends of the walks my legs are still,are,hard to control and walking slowly and in crowded areas is not easy; walkng fast in places where I need not place my feet accurately is much easier. If I,skip a day of walking the next day is harder. If I skip two it is very hard to get a full three miles in. It took me about ayear to get the first three mile walk in. But now I know how I,will feel if I do not get it done.

So my point is this. The nerves and muscles need to be challenged. The muscles will atrophy. As the nerves tell the muscles what to do and the nerves are impaired so are the muscles. I never expect my nerves to be fully functional. But my muscles seem to be learning how to,work,under less direction.

I hope I,have answered your questions. I take no medications. Many have been prescribed but to me they have so many side effects and NONE are cures. They might take the pain away but I do not wish any dependency.

If you have anothermwuestion please ask. Duke


Duke, perfect comment. This is the only way we can try. My PT told me the same. Challenging every day, neverending. We have to practise harder then other ppl. Best wishes !


Michael and Duke,

Thank you for your support. I know I need to exercise more than I do now. I was very active prior to the AVM surgery and I think that really is helping in my recovery. I have an amazing PT group at the Rehabilitation Institute of Michigan (RIM). I go there 2 days a week for 3 hours each day. The favorite part for me is the FES elliptical machine. I feel best when I am done doing that. I have high hopes for myself and I feel the sorrow and the pain of all of you that suffer alongside of me. It is crazy how life works.
I am currently on a pretty high dose of gabapentin and I take baclofen. I am nervous taking the meds so I am beginning to reduce my dosage gradually to see if I really need them. I have expressed my fears to my doctor and he told me that the only way to find out if I don’t need the meds is to gradually reduce them and see what happens.
My injury is very new and I know I need to be more patient than I am being.


Hi Duke, I would like to hear about your AVM discovery, repair, and recovery. Did you lose your profile when the site relaunched? Nevermind. I found your history.


I am not a fan of meds so I took each of the two you mentioned for a very brief time as they affected my thinking process and made my balance issues a little worse. So I am happy I never really got into using them.