Bad Times x

Dannii · #1 (**permalink**) 10-07-2010, 10:57 AM

Hello

,

I have been having ongoing back problems for the last 3 years, I found out in June 2010 that I have AVM in my spine. Since finding out, I have had a head scan as I have problems with my arms, I am awaiting these results. I find this condition fustrating, annoying, life controlling and a dam right nusence. I have been signed off work since april,after loosing the feelings in my legs which lasted for 7 hours, but lucky enough I havent lost the feelings since, I have good and bad days, one day i can do the washing, walk the dog, do the house work etc, then the next day, I can't move and i feel really cold and tired. I generally find day to day tasks hard, i am unable to pick up heavy things like the washing basket when its full, cant pick up the kettle, I go to pick something up and I have no grip what so ever...I can't pick up my daughter, or hoover up..I feel useless!! I have also lost at least a stone and a half in weight due to not eating for being so ill.

I am open to talking x

ken · #2 (**permalink**) 10-10-2010, 09:19 AM

Dannii,
I had a spinal avm 5 years ago. When i was brought in i was paralyzed from thje waist down and could'nt urinate. I also had a herniated disc. After the operation, i was able to walk using a walker and after 3 months was able to urinate naturally. Today, i have some pain but am able to walk and do mosat things normally. Take it easy until your operation and try to stay positive. Ken

Dannii · #3 (**permalink**) 10-11-2010, 03:50 AM

Thanks for your response.

Its a horrible thing to go through when you speak to others about, the look at me as if to say ye what ever because they don't understand,

Its just so annoying knowing that my neurologist knows whats wrong but yet everything keeps getting delayed, it just hurts so much it makes me feel so angry because its ruling my life! I'm not used to doing nothing alday every day! not being able to drive my car etc sometimes i wonder why i'm still here! But then I just think about my little girl. I'm getting married June 2011, I hope its all done before then thats all I want.! x

ken · #4 (**permalink**) 10-11-2010, 04:48 PM

There are 2 ways to cure the avm. One is called embolization, A type of glue is injected into the vein that is causing the avm. This is done through a catheter that is put into an artery in your groin and then pushed into the area where the avm is located.
This is the least dangerous method if it can be used for your problem.
The second method involves surgery done directly into your spine.
The longer you wait to deal with this type of nerve damage, the more permanent damage is done.

Dannii · #5 (**permalink**) 11-27-2010, 04:59 PM

Hi,

Just a quick update,

I have had my follow up appointment and my neurologist has told me that there us noting wrong with me and that there is nothing that can be done to make me better!

How furious am i!!

xx

AVMowner · #6 (**permalink**) 03-09-2011, 03:08 PM

Dannii,
Don't take no for an answer. If you have not had an MRI GET ONE. Doctors do not always know best. It is your life. I have seen every sort of specialist I could. I have seen 3 different neurologists. I had a second and third opinion.
In my case it is down to the best types of medication to cope with the pain and sensations. Try a different doctor or two. If you don't push who will. We all know it is very frustrating. This is a very rare formation in the spine, only a very few of us have. 1 in a million sort of thing. You have to do the research and give it to the doctors. Only then they might listen.
Take care.