Hi everyone! I am a new member of this group.
I have done laminectomy in 1988(paralyzed about 3/4yr and can walk gradually in 1992), and 3 embolisation in 2007/8, angiogram in 1999 & in 2011 (for 2011 because the weakness both legs),after that, I can walk without cane. Last Dec I felt weakness for both legs again and done MRI in Feb. One week later returned to clinic to see the report, the neuro doctor said residual thoracic spinal AVM, more extensive and enlarged since last MRI in 2012. Now, I can barely walk fews step and feel cannot move from waist down, use wheel chair oftern.
Today(the follow up), the neuro dr. said my avm is damage my spinal cord & nothing can be done for me, I said I can't just sit here and wait my spinal worse that before. He said will discuss with other dr. to see if I can receive angiogram again, wait their call,if no, see him again next month.
He also said my case is the worst in spinal avm and will paralyze eventually...just feel no hope again! I just 41, first found avm in my 14, suffer from avm about 27 years, now I feel very tired an no courage to cope with these problems again!
Sorry to hear my complain, just want to share my feeling (my eng is not good because I come from Hong Kong)
Hello Emily Lee,
I feel your pain and I am sorry you have to go through this. I find peace with my situation by giving it to God. I've been dealing with my AVM for 27 years as well. I don't know if it is available anywhere near you but please look into finding the Cyber Knife for treatment. It is the next step up from the Gamma Knife, much more precise. My story is out here if you want to know. I'll pray for you.
I see the doctor in our public hospital, the patient can't choose which ways to cure our disease, the doctor make the decision for us. We can choose in private hospital but the cost is very high that we can't afford, so our people usually go in public hospital(I think our public health system from gov't are different). I don't know if the doctor consider cyber knife or gamma knife in my case. Now, I just wait and wait...
i hope you find a solution.
I will pray for you
Dear Emily Lee,
I realize that you and I live in quite different parts of this huge world and our cultures are extremely different. Even so I find it difficult to accept that the patient is told to shut up and be quiet and accept whatever decision they make and you have no say in the matter. It is your body, you are a human being, made in the image of the Almighty God. You have infinite worth because of that.
So would it be considered improper or impolite to speak up and ask about the Cyber Knife or even the Gamma Knife? If so, so what. What have you got to lose but to ruffle a few of their feathers. Maybe even melt a heart of stone. You certainly can’t be worse off by asking.
Maybe you could present it in a way that would stroke their ego, you know, like tell them how they would be able to brag about how they cured you and saved you from paralysis and you are now a productive member of society again. It could end up that way.
Please don’t give up hope, with God all things are possible.
Hi Emily Lee,
I feel for you. Everyone who has an AVM has different histories. My AVM was discovered 40 yrs ago when I was just 15 n paralysed when I was 27.
There is so much more knowledge about Avm’s these days so I hope yr Dr can refer you to another Dr who can look at your case again. Take care, we are all here to support one another.
Thanks for your concern. I will give the advice to the doctor, hope they will consider this option. I just feel happy the doctor will handle my case & will discuss with other neuro doctor.
I believe God will protect us and don't leave us alone to face the problem!
Thanks Diane. My doctor will handle my case & will discuss with other neuro doctors. Hope they can find out the best option for me. U take care too & God bless u!
hello from germany. Your story is similar to mine. After several embolisations and the first laminectomy, in february 2013, they detected new AVM in a critial area, at the major atery in the spinal cord. And the neuroradiologist and neurosurgeon told me: Go home, and wait for further plans / strategy. Cause no one wanted to make this - too high risk. So at home - no future, what will happen. And in this weeks I get pulmonary embolism / DVT. then in april the neurosurgeon called me to his office in hospital. he told me: I make the surgery. I am the ashole here cause no one wants, but I know, if we dont make the surgery you can die (bloodthinner therapy). so in june 2013 he made the final surgery. and went well. ok, brown sequard syndrom, left para, right numb, bladder and bowel issues. but alive. so at the end you will see: they make the surgery and the future is yours. best wishes for you !
I had DSA in May and will see the doctor end of June, the doctor said they will review the report and see how to solve the problem. Now I can walk with walker but just for fews steps, mostly I use wheelchair. I feel numb both legs and weak, bladder & bowel issues also, so just make me feel depression. Hope I can do embolizations and will recover soon.
I have had similar issues, I had 6 angiograms 2 embrolisations and no one wanted to go any further, until we heard about Prof Honqi Zhang from Beijing he is amazing surgeon with lots of experience of complex spinal AVM/F. he works out of a private and public hospital hospital. He may be able to help. He flew out to Cape Town to do my operation and my treating neurosurgeons were in awe of him. I will try get his email for you.
Hang in there.