Well my husband is going in for his 3rd Angiogram on the 28th. The neurologist just informed me that they hope to find his AVM which they believe is in his spinal cord. But he says it can take years to find. At this point he just wants to find it to stop anymore damage, but the doctor actually said he expects my husband will never get better. With all the info we keep getting told, between the pain medicine department not wanting to help him, the neurologist,the neurosurgeon, and even his medical doctor things just don't seem to positive.
Lisa..I assume he has his neurosurgeon at Mayo Clinic. My hope also is that they find the location and size of his AVM during this Angio. Your husband will be in my thoughts and prayers. Please inform us after his angio on the 28th.
His neurosurgeon is at Cleveland Clinic. I will post after the angio. Thank You for the support.
Lisa..after his angio..I'm a true believer in getting second opinions..Is Mayo Clinic close enough that you could see them, as least for another opinion.
hope it all works out...God bless
Hello Lisa
How scary for you and your husband. Is there any way you can come to California to see doctors at UCSF or at Stanford? Or like Louisa has mentioned Mayo Clinic?
Angela
how can they be sure your husband suffers from an AVM if they do not even know where it is = have not seen it ?
why is no other imaging technology used to roughly localize a possible lesion ?
how can the doctors know your husband wont get better if they have no clue about the modalities of the lesion ?
We are in Cleveland,Ohio. With all the time we have to miss work to go to the doctors now we could never afford to go to the Mayo Clinic for a second opinion. I work for Cleveland Clinic so my insurance will not cover a second opinion outside of Cleveland Clinic's network. I feel like my hands are tied.
They have done several MRI/MRA's.
My husband donated a kidney to my brother in Nov of 2010. By Feb. 2011, few months after the transplant my husband began to complain of this tingling in his legs. I took him to a ortho to have his back looked at and as soon as the doctor looked at a ct scan that was done for transplant the ortho doctor said my husbands spinal cord looked like swiss cheese and he had MS. We were then sent to a neurologist who told us he had an AVM. But to be sure he did not have MS he sent us to the Mellen Center (which specializes in MS) a very experienced doctor from the National MS panel said she was 99.9% sure he had a AVM just by his symptoms. We were sent back to the neurologist who then sent us to a neurosurgeon. This will be his 3rd angiogram.
The reason we are being told he won't get better is, they say the longer it takes to find this AVM the more damage is done.
Ok I am so sorry I did not check your profile before to realize you have documented this already at http://www.avmsurvivors.org/forum/topics/info-on-a-spinal-avm
Did they explain to you why they could not locate the lesions in the previous two angiography examinations ?
It is really annoying that you are limited through your work's insurance.
Did you consider the option to remotly consult a dcotor about your husband's lesion e.g. send the MRI and/or angiography CDs to people offering such services?
No they have not explained why the lesions could not be located except to say that they can be so small. So I asked how can something so small cause so much trouble. All the doctors could say is they believe he has a branched off vessel that is trying to go from a high pressure flow to a low pressure flow, and until it becomes gorged it is not going to be easy to find. They keep saying it is like finding a needle in a haystack.
This makes no sense to me.
Why: You say the doctors told you lesions can be seen in MRI. If they suspect the lesions are vascular malformation, they will show in digital substraction angiography if filled with agent. Spinal cord is not perfused by too many arteries (no haystack). If they would feed any AVM, and you pumped saline into them, any AVM would show directly
If your aim is rapid diagnosis=>treatment go get another opinion no matter how difficult situation might seem.
Trust me I have had a hard time trying to figure this all out. As toward another opinion, we have had 6 doctors tell us that they are sure my husbands problem is all due to an AVM and 2 doctors tell us they believe it is MS. With all the blood work,3 MRI's,2 MRA's and 2 angiogram's you would think they would have located his AVM if there is one. The whole ordeal has been very frustrating.