New to the board and awaiting a confirmed diagnosis

I am not really in the mood to talk about it all, but today I saw the dr who stated he is leaning heavily towards a spinal svm. this is the 2nd doctor to say this. 2yrs ago I suffered from unexplained back pain and the loss of use of my left leg. Reading about AVMs describe me to a 'T'.

I am happy to finally have a direction after two years but I am also scared and not sure what to expect. I am a wife, mother of 3 and sometimes a single parent as my husband is in the army. The Dr mentioned that the next time i have a bleed (my husband and I have inferred the bleed based on what we have read and what I experienced) i might not recover and could be permanently paralyzed!

I am hoping to find some quidance here as well as support and information.

Ashley

Welcome to the group Ashley.

Feel free to ask anything here, whenever you feel comfortable. Chances are, someone here has experienced it.

I guess I’m not understanding that if you had a bleed, why didn’t the doctors do something about it, or at least offer you some options at the time.

In re-reading your note the doctor is “leaning heavily towards…”. Hey, it’s not that tough to determine if you have an AVM or NOT. If he isn’t competent to make that determination, I’d sure be going somewhere the Doctor COULD say with certainty “this is what you have and here are your options.”

Johns Hopkins is good, but I don’t know if they are advanced in AVMs or not. If they haven’t treated a slug of AVMs, I’d suggest Mass General in Boston. There might be others, I don’t know.

Two years to get a diagnosis is criminal in my mind.

I wish you well.

Ron, KS

Thank you Ron. Part of the problem with getting a diagnosis is that we are military and have moved 3 times in the last 2 yrs. The original doctors really had no clue what to look at (we were actually in TOpeka), then we found a neurosurgeon in St Louis who suspected AVM and then we had to move again. I actually like the dr I have now. yesterday was my first appointment with him and he said “what you have is not common, but we see many ppl with this from all over the US here in the clinic, so for us it is not so rare.”

I think that when my first incident occured, drs just thought it was a slipped disc and even said the leg parathesis was unexplained. It is criminal and it has been a long journey. I was even told for a while that perhaps it was early MS without any brain lesions showing. OY!

I amstill processing and feeling all sorts of anger.



Ron, KS said:
Welcome to the group Ashley.

Feel free to ask anything here, whenever you feel comfortable. Chances are, someone here has experienced it.

I guess I'm not understanding that if you had a bleed, why didn't the doctors do something about it, or at least offer you some options at the time.

In re-reading your note the doctor is "leaning heavily towards...........". Hey, it's not that tough to determine if you have an AVM or NOT. If he isn't competent to make that determination, I'd sure be going somewhere the Doctor COULD say with certainty "this is what you have and here are your options."

Johns Hopkins is good, but I don't know if they are advanced in AVMs or not. If they haven't treated a slug of AVMs, I'd suggest Mass General in Boston. There might be others, I don't know.

Two years to get a diagnosis is criminal in my mind.

I wish you well.

Ron, KS

Welcome to the group. Best of luck to you and our prays will be with you.

Hi Ashley, welcome to the site.

I have a spinal cord AVM (and an aneurysm), at the C-7 to T-2 levels. I was left with severe deficits on most of my left side after the AVM bled, and have since developed deficits on some of the right side as well.

Have you had an angiogram, or at least an MRI, and do you know at what level the AVM is? Has your Dr. discussed how s/he will determine for sure what you have?

I have been active duty military for almost 17 yrs myself, so I feel your pain. I was recently diagnosed with a peripheral AVM. I cannot even go thru tricare, I have to rely soley on military doctors, especially since we are stationed overseas. I am currently medivaced to CONUS to try and deal with this for several months and my wife and young son are not even authorized to be here with me. I am about to come out-of-pocket to get another opinion just to make sure I am gettting the correct treatment.

Sorry Ashely, after I made my post I saw another one of yours where you said you have an MRI and possibly an angio coming up soon.

Hope you’ll let us know what they find.

Thank you all. I will call the clinic (s seperate clinic does the MRIs?) if I don’t hear from them by THursday. That will give them a whole week to schedule me.