Not what we hoped for

It’s been a busy couple of months for us, and after months of fighting the system, tests, tests and more tests, we finally have a few answers. Unfortunately not the ones we wanted. Hubby has numerous AVMs in his neck and the base of his brain as well as his spine. 2 in his spine are the most troublesome. A CT, MRA and spinal angiogram have shown that there is nothing that should be done. What can be done is considered to risky and while my hubby still has control of his bowel and bladder, they will leave well alone. Our specialist said he has never seen anything like my hubbies scans. His scans are being sent to all and sundry in the hope of someone having some idea of what next. The most likely scenario is consider to be a continued deterioration in his legs and arms, Big possibility of a spinal stroke. my hubby walks with the aid of 2 walking sticks but it is becoming more and more difficult. there is also some deterioration in his hands as well. Hopefully someone will have some more light to shed and despite the outlook, we’ll get some better news, for now, life is for living and live it we will.

I’m sorry that the news wasn’t what you and your hubby wanted. Have you considered getting another opinion? It may be worthwhile…
I wish you and you hubby the best!

Hi Tim. This is our 2nd opinion. While it was a lot more informative and I guess in a way the additional information was a little more comforting, the outcome was the same as out first opinion. I guess it’s unfortunate that my hubbies case is so unusual that finding assistance will be difficult. Fortunately our specialist is also interested in finding out more and he is forwarding the information to people more knowledgeable than he. The fact that my hubby has 2 genetic issues, HHT and Marfan syndrome with no known connection between the 2 is also creating problems. But onward and upward we say.

Hi Tim. This is our 2nd opinion. While it was a lot more informative and I guess in a way the additional information was a little more comforting, the outcome was the same as out first opinion. I guess it’s unfortunate that my hubbies case is so unusual that finding assistance will be difficult. Fortunately our specialist is also interested in finding out more and he is forwarding the information to people more knowledgeable than he. The fact that my hubby has 2 genetic issues, HHT and Marfan syndrome with no known connection between the 2 is also creating problems. But onward and upward we say.

Jules, sorry to hear it. But there are bright spots in the situation, chief among them a bride with a great attitude. Your husband and I have that in common, and it’s so critical. Just ask my better half! :wink: The internet is an amazing thing, allowing people to reach all corners of the globe. May your Specialist find what’s needed. All the best!