Anyone else out there dealing with neuro stuff mostly on their own?

Colleen, thank you immensely for your help, support and phenomenal information!🫵🙏💯 You've done it again. I didn't know that any of these resources existed (regarding getting a clinical trial at The Mayo Clinic). I'll contact them immediately.

Thanks again for your help with this Colleen.

@carniplant I hope they can help you!

I have. I was the one that actually found the abnormal tests from two years ago that they never told him about. His primary care has not seen him since 1/2023 even with us making multiple requests. Primary care has to make referrals to specialists that requests have been ignored. We have filed complaints with the VA, letters to congressman, White House VA hotline, and joint commission. But just getting apologies and excuses, still no answers.

I just wanted to add that my uncle is treated at VA hospital in Durham, NC and seems to have excellent care.

The not knowing and not getting answers sooner would sure be helpful. It does help also to
talk with others. Good luck, keep the faith.

in reply @hnrharrison I would immediately get an appt with a primary care physician, the sooner the better. Also if they try to schedule you in 2-3 months that is unacceptable! Tell them about the MRI results that were done and use that as leverage to get what you want. How were you informed that the scans were abnormal?
Next should be an evaluation with a neurologist to further explain. If you are not getting responses. File a complaint and walk yourself straight to the Administration department to speak with a patient advocate or someone from Quality Assurance! Remember the saying of the squeaky wheel.

The Primary Care is who ordered all his tests and who has ignored our requests. We have made multiple complaints. Unfortunately we are dealing with the VA.

I am a Registered nurse and worked in the VA system, in fact retired, from it. I would call the Quality Assurance office every day and then start calling the office of the Chief of Staff! If you continue to be ignored.....start the same thing with your Congressman. Do not give up! I am also a Veteran and served in the Army Nurse Corp for 10 years. Let me think and I may come up with more ideas!

We have filed a congressional investigation, 3 White House complaints, I’ve been sending emails all over the VA and managed to get the attention of VISN. We have spoken to the director and deputy chief of staff. They have acknowledged that he has not been treated appropriately but they are just giving us excuses and apologies. They are still dragging their heels on actually doing anything. So I’ve also complained to OIG and Joint Commission. In my opinion this should be investigated as a sentinel event and gross negligence. Unfortunately at this point I don’t feel comfortable trusting them with his care even if they finally do see him. That is why I am trying to find someone to at least review his imaging reports for a second opinion.

I apologize I did not read carefully your prior posts. You have done exactly what needs to be done in this, in fact, Sentinel Event. I wouldn't feel comfortable either with seeking continued care at that particular VA. Inn doing research for my own issues I did come across a program that I believe John Hopkins offers for 2nd opinions. (I will double check that it is JH). There, of course, is a fee attached, as I recall of $1500 for Tele-medicine 2nd opinion clinic review. I don't know whether insurance would cover the cost. At least, with a 2nd opinion, you would know how to proceed with medical care. I am very impressed with the process that you have gone through. Not many would know how to do that!