I'm sorry to hear you had the same experience with Craig Hospital.

It's taken so long for a response because I'm packing to move this weekend while also preparing for Thanksgiving - I've added stuff when I can...might be jumbled.

Well hell...Kaiser. To be perfectly honest - I think the Kaiser doc was speaking the truth about the HMO and I can't fault him/her for telling you the truth since most would simply remain silent. Changing insurance isn't always an option, but Kaiser or any HMO is another layer of red tape complicating your plight.

Saying that, I searched Kaiser's CO website for case management services with no luck. Call member services and ask if they offer case management services, you might also want to ask about changing your primary care physician and what you need to do to get a copy of your complete health record including ALL imaging (not just the reports - other docs prefer to see them on film or CD) - ask about any associated fees. This will allow you to have copies to send to future doctors - most will want records and images before an appointment. Dont forget to keep your file updated.

It's interesting how doctors treat you differently once they know you've got a copy of their notes about you.

Beware of neurologists - the ones I've seen seem to specialize in migraine or MS, they haven't believed they are not an expert in brain injury and most importantly....what they write in their notes follows you. The 1st one I saw, while admitting I had clear signs of a head injury, noted that he "thought" I was just suffering from depression and my symptoms would go away once I saw a psychiatrist and got on some "good" medication. Future neurologists wanted to see his notes as did my disability insurance carrier. I can't offer you a good one to see here because I have not found one yet.

Keep a diary of your symptoms, what (if anything) helps alleviate them and how they impact your daily living, intensity 0-10, and % of improvement. Examples: Reading, computer work, driving, cooking, thinking, sleep, hobby, sport, etc. Keep it short and simple then bring with you to each appointment.

Patience is invaluable. The waiting game is frustrating, I won't lie and say otherwise, but you'll read here that it is common. Any doc worth seeing will be booking patients about 3 months out. Ask to be put on the cancellation list so you might get in sooner.

The neuropsych eval is the most useful tool to determine your deficits and needed therapies. They cannot proceed without one. Since your brain changes over time you will need to repeat the testing, don't be surprised. The best I had was in Springfield, MO and was the past president of their state Brain Injury Alliance - he knew brain injury. Look for qualifications, not credentials.

I'd start with CNI over Spaulding. My doc said they have pretty much everything I need under one roof - wish I knew to start there, but I had to eliminate my headaches first to proceed.

If you have hearing or vision issues then you should see an audiologist and opthamologist respectively. I can recommend a hearing center if Kaiser doesn't have one - I believe it's about $200 out of pocket as mine didn't cover the exams. Costco is actually a good option for both tests.

An advocate - friend, family...somebody that can go to appointments with you to take notes, ask questions, and make sure you get the care you require. I often forget to address issues or get frustrated deteriorating into an emotional mess that stutters. So fun. My son takes over...maybe too much, but he has my back and is my voice when I lose mine.

Even 6 years in I'm still on my own journey and still seeking therapies and support like you. My overall experience has not been positive. I found better care in a small town in Missouri than here or in San Antonio. Many docs still are not educated in brain injury and especially PCS. It will fall to you to educate them - you can send them links or bring in printed materials. My GP became more helpful once he read through the materials I gave him - he was open minded though.

When I think of other things I'll send you a private message - or send me one with any specific questions I might be able to answer. I'm not an expert, just working my way through it the best I can.

Links:

Under the "What I wish I knew before I got PCS" heading - I submitted some info including coping techniques that might help.

This is the resource directory at Brain Injury Alliance of CO - here you'll find info for all sorts of things. You might consider contacting one of the attorneys and ask for doctor or therapist referrals since they know the best for tbi/pcs. They also have case management companies. I'd call them and see if they can assist you - https://biacolorado.org/resources/resource-directory/

I probably didn't answer all your questions and I'm sorry I don't have better resources for you, but we're in the same boat. Wishing you a Happy Thanksgiving!

Kris