i am hoping someone has had experience with this highly reputable hospital in Denver that specializes in Spinal Cord Injury and Traumatic Brain Injury...

although they do not mention mTBI on their site (but i could not get thru the whole thing, just way too much info for me) they did mention programs for PCS...

and the list of expertise in providing a comprehensive program complete with all the necessary testing, therapies, and follow up sounds like just what i need...

it looks perfect and i have no idea why i was not there months ago...

http://www.craighospital.org/

i have left a message for their outpatient program director, and i refuse to leave the phone in case they return the call...

does anyone have any experience with them?

Brainstemmed

Your case is so unique that the experience of others at Craig will have little validity to your case. I would be surprised if you find better care and diagnostics unless these is an obvious symptom that is repeatable in front of the diagnostician.

Hi Brainstemmed,

I'm sorry, but I take issue with Mark's comment. It's laden with pessimism that I totally get, but isn't encouraging or helpful for your situation. We need to know places to avoid, if nothing else, and personal experience of other's is enlightening in our decision making process - iit need not be case specific. My 6 years of mtbi/pcs experience (many of them horrendous btw) mainly in the Denver/Boulder area insists that looking to others experience of a doctor or institute to know if they really get tbi and/or pcs (not just think they do - rampant arrogance is a common affliction) is not only time/cost saving, but invaluable regarding frustration levels. I hope my experience can be of service.

I do have experience with Craig's outpatient director AND have links to other options for you - because my experience was NOT as positive as I had hoped.

Since I moved close to Craig last year I contacted the outpatient program director via email - since talking is a chore - inquiring about their outpatient services and application process. The reply was not prompt and her news a bit disheartening as she said the outpatient program and other offered services are mainly for their inpatient "clients" extended recovery. Your injury is much more recent than mine which might benefit you. I just celebrated my 6th year post injury - big difference. I've heard from other's personal experience that Craig is worthy of the high praise (each were inpatients - one had an open head tbi, another a spinal cord injury).

However, after explaining I've fallen through the medical cracks of MTBI/PCS and had horrible experiences with neurologists she did recommend a physiatrist (Dr. Reinhard, 3rd from bottom - http://coloradorehabilitation.com/physicians.html). I've worked with him now for 6 months and have not been disappointed - which is saying something.

Visiting my doc (I see him in Littleton, but also practices out of his office near Spaulding Rehab hospital in Aurora - which also has therapy for mtbi) last week I asked about group therapy (would love to talk to others in person! ) and he said unfortunately there is a deficit in Metro Denver for those living with MTBI/PCS post-injury and progressed to discussing Craig.

Considering I was referred to him by Craig he was rather candid in his experience and observation of the institution. Reminding him of their referral to him he nodded thoughtfully saying "it's a real shame they don't reach out to a broader tbi community that could really use their level of expertise. Sadly, they're a bit elitist and selective usually only taking severely injured patients, but not others that suffer as much, if not more, from seemingly insignificant injuries like yours that project into the future. I will say what they do, they do well. They follow their patients all the way through even to resident housing helping them learn how to live alone again. They do have group therapy, but only for their own patients."

I certainly don't want to discourage you because your injury is so much newer than mine and if accepted - I'll share your joy. If they do not accept you, ask for doctor and therapist referrals. Many of their doctors only work out of Craig and cannot be seen outside of their setting - I asked. Take heart if they cannot accept you into their program, below are links to referrals Dr. Reinhard gave me:

Colorado Neurological Institute (CNI) - They are supposed to have a whole compliment of treatment/therapies and is near Craig - http://www.thecni.org/

Spaulding Rehab - TBI specific link -

Brain Injury Alliance of Colorado, Brain Injury Program - I was accepted into this program in 2010, but moved out of state before I could take advantage of their services, which are extensive. http://biacolorado.org/support/cbip/

I wish you LUCK and send please message me if you have further questions. I'd love to know how things work out with Craig so please update when you hear from them! (My fingers are crossed!)

Kris

Kris:

that info is VERY helpful, thank you so much...

i had the same experience with Craig, they told me to go somewhere else...it took 3 days for her to call me back to tell me that...

i am trying to get referred to Spalding, but Kaiser has me blocked for now...

i started calling Spalding on Thursday...no call back...i called today to find out they want Kaiser to refer me...

i have an OD that will refer and write a Rx for vision therapy only...but no other therapy

i need to go to my Neurologist outside of Kaiser for the referral for other therapies...he works only 3 days a week...most likely not at all this week...

Neuro at Kaiser is out all week for the Thanksgiving holiday...

can you tell me where to go to get some additional evaluation done?

i tried calling the doc you go to, but they need to see the paperwork as well, which all takes TIME and i feel like i am stuck in a bad dream with no one listening that i need some help ASAP...

Kaiser refuses, or least is incapable, of doing any testing...hell i don't even know what to test and how to show this is real to anyone that wants to listen...Neuropsychological test is scheduled for FEBRUARY...

i asked my Primary Care for a referral this morning via e-mail...this same guy has been the worst of them all...telling me Kaiser cannot help me, and i might as well get some other insurance and leave Kaiser...if i recorded the conversation, he would be fired...i hope...but it is the Kaiser way...of course, i am ANGRY and i got ****** at him that day and stormed out of his office and shouted to him and to all listening...'what the @#$#% is wrong with all you?' so a referral from him is a long shot...

i dunno what other testing can be done to show the what abilities i have lost and what i am still capable of...

i live like a hermit because leaving my controlled environment is devastating to me...serious problems with motion, light and sound sensitivities and a long list of other stuff...nausea, anger, tinnitus, speech, hearing. cognitive function...i don't think i can remember them all...

i am so frustrated i can hardly see straight...

help seems so far away...no one seems to listen...no one seems to care...no one seems to know who to go to first, second third...

Kris, is there any way you can help me get started in finding someone...ANYONE...that will get me headed in the right direction?

i am miserable 6 1/2 months into this...

any suggestions will be followed up on immediately...i called the doc you go to within 5 minutes to see what they can do, and they may be helpful, but no appointment until i get them proof i am injured...

well, i need proof to go back to Kaiser to tell them how much they suck at this and how wring they are...

who can test and show this and then get approval so i can move on to therapies???

help!

Brainstemmed

brainstemmed,

I have a Kaiser question for you. Have you seen the file folder they put in the door pouch when you have a clinic visit ? I bet yours is a thick file. This makes it very difficult to get care at Kaiser. We become known as 'thick file' patients. They discount our complaints.

I was a thick file Kaiser patient before I left Kaiser. I was not sick. I work hard and tend to bust up my body. Patient services needs to be contacted. I knew the director of patient services and she tried to get me to appropriate doctors. The 'good doctor' saw the thick file and labeled me somatoform.

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

Kris:

your insight has been very helpful to me...thank you very much!

no worries with Kaiser, i am almost completely done with them...i have Physical Therapy scheduled for the next month, then they have cancelled our policy and i say "good riddance"...

and yes, i have found out that neurologists are not well equipped to handle these cases...for the most part i guess...only one of three have been helpful, and he has been around for 50 years, but his specialty is pain...the ones at Kaiser are worthless...and almost scary with their arrogance and ignorance...

and yes, i keep a daily log, it has been very helpful when i look back on what has happened...

so here is the GOOD NEWS: on Monday, i have an appointment with Dr. David Reinhard, whom you suggested i go see...i got in fast and here is how:

i needed a referral from my Ophthalmologist and they did that for me, then i asked that they call and make the appointment for me...when docs call other docs, they get results...ALWAYS...new patients were being scheduled in January...so that worked out awesome...

i have neuropysch scheduled at National Jewish in February, but i sure hope i can get one done somewhere else sooner...

i also meet with my Ophthalmologist on Monday and i will pick his brain, he is VERY good...he does treatments at Craig and Spalding so he knows other good docs to see i think...i want his rolodex!

after 7 months of searching, i think i am on the right track...

your help has been very valuable...thank you very much!