Full Review and Details of WRIISC

[DocC03]

Moderators please move this to where it should be if its in the wrong place.

I just got back from the War Related Illness and Injury Study Center (WRIISC) in Palo Alto Ca. I am planning on giving everyone a full review and outline of what happens there from a patient standpoint. While this outline is specific to Palo Alto I am fairly confident that the locations in New Jersey and DC are roughly the same. When I was setup to go down there I tried in vain to find much information on the program and I told myself I would provide a detailed account of how things go when I got done. This will probably be a pretty long account of the program so it might cover a few posts here. And if you have any question please feel free to ask I will do my best to answer them.

Criteria for acceptance into the WRIISC

Your VA Primary Care Provider (PCP), Patient Aligned Care Team (PACT), post-deployment health champion, or Environmental health provider may request an Inter facility consult for Veterans with possible deployment-related health conditions who have:

• complex health conditions and no known cause (medically unexplained symptoms-MUS)
• had many tests and/or treatment with appropriate follow-up and with little to no symptom improvement
• possible deployment-related environmental exposures problems or concerns

Referral Process

Referrals to the WRIISC program may be made by the Veteran’s VA Primary Care Provider (PCP), Patient Aligned Care Team (PACT), post-deployment health champion, or Environmental health provider and are done using the Inter Facility Consult (IFC) process in Computerized Patient Record System (CPRS). Click here for detailed instructions.

VA Providers: Referrals are triaged to the appropriate regional WRIISC based on VISN location:

• CA WRIISC: VISNs 18, 19, 20, 21, 22
• DC WRIISC: VISNs 5, 6, 7, 8, 9, 16, 17
• NJ WRIISC: VISNs 1, 2, 3, 4, 10, 11, 12, 15, 23

 

[DocC03]

After my Doctor submitting the request to WRIISC I called the nurse directly in order to make sure she knew how important it was. A side note is I had to take the direction for a referral to my doctor in order for him to understand. He had never heard of the WRIISC.

Let me tell you from the start that these people that run this program are NOT LIKE anything you have probably experienced in the V.A. system if your V.A. is anything like mine. The program has 2 nurses. Both of them are soooo nice. You can truly tell that they enjoy there job. When I called the first time I was nice to the nurse and I asked her what I could do to secure a spot. She told me that since I was so nice to her that she would push to get me in the program. This is one of those times that being nice really helps. 

The Palo Alto V.A. is unlike any V.A. that I have ever been to. It is large. About 5000 employees. Constant construction going on. You can tell the the Palo Alto V.A. is somebody important's baby. There is so much money there. There are multiple large buildings. 

Once you are accepted to this program the WRIISC nurse will send all the info to travel to secure a plane ticket for you. If you are on the caregiver program then they will also secure a ticket for your caregiver. The best way to go is with a caregiver and I will get to why in a minute. The tickets for air travel will come about a week or so before you are suppose to be there. Its a little stressful waiting on them since you do not have your flight schedule it is hard to plan rides and everything else to the airport. Also you have the option of driving. Just know that if you fly, more then likely, you will leave your house on Sunday morning to fly there and you will fly home Friday evening/afternoon.

Once you get your flight information you will need to call the "taxi" company that they have assigned to you, call them 24 hours to when they are supposed to pick you up and give them YOUR phone number and confirm the pick up. More then likely it will be ACE taxi. I use the word taxi loosely. They show in large cars with no markings, cars like a lincoln towncar and such. My wife said she felt like the CIA was coming to get us. The women that drive the cars are nice, very nice. 

You will be sleeping in the Defenders lodge. You can see a video online. Just google defenders lodge in palo alto. It is on the V.A. campus and probably about a 7-8 minute walk and slow to medium pace. There are also bus's and golf carts if you don't want to walk. If you come alone you will be sharing a room with a stranger. This is the reason I feel its important to come with your caregiver if you have the option. Your roomate will change every day probably. The defenders lodge would probably be a 4 star rated if it was a hotel. Its nice. There is a tv in each room. A nice bathroom. NO FRIDGE, and NO KITCHEN in the room. There is a kitchen and fridge downstairs in the common area. You can use the kitchen and fridge as you please. Just remember that if you struggle with PTSD you may have trouble with sleeping 8' away from a stranger. For the most part they are other veterans, which helps, but usually they have medical problems like ourselves so the combination of PTSD and medical problems might make sleeping difficult. The beds are absolutely horrible. In our case there was bandaids stuck on the sheets, the pillow were the rubber coated pillows, and the mattresses were really uncomfortable. This is important to know that sleeping will be very difficult for at least some people. I will explain later why you HAVE to figure out a way to get a good nights sleep. Noone cleans the rooms during the week that you are there so it will be a good idea to try to keep your room as clean as you can yourself. I was paranoid thinking that I was going to be under surveillance the whole time there and like always I was very aware of my surroundings. I can tell you that I never noticed anyone watching me. 

When you get there make sure you get the map from the front desk with all the building on it. It will help more then you know. Food was difficult for us. We were told that breakfast and dinner would be provided for the veteran but not the caregiver. The first couple days we could not figure out the food situation. For your reference it comes roughly 0700 and 1730 in the kitchen area in the defenders lodge. Lunch we would eat at the cafeteria which was actually really good. The first night that I ate at the defenders lodge I noticed the food was the wrong temp and I got very sick within 30 minutes of eating. I was up until almost minute in the bathroom. After that night we decided to get our food from the cafeteria for all our meals since my wife had to go there anyway to get her food since it was not provided for her. The cafeteria shuts mostly down at 1500hrs so you have to get dinner before that and take it to the lodge for later. There is one place in the cafeteria that stay open till 1600hrs with a very limited selection if you care to eat dinner early. 

[DocC03]

So we have covered the lodging, food, and travel part. Now lets get into the appointments.

Let me start by saying that the all of the doctors, nurses, and staff were very friendly. They are almost all Stanford professors that also work for the V.A. They seem to care about you. They have their own agenda and if you are perceptive it will become apparent what each persons agenda is pretty quick. Most of the doctors if not all are running study's so they will be focusing on their study's while you are visiting with them. I am not saying its a bad thing. Just know that if you are talking to a mental health person that it is in relation to a neuropsychological test you will be given. If you are talking to a nurse then more then likely they are thinking about trying to get you into one of the other study's they have going on. Medical doctor will be focusing on toxins and environmental stuff. Just keep it in mind, pay attention to their title, and you will figure out real quick what they are getting at. Most appointments are 1-3 hours long. And I dont mean 1-3 hours of waiting, you will literally spend that time with each doctor. 

The specialties you will most likely see are: Neurology, NeuroPsychological, Environmental, Chaplain, Pain clinic, Yoga, aquatics, Social Work, Computer testing, MRI. I think I covered all of them. Ill break each one down in future posts. 

We were told that ALL Appointments are optional even though they have been scheduled. I truly believe that you don't have to go to certain ones if you don't feel comfortable. I will break down the testing that would skip in future posts if I were to be able to do it all over again. 

The only testing that is done is MRI on the brain. It is done with a 3 Tesla machine so it is VERY detailed. NeuroPsych testng and if anything jumps out at them that a blood test might show then they might order a blood test but that is about it for testing. 

[DocC03]

Neurologyx2: There is a basic neurology appointment which is pretty much just a few questions. Nothing really gets accomplished in it. This one is maybe 1 hour. No tests are done. No physical exams. Nothing. 

The second neurology appt is more detailed and with a different person. This will include physical testing. You know the normal neurological exam. Push this, pull that, touch your tongue to your nose and such. The appt should start out with about 30 minutes of questions. Just getting to know you. Just know that every appt mostly you will tell your story about military service, personal life, which hand you use, how many bowl movements you have a day....okay a little exaggeration, but you get the idea. You will probably get tired of telling your story by the second day.

Both of the neuro docs that do the physical exams are stanford professors. There names are very similar. Pay attention to which doc you are supposed to see. I got the wrong doc but we just ran with it.

This is a very critical appointment and I would go to it no matter what. Be honest. Bring a list of what is wrong. And make sure that you ask all the questions. Don't worry about time. They will go over the scheduled time to answer everything. Most of the docs you will see this week do not normally see patients the same day as you except maybe pain clinic. There will only be maybe 2 patients in the program each week. Maybe 3. But that's about it.

 

 

 

[DocC03]

NeuroPsychological and computer testing: This one really irritated me. This is where the good nights sleep really comes in. Just know that I had a bad experience with this appointment so I may be a bit biased. 

If you have never had this type of testing done then you are in for a treat. In my case I got a doctor who was very nice but that's where the good part stopped for me. 

This type of testing is commonly used by insurance companies to deny claims with civilians. The results can be interpreted any way the tester would like. These tests are things like draw pictures, remember numbers, words, pictures and such. The doctor will spend about 2 hours asking you about your military and personal history. They will come up with an IQ based on nothing more then your schooling and how many words you can read off of a list???? Figure that one out. 

You will be in the room for about 3.5 hours roughly. You will probably miss lunch because of it. You will be so mentally exhausted that you will just want to sleep. The testing is just crazy. They will tell you to remember words. You will probably think okay maybe there will be 5 words and then they just keep going till about 15 words. Then they ask for what you remember. Then 15 minutes later they will ask you again what you remembered. If you are anything like me you wont remember much. 

They will have you copy a complicated picture. My hand has tremors and my handwriting sucks bad. I drew the picture pretty good. You could clearly tell all the items were there. The sloppiness was nothing to do with mental stuff. Just my tremors caused it to be sloppy. I got almost no points because it was not neat???!?!?! 

You have to count dots. I was pretty confident that it was a test designed to see if you put in much effort. I assumed that because almost anybody in any condition except maybe alzheimers should be able to count dots pretty easy. I flew through it pretty fast. Did not stumble at all but yet I failed that test?!?!?!?

About half way through the tests the demeanor of the doctor changed and you could tell he was frustrated. I am certain he decided at that point that the results did not matter. 

I truly put in all the effort I had. I did not pretend to not know something. Or intentionally try to sway the tests in any way. I did not know about these tests before hand so I did some research to see what I was getting into and the most common thing I read before the tests that there is no way to sway the tests at all so just be honest and do the best you can. And also that the tests can be interpreted any way they tester wants so they are not a true picture of what is going on. 

After everything was said and done the results showed that my scores were in line with Alzheimers. Except that I don't have Alzheimers. The doc decided that I put in "Suspect Effort" AKA faking memory issues. He did not write that I was faking it but might as well of the way it was implied. In all fairness he said in the report that severe PTSD might be causing issues.

I did the best I could. I was incredibly tired from the lack of sleep, had not ate in a long time because we went past lunch, felt like crap, and had a horrible headache but even if it was a day that I felt pretty good I don't think I would of done much better. I do have some mild memory issues but nothing that should be too obvious on tests. Especially to this level. While I am admitting that I was not on my A game I don't think that caused the issues. I actually thought I did pretty good. I got a little frustrated because of the lack of instructions but I can say that without a doubt the bad results were from a lack of instructions and a preconceived idea of the doctor so he graded the tests a certain way. 

I consider these tests to be a waste of time. Maybe your experience will be different but if I had the chance to do these tests over I would not!!!!!! I WILL NEVER take one of these tests again unless they are done by someone outside the V.A. 

I don't see how a test result like mine could hurt a vet as far as rating if they are not claiming memory problems. But I don't appreciate being called a liar. 

To end on a positive note. I always thought that I had memory problems and these tests showed me that my problems were more because I was not hearing the information. Not from hearing problems but because my mind wanders so much that I can't pay attention for that long. So I did get something useful out of it.

 

Edited January 31, 2016 by DocC03

[DocC03]

Environmental: This appointment is crucial. This is the doctor that you will see to review exposures. In the case of Palo Alto you will see a Colonel in the California Guard. She is awesome. But there is a language barrier kind of. Not so much with the words but she does not quite understand life outside a city. She is from Israel. She cares a lot about vets and will make it clear that she does. 

You will only spend about 1 hour with her. And she will ask you everything under the sun about exposures in military and civilian life. She wants a detailed timeline of all work you did before during and after the military. 

This is one appt that an agenda will be obvious. Seems to be a common theme that people that see her are diagnosed with Gulf War Illness. Not Chronic Fatigue or Fibromyalgia or unexplained medical illness but in my file it now says I have Gulf War Illness. 

She had already diagnosed me with GWI before seeing me. She had me come sit close to her and I was reading her screen as we talked and she already had it in my records. Not that this is a bad thing but just know going in that if your illness looks like GWI then you will probably be diagnosed with it. She did no exams or tests or anything. 

I would absolutely go to this appt again. It is crucial if not for anything more then confirmation of what you probably already know about yourself and to have it documented by a highly regarded doctor of the field. 

I have talked to a few people that have seen her and all of them have been diagnosed with GWI. I not saying that is always true but just keep this in mind.