Worried about upcoming NS visit

I know I haven't been on in awhile ... I've been dealing with life and have had to put Chiari on the back burner for awhile now with work and the death of 2 of my grandparents, plus the kids and and searching for a new PCP ...

However, I received a letter in the mail stating that worker's comp had set up an appt with a neurosurgeon for an Independent Medical Evaluation. The NS is Dr. William T. Monacci who, from everything that I can gather on the Internet, is one of the NS on the list of Chiari Specialists (for the US Military) but seems to be based in PA although he does have a license to practice in WI.

While half of me is excited with this information, the other half of me is totally nervous as in my opinion, all these IMEs really want to do is discredit you so that WC doesn't have to pay anything. I haven't used WC for anything except my initial urgent care visit. All of my follow-up care regarding the Chiari and concussion have been taken care of by my insurance.

My question (after this long back story) is how can I get this NS to look at the overall picture instead of just trying to figure out if my claim (which work made me do in the first place) is faulty? I'm pretty sure that he will be looking for all sorts of dumb stuff and this will just be a waste of my time and his.

I have had noticeable symptoms of Chiari since 2003 which coincided with my 3rd pregnancy. Ever since I gave birth to her, my overall quality of life has been on a gradual decline without me really paying attention because I could usually just toss it off on something else. Now, because of the concussion, I am aware of the reasons for the gradual decline and after the concussion came an onset of a number of new symptoms as well as some of the old ones getting worse. I don't blame work for this as it was something I was born with. Just the extra symptoms are starting to get to me.

How do I talk with this NS without feeling like an idiot and without him treating me like there is nothing wrong with me just to appease the WC people?

ALL of my Chiari/Syringomyelia symptoms started after a car accident in July 2007. I felt great and was in NO pain prior to this accident. So, in my case, trauma brought on my CM and SM pain/symptoms. In your case, the work injury may not have started your problems, but it did make it worse. Workers Comp should be responsible for the worsening of your condition. Do you have a lawyer? My doctor actually went out and found me a lawyer. At this point, I had already been suffering for over a year since my accident. I had never thought about getting a lawyer…I assumed my doctors were right and I’d be better within a couple years. I am so glad he found me a lawyer! I received notice of my IME appt shortly after I met with my lawyer for the first time. He told me that someone, preferably a nurse, needed to go with me to take notes during my IME. He actually hired a nurse to go with me. I hadn’t been diagnosed with Chiari or Syringomyelia yet. They based the exam on my multiple herniated discs. I don’t know how the exam would have been different had we known about the Chiari and Syringomyelia. Please don’t worry too much, but do bring someone with you. You have a legitimate injury…So, just be yourself and be honest with the doctor. My IME showed that I had legitimate and extensive injuries. The doctor wasn’t very nice, but at least he seemed to be fair. I’m sure he examines a lot of people that are either faking or exagerating their injuries…Sadly, this does happen. The IME isn’t a pleasant experience, but I do understand why it’s necessary. I know this is easier said than done, but don’t take it personal if it feels like he’s interogating you. I hope this helps:) Good luck!

Thanks for your replies :) They have helped me to re-focus. I am working on getting someone to go along to the appointment with me. And I have still been taking notes on symptoms that I have been experiencing both before and after the concussion and will be bringing those along with me to the appointment as well.

That's a great idea. They can use that. If they don't talk to you about further testing make sure to bring it up because CM and related issues affect the autonomic-nervous-system (the stuff you don't consciously have control over). This is called getting "objective" evidence rather than a list of your symptoms which would be referred to as "subjective" evidence. For example, I had a dyshpagia test (barium swallow test), and although I knew I had issues with swallowing and things going down the wrong way when drinking and eating, I was very surprised when the results came back positive (meaning - I did have problems swallowing)... and that, in addition to my MRI findings, were enough for everyone to give the go-ahead on surgery! It's unbelievable that it took this long to sort such a simple concept out but thank God it finally happened. Your NS should be totally into this so I hope your appointment goes well<3

I know that it's been a little while since I have been on. Life continues to get in the way .... However, I wanted to update those who may have been wondering how this appt went. It was definitely different than other appts I have had.

First off, my worker's comp DID send me to get the eval from a Chiari Specialist (one who is on the list), Dr. Monacci. It wasn't a regular appointment, just an evaluation of my issues, both pre- and post-concussion. We went through most everything that has been going on, including that I now have to take breaks during the day to lay down for a little bit to relieve the pressure that seems to build up when sitting/standing too long.

Also, he had me do more balance tests, ones that I hadn't done before, which didn't seem to come out too well as I was falling over a lot.

But I think that the best part out of the whole evaluation is that he had asked me what my doctors were doing for me. I told him that other than the nortriptyline, nasal steroids and migraine meds (because I supposedly have tension, stress, and sinus migraines) plus the fact that they think that I am in serious need of a psychiatrist because i have issues with lots of crying. When I told him this, he was like "they didn't think that it might be related to the headaches at all?" And he laughed at my doctors ... :) He also seemed concerned that I hadn't had a CINE done either. And when I explained that although Dr. Heffez confirmed the Chiari, my NL told me that my herniation was small (1-2mm according to the MRI report because he doesn't seem look at the actual scans himself) so it wasn't Chiari, and that size herniation could be found in anyone (even himself), Dr. Monacci just shook his head and almost seemed baffled.

I will be able to get a copy of his report in another week or two and then figure out what's going on and know if WC will cover the trips to see Dr. H, or if I need to figure out what to do from there.

So glad to hear that your appointment went well and that you were taken seriously! I have two upcoming appointments and I feel like I'm at the point that if even one involves a doctor listening and taking me seriously I might faint with shock! lol.

Sorry to hear of your recent loss! Keep us posted on your follow-up report!