Michigan Head Pain and Neurological Institute / Chelsea Inpatient Program
At the end of the week I begin the next steps in the quest to better control chronic migraine. I am hopeful that this will result in the improvement that I so desperately need.
Today I go, at my local hospital, to get an updated MRI of the head as well as an MRI of the neck. These are required prior to admission into the inpatient program. With the images from these studies in-hand I head down to Ann Arbor on Friday for an outpatient visit with my former neurologist (also a prerequisite for the inpatient program). The final piece, clinically, that I must satisfy is an outpatient visit with one of the psychologists at MHNI.
The tentative plan is to enter the inpatient program this Sunday, after my outpatient visit (they do not admit on Friday's). If there is any issue with my insurance the admission may be Monday of next week.
This means that I will have Friday afternoon, Saturday all day and possibly Sunday all day in Ann Arbor. From my home to Ann Arbor is approximately a four hour drive. I have decided to stay in Ann Arbor after my outpatient visit until the time of my admission. To drive four hours there, four hours back and four hours back down just seems like too much driving.
So, I will be in Ann Arbor for the weekend, with part of that hopefully spent being admitted into the program.
Lots of stuff is running through my head as things move forward. Of course, front and center is the sincere hope that Dr. Saper and his team can find effective treatments that both better manage my migraines while in the hospital as well as post-hospitalization! A close second has been concern over time away from work. The amount of paid time off (PTO) I have available is quite low, because of time off due to migraine. I just have not been able to build up a bank of PTO. As I look at the 5 to 7 day inptaient program I am definitely concerned about PTO. I cannot really afford to take unpaid time off from work. My employer, thankfully, seems to be willing to work with me to overcome this potential issue!
Another competing message is the idea that by going into such a program I have somehow lost to the migraines, or that I have lost control (which I never had to begin with). My raional mind knows this is simply "garbage", yet it keeps popping back up in my thoughts. It seems I am having a bit of push-back as I process the new idea that I cannot effectively manage the migraines, work, family... life! The right answer is to pursue treatment that might be effective. The garbage answer is that I am stepping onto a muddy hill on which I might just slide "down farther". Again, I know how silly such thoughts sound even as they continue to move through my awareness.
My intention is to write about my experience in Dr. Saper's inpatient program. I want to share my experience so that others can get a glimpse into the program.
In the interim, this week, I am working on a list of questions, ideas, possible treatments, etc. that I can discuss with Dr. Saper and the team.
This is an exciting step that I hope will result in some much needed relief and more effective relief from the curse of chronic migraine!!!
Stay tuned!!!
Chris - This isn't you losing to your Migraine, this is you taking the proverbial tiger by the tail and fighting back! May of us as patients tend to feel victimized... that this happened to us, that our lives have been taken away from us. It's rare that we get an opportunity to fight back in such a tangible way.
I am wishing you all the luck in my heart that this will lead to better things for you. Remember it's a process though. You didn't get this way overnight, so don't expect to get better overnight either. But to find another step to take forward in a positive direction is - for me - the very definition of SUCCESS over the beastie!!
~Ellen
An update...
Well, I have reached my last day at work for the week. This afternoon I drive to Chelsea Michigan, as soon I finish in the office. My outpatient appointments with my "old" neurologist and the psychologist at MHNI are tomorrow at 8a and 2p. With those two appointments I have the three prerequisites for inptatient admission new MRIs of brain & neck and outpatient visits with neuro and psych. If things go as planned I will enter the inpatient program on Sunday.
As I get moving into my work day I am simply not "here" mentally. I keep drifting to thoughts of what is to come. I am keeping my hope at a minimal and guarded level. I have, in the past, been completely enthusiastic and hopeful about new treatments. When those treatments fail or are less than successful I always seem to fall into a dark hole. With this next step, this inpatient program, I do not want to fall into that same dark hole. So, if things turn out well I will be SUPER excited! If things do not turn out so well I will not fall because I did not set myself up. This might seem a bit dark, but it is a coping mechanism (maybe not the best one).
I am also actively researching neurostimulator implants as a backup plan. It helps me to have at least two things on my list and this is my second. I am early on in the process of thorough research. Of course the clinics/physicians that perform these procedures have wonderful, glowing things to say about it. I am, however, not swayed by their perspective. I need to look for more information and do more digging into the data. I am also searching for something closer to my home (Michigan) than Houston Texas. I know there are at least a few clinics around the country that work with these stimulators and I would like to find something closer. I am definitely looking for the occipital/supraorbital combination. My research will continue as I move into and through the inpatient program.
Between the inpatient program and the research on neurostimulators I have some positive points on which to focus. This alone is helpful.
Update: I had my outpatient visit on Friday. Everything seemed to go well. I was told that the team had to prepare some material/documentation and submit to my insurance carrier, BlueCross, for approval. I was not given any indication that there were expected issues. Admission either Sunday or Monday.
Monday I am told that I have been denied by insurance. Now the physician is presenting an outpatient 4 day IV infusion program as an option. I would go for IV infusion 8 hours a day for four consecutive days. I would need someone to drive me and stay with me in the evening/night hours at the hotel to make sure I have no significant reactions to the meds.
So, I stay in a hotel over this past weekend, which adds up quickly and now I not only have to do that again, but my wife has to take a week off of work to be my designated driver and monitor.
I wish that the team down there had, as I would think they know the critiera from the insurance payers, mentioned this possibility to me on Friday so I could simply go home (4 hour drive for me).
Finding out "at the last minute" yesterday was extremely frustrating. They had all my information. They knew all the answers to the clinical questions. Couldn't someone have seen this denial coming?
Poorly managed expectations. I was told I was going inpatient. This was always the plan with absolutley no mention of anything else until Monday mid-day.
At this point I am glad to have a plan but am still hugely disappointed, angry and frustrated.
Chris, I'm so sorry. At least they told you. I had a circumstance where we were *ahem* misled and told a surgical procedure was covered, lock stock and barrel, only to receive a bill for many thousands later. We were told the hospital was covered, but not the doctors.
I know it hurts to have been treated this way, but be thankful you didn't have to foot that bill.
We have unfortunately learned how to play the game. The game means that we never believe what we're told as we've caught them in too many lies errrrr mistakes. We speak with a manager to be sure until we know how to roll with whatever the procedure is. We call ahead of time and then call a day or two ahead to be sure we're still all go. If things haven't been okayed by that point, then we ask that they be approved before we leave. So far we've not had issues with staff not wanting to be helpful. In our experience, it is usually the insurance company playing games with us.
Hang in there...
