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Apprentice
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Well in the midst of everything else going on in my life I received a letter from MHNI explaining how I am still reporting severe head and neck pain without benefit from my treatment program. My doctor goes on to say that he's referring me to the University of Michigan Department of Neurology. It states "we have not been able to help reduce your pain by your own admission and we feel it is time to have you move on to another pain center for treatment." It also states that I need to taper off and dicontinue the medications I'm currently taking.

The really funny thing is how the letter starts. It states "after our last encounter at MHNI on 2/24/10 I brought your case to our team meeting (Disability Committee/Work Status Committee) on 3/2/10, which Dr. S**** presides over." When I concluded my appointment with Dr. W he had me on an improved treatment plan and had increased my meds all around. He stated over and over that being that I had just had as a doctor and had not had him before that there were options to try. I did discuss my hesitation to taking 2 potentially dangerous medications due to extreame issues with both medications and told him that I wanted to explore other options before we reached that point.

I had complained about the way that MHNI's Disability Committee/Work Status Committee takes away from the discussion that should be facilitated by the treating physician and the patient and places it into a committee form. It also does not allow for any sharing of information from the patient, beyond what is stated in appointments. It forces the person that is requesting disability to have his treatment run by the committee rather than the treating physician. As you can see I was compliant with my medications and Dr. W and I had just started a new tweak in my treatment plan on 2/24/10 before my treatment at MHNI was terminated.

To complicate things more I don't have a referral to U of M Dept of Neurology and I'm not sure my insurance will pay much if I go there. When I inquired today about requiring help to find a referral I was told that my referral was to U of M and that they (Dr. W) did not know of anyone else. Obviously that is very frustrating considering I'm being discharged from treatment when I was totally compliant and was just having issues with untreatable migraines. If I followed what MHNI wanted in their letter I received today I would be tapering off all drugs and end up in lots of pain until I could find someone to treat me. IMO that doesn't say much about MHNI's commitment to treatment people with this disease....especially the individuals that have been like me and have tried multiple treatment facilities, treatment plans, etc.

I wrote a little ago in a post about some of issues at MHNI but I erased it because I was afraid of any retalliation. I don't think this resulted from that post. What I believe is that MHNI does not want to deal with individuals that are in the situation where disability is warranted. I was told by my psychologist there that the disability committee will not approve any intermittant FMLA requests and that anyone asking for short term disability, long term disability, and SSDI would have to go through multiple procedures and appointments including a work assessment. I completed every appointment, assessment, etc. and have been having my disability approved since I started at MHNI. There has never been any issue that I am unable to work. The fact remains that MHNI does not want to deal with disability issues and people that "lack integrity" when dealing with disablity. My current doctor as well as my psychologist had mentioned several times that I should find another doctor to deal with my disability such as my PCP. When I raised the issue that my PCP no longer treats my migraine condition they just mention again that people with disabilities for migraine, head pain, etc. aren't something that MHNI likes dealing with.

As I said none of the disability issues applies to me since my condition does warrant the disablity and not being able to work. But apparently trying to be more involved in treatment has led to me getting the boot from MHNI.

I have letters and statements that I could continue to quote that backs up what I'm saying but I'm not here to bash MHNI. I'm sure MHNI helps some people. My issue now stands with where do I go from here? MHNI does not seem to be providing any help finding a new doctor to treat my migraines, other than to go to U of M. I feel like after going to MHNI I was at the top of the pyramid and to go somewhere else like a reqular neurologists office would be a waste of time. I also think that MHNI has set me up to end up having many neurologists not want to treat me given that MHNI was unable to help me (per their letter).

Any thoughts on where I should go from here????? I have to see my PCP in order to find some short term solution for my pain control and to continue disability. Where do you guys think I should pursue next? Go out of state? Find a local neuro? Obviously money is a huge factor in whatever decision I make. Any out of state travel would me packing up my 4 year old (we all know what that's like) and my wife taking valuable time off. Thanks everyone Confused
 
Posts: 159 | Registered: 12-05-2007Report This Post
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I have no idea what to advise you to do. In your place, I suppose if I was referred to U of M neurology, that's what I'd try, and then would pick that doctor's brain to try and find out what the list of options were. Even though it seems to be going backwards, you might just happen to land at the kind of doctor you're looking for that's perfect for you. You never know unless you try. Ultimately, though, any decision about what you're going to do is yours alone to make.



Dragondrool
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Posts: 6478 | Location: Montana | Registered: 01-11-2007Report This Post
Apprentice
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I appreciate your response. I'm sure I will find an informed decision to make, it's the only thing I can do right now. I'm not really sure what doctor I'm looking for, other than one that will continue to work with me and my migraines. I guess I would also want a doctor and a physician's practice that won't abandon me.

quote:
Originally posted by dragondroolHOST:
I have no idea what to advise you to do. In your place, I suppose if I was referred to U of M neurology, that's what I'd try, and then would pick that doctor's brain to try and find out what the list of options were. Even though it seems to be going backwards, you might just happen to land at the kind of doctor you're looking for that's perfect for you. You never know unless you try. Ultimately, though, any decision about what you're going to do is yours alone to make.
 
Posts: 159 | Registered: 12-05-2007Report This Post
Apprentice
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Just an update. I received a copy of my medical records and was VERY surprised at what was dictated by Dr. W after Dr. H left MHNI. Statements that were completely untrue, diagnosises that were never mentioned to me. It was strange to see that. I recommend that anyone who is switching to a new doctor or fired from a doctor, to have a look at their medical records.

I found out that even though my medical records state I was compliant with everything but had expressed concerns 2 medications that may have been prescribed in the future,I was supposed to have my treatment plan continued by Dr. W. It appears that a committee decided to end my treatment but never provided any reason other than the letter I received. There are no notes in the medical records, there hasn't been any telephone contacts, or any discussion on what exactly happened.

I also found out that I can't get a written referall to go to another physician and/or practice because MHNI will not provide me with a discharge summary or even just a basic referral for services. They will allow the new organization to contact them but they won't put anything in writing that I may take to a new neurologist or even back to my family physician for her to review. That just doesn't seem right.
 
Posts: 159 | Registered: 12-05-2007Report This Post
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I suggest you request a copy of your records - in writing. Under HIPAA, they must provide you with a copy, and they must do wo within 30 days. See [ Your Rights To Your Medical Records.

[QUOTE]Originally posted by psk2250:
Just an update. I received a copy of my medical records and was VERY surprised at what was dictated by Dr. W after Dr. H left MHNI. Statements that were completely untrue, diagnosises that were never mentioned to me. It was strange to see that. I recommend that anyone who is switching to a new doctor or fired from a doctor, to have a look at their medical records.

I found out that even though my medical records state I was compliant with everything but had expressed concerns 2 medications that may have been prescribed in the future,I was supposed to have my treatment plan continued by Dr. W. It appears that a committee decided to end my treatment but never provided any reason other than the letter I received. There are no notes in the medical records, there hasn't been any telephone contacts, or any discussion on what exactly happened.

I also found out that I can't get a written referall to go to another physician and/or practice because MHNI will not provide me with a discharge summary or even just a basic referral for services. They will allow the new organization to contact them but they won't put anything in writing that I may take to a new neurologist or even back to my family physician for her to review. That just doesn't seem right.[/QUOTE



Teri Robert
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Posts: 4220 | Location: West Virginia | Registered: 01-11-2007Report This Post
Apprentice
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I have found the same problem with medical records from my PCP, ERs and other docs- even MAYO. So it is definitely something one should look into. As I understand it you can send a certified letter requesting that your records be amended, copy that information and the receipt from the certified letter and include the copies with your medical records if you are hand carrying them to the next doctor.

You had Dr H? Was he horrid in your opinion? I couldn't stand the man and didn't feel he was all that interested in me. I didn't cry when I found out he had left so quickly!

be blessed and good luck!
 
Posts: 172 | Location: chicago area | Registered: 04-08-2009Report This Post
Apprentice
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Thank you guys for the response. This has turned into a huge mess and is very upsetting to myself and my wife. Both of us are very depressed about this as you can imagine.

I did request my medical records in writing and have a copy of the form I used. I had requsted all of my medical records including psychology write-ups, test results, and notes. Unfortunately what I was provided was not a complete record and contained gross inaccuracies. When I spoke with Head Nurse she confirmed that there were inaccuracies since she attended my last appointment. Even though she told me there were statements in the most recent record she said Dr. W would only tell her to have me send a letter to him.

There's nothing that shows why was discharged from MHNI and told to "move on to another pain treatment provider." I asked them to provide me with a written referral that at least would indicate what type of neurologist I should find at the University of Michigan and I was told that they will not put a referral in writing and that I was to have any doctor I go to call them for the referral. There something missing in the medical records since Dr. W states that I to come back in 2 months to re-evaluate my medications.

I am just in a total state of shock over all of this. I was never referred to MHNI. I instead chose to go there because I wanted to get better and I wanted aggressive treatment that I wasn't receiving at my old neurologist. I did get good care but when my original doctor left and I received a new one all of this started.

I spoke up with my concerns about Nardil and Lithium becuase of the issues surronding both types of medications, I requested to be allowed to get a new psychologist-preferrably one outside of MHNI so I could see them more often and get some therapy. Then the next thing I know I'm told to move on. I just don't get it.
 
Posts: 159 | Registered: 12-05-2007Report This Post
Apprentice
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Thank you guys for the response. This has turned into a huge mess and is very upsetting to myself and my wife. Both of us are very depressed about this as you can imagine.

I did request my medical records in writing and have a copy of the form I used. I had requsted all of my medical records including psychology write-ups, test results, and notes. Unfortunately what I was provided was not a complete record and contained gross inaccuracies. When I spoke with Head Nurse she confirmed that there were inaccuracies since she attended my last appointment. Even though she told me there were statements in the most recent record she said Dr. W would only tell her to have me send a letter to him.

There's nothing that shows why was discharged from MHNI and told to "move on to another pain treatment provider." I asked them to provide me with a written referral that at least would indicate what type of neurologist I should find at the University of Michigan and I was told that they will not put a referral in writing and that I was to have any doctor I go to call them for the referral. There something missing in the medical records since Dr. W states that I to come back in 2 months to re-evaluate my medications.

I am just in a total state of shock over all of this. I was never referred to MHNI. I instead chose to go there because I wanted to get better and I wanted aggressive treatment that I wasn't receiving at my old neurologist. I did get good care but when my original doctor left and I received a new one all of this started.

I spoke up with my concerns about Nardil and Lithium becuase of the issues surronding both types of medications, I requested to be allowed to get a new psychologist-preferrably one outside of MHNI so I could see them more often and get some therapy. Then the next thing I know I'm told to move on. I just don't get it.

I actually did not have any issues with Dr. H. My wife and I both like him. He wasn't very personable at times but I thought he really had a huge knowledge base and seemed to really want to help.
 
Posts: 159 | Registered: 12-05-2007Report This Post
<Nancy Harris Bonk>
posted
Hi there,

This situation is not good for you, your family or your head. I have a few thoughts if you want to hear them.....

First, not all doctors (clinics) are a great match for everyone. Even the "best" Migraine specialist and patient may not gel together. It is bound to happen on occasion because each patient and doctor (specialist or not) come into the room with their own issues. It isn't anyones fault, it just is. I once saw a neurologist and knew the moment he walked into the room, before he even opened his mouth, he didn't like me. After two visits that was it - no more. Got my records and off I went. Yes, inaccuracies and all. Not his fault, not my fault, but it did stink.

Now having said that, when it was happening it certainly felt crappy. How dare he do that to me? What is wrong with him? Can't he see I am in pain? NO it is not all in my head? And so on.....Then I got another neurologist, and another one....

So, while you are gathering your records, inaccurate as they are, (when you get them, correct them in red-they are yours after all) let's find you a Migraine specialist you can work with. Here's the thing - look for a doctor rather than a clinic. That is the key. Lots of docs at clinics, but you want to find the best Migraine specialist you can. And you yes, you may need to travel. Have you read this few articles Migraine and Headache Treatment - How It Should Be and Migraine and Headache Specialists - What's So Special? If you have just ignore them ok?

Let me know what you think, ok? I have a doctors appointment now, but I'll check in later.
 
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Apprentice
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Thank you, thank you, thank you for your response! My wife and I have been stressed out the MAX about this situation. The idea about the red ink on my copy of the medical records is spot on. I really like that idea. Right now it's just trying to cope with the stress and not go into a state of depression.

I also totally understand how people don't often work with each other no matter what the relationship. My whole relationship with MHNI went right down the tubes when the doctor I started with there (Dr. H) left in November. MHNI pulling the plug on me because they "ran on out of options" just seems like a really lame excuse when I had been following their treatment plans exactly. While I can't prove this becuase I can't get the "Work Committee/Disablity Committee" notes at this time, I do think I was let go from treatment from MHNI because my disability insurance company had requested a review. MHNI seems to have a real issue with people with migraines being on disability. I lost track of the times that a staff memember (mainly my psychologist) would tell me that MHNI does not like granting disability or even FMLA for that matter.

In my case I had been granted long term disability and I am currently in the process of the SSA review. Perfect timing to have your doctor abandon you!

Right now I'm just trying to pick up the pieces and talk with our PCP. From there it will be off to try and find another neurologist that specializes in headaches/migraines. I'm extreamly lucky because there are few besides MHNI in my area that are listed with American Headache Society. FYI- the listing for Todd Rozen under doctor listings for Michigan is wrong. He left MHNI and I think he's in PA.
 
Posts: 159 | Registered: 12-05-2007Report This Post
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