Inpatient Headache Units and your experience?

 

I have been denied by my insurance REPEATEDLY (even after physicians written request) and I am curious about your experience(s) with the following inpatient headache units. When did you go, what year? What doctor did you see? what happened during your stay? How long were you admitted?

ILLINOIS

Chicago Seymour Diamond, MD Director Diamond Headache Clinic 467 Deming Place Chicago, IL 60614 1-800-HEADACHE Columbus Hospital Inpatient Headache Unit www.diamondheadache.com

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MICHIGAN

Ann Arbor Joel Saper, MD Director Michigan Head Pain & Neurological Clinic 3120 Professional Drive Ann Arbor, MI 48118 734-677-6000 Chelsea Hospital Inpatient Headache Unit www.mhni.com

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PENNSYLVANIA

Philadelphia Stephen Silberstein, MD Director Jefferson Headache Center 111 S. 11th St. #8130 Philadelphia, PA 19107 215-955-2243 Thomas Jefferson University Hospital Inpatient Headache Unit www.tju.edu

(list copies from www.headaches.org, National Headache Foundation)

Thanks Krista!!! So your inpatient treatment "They had put me on a DHE45 IV treatment during my stay. My pain was also treated with toradol. My nausea with zofran." would not have done anything for me as I have been on the same course during an ER visit.

Do you mind to tell me a little bit about your plan that they sent you home with?! Im just curious for those of us who have not been inpatient at all. (basically, are we missing out on anything that our own doctors haven't tried!?)

Thank you, I really do appreciate it!

Sara,

I've had some similar problems with my insurance before each one of the three planned hospitalizations that I've done at Jefferson in the last three years (every summer). Their protocol for initial admission involves scheduling a date to come in and (ideally) receiving a phone call the night before your admission telling you when to come in (depending on room availability, etc). Every time that I've had a hospitalization I've ended up having to wait through most of the morning of my admission date at home as the headache center and hospital staff work hard to get approval from my insurance company. It can be a nerve wracking process, being already anxious about the hospitalization and then waiting in limbo for insurance approval.

Despite these problems, each time I did eventually get authorization and went through with my stay. Many people criticize the front office staff of the Jefferson Headache Center as being somewhat rude (they'll keep you waiting at the checkout counter without acknowledgment while they finish up whatever they're doing in some cases, for example) but I've seen one or more of them spend (literally) hours on the phone with my insurance company, talking to many people, getting high-up supervisors to talk with them and the doctors and eventually always getting the approval. I know that some insurance companies just won't budge but if anyone can make them do so, these ladies can.

Regarding the specific hospitalizations:

1) In August 2006 I spend a little over two weeks at the hospital on their special inpatient headache treatment floor (reserved for headache center patients). One of the goals of the hospitalization was to detox from the methadone I had been taking as a painkiller which they wanted me to stop taking until they had tried other avenues of treatment. That process mostly involved a slow tapering of the drug, lots of IV fluids and some anxiolytics. The main purpose was to treat my intractable headaches. Their stated goal was to achieve one whole painfree day prior to discharge and they were willing to keep me there until they achieved that. Of course, they often have to accept significant improvement if they can't totally rid you of pain and they will if they've done everything they can. I was treated with a wide variety of medications, from Toradol and other anti-inflammatory drugs to DHE to many neuroepileptics such as Thorazine, Haloperidol, Droperidol and others. They frequently administer Benedryl in conjunction with these IV treatments to help with the side effects of the medications and induce sedation. Of course I had several drugs available for nausea including Phenergan and Zofran and others for anxiety and other neurological side effects such as clonazepam.

During a headache hospitalization at Jeff you'll typically see a neurology resident in the morning and your headache center neurologist in the late afternoon after the office closes. Also, their specialist psychologist and psychiatrist make rounds a certain number of times a week. I most cases their inpatient hospitalizations last somewhere around 5-7 days but they treat you for as long as they need to. I had to leave after a bit over two weeks because I was trying to go back to school that fall (after having left for a year) and the semester started only a few days after I was discharged. Oh, and my primary neurologist who saw me in the hospital was Dr. Stephanie Nahas, who I also see monthly at the center. At the time she was a fellow (working under Dr. William Young) but she is now an attending physician. The psychologist is Dr. Kaiser and the psychiatrist is Dr. Tramuta. They both work exclusively through the headache center. One thing to keep in mind is that Dr. Tramuta bills privately so it won't be covered by your insurance. It's not a bad idea to see him, though after meeting with him in two hospitalizations and many office visits I most recently requested that he not come by my room because I didn't feel that he was helping me (and he's expensive).

2) In June of 2007 I was in for 11 days for IV Lidocaine treatment. The Lidocaine was administered 24/7 and I had to stay on a different floor because your heart needs to be constantly monitored while receiving this strong anesthetic. The doctors that I saw were the same. I had at my disposal essentially the same as-needed medications with the addition of tramadol (ultram) for very severe pain. They slowly built me up to a high dose of Lidocaine, unfortunately to no avail, though I've been told that it is, in general, quite often successful. Some people experience mild visual hallucinations at higher doses of Lidocaine. I did not. After we established that the lidocaine didn't work Dr. Nahas wanted to try another round of IV treatments with the same drugs that I received during my first hospital stay. I knew that they hadn't helped me in the past (and I was quite upset and anxious to get out of the hospital at the time--not because they did anything wrong though) and indeed I had reacted very poorly to the administration of Toradol--the veins in my arms became very irritated to the point of turning orange (a color they remained for more than 24 hours) and I was moderately convulsing. They didn't plan on using Toradol again but that class of drugs, administered through IV makes me very uncomfortable and I also have found that IV DHE (and IM and often nasal DHE for that matter) more often makes me feel worse than better. I ended up checking myself out AMA (against medical advice) though I did talk it through with Dr. Nahas. She just really wanted to do everything that she could to help but I was just mentally/emotionally incapable of staying any longer.

Aside from that enormous tangent (sorry), I would evaluated this hospitalization as very good even though it didn't help me. They did everything right and I'm glad that I tried it.

3) Most recently, in July of 2008, I was again in the critical care unit (for cardiac monitoring purposes) for about a week to receive IV ketamine. I was only the second patient that they had used this treatment with at the hospital--it was and still is rather experimental. Ketamine is also a strong anesthetic, but a dissociative one that is very prone to causing visual hallucinations (which, again, I personally did not experience) and induces a feeling of intoxication while at moderately high doses. The protocol called for the dose to be largely regulated by me, so that I would remain in a consistent state of inebriation just below the level of discomfort/significant disorientation. As I've posted here, this also did not relieve my pain but the drunken state that I was in for 4-5 days provided a very good distraction from the pain so that I wasn't very much aware of it unless I intentionally shifted my attention to thinking about it. After discharge I was given a prescription for ketamine nasal spray to try outside of the hospital. Initially I felt that, like the higher IV dosage, it didn't help with my pain, though this may have a lot to do with the fact that there were no specific instructions on how to take it. I had to determine for myself whether I ought to take it regularly as a preventative or occasionally as an abortive or rescue med. Jefferson simply had not particularly used this drug outside of the hospital before and there isn't really any research to turn to either. In fact, they had to make special arrangements with a pharmacy in New Jersey to specially formulated the drug solution since it is not something that pharmacies normally dispense. More recently, I discovered that the spray is incredibly useful in dealing with my worst headache spikes.

The ketamine hospitalization was unique and I don't think that many other centers offer it as an option (though this may have changed or may be changing). JHC and I both think that it is an excellent option for patients who have essentially exhausted all other treatments. In fact, just recently Dr. Nahas suggested the possibility of a repeat treatment of IV ketamine.

I hope that I've provided helpful information. I do want to stress that I highly recommend Jefferson for planned hospitalizations. I know some people who have felt that their hospitalizations at Jeff went poorly but I think that if you know what to expect and how to ensure that you're kept comfortable then things will indeed go well. I realize that I didn't particularly address the discharge instructions that I received after each hospitalization and I will go into that if you want. I will say that the plans always involve extensive follow-up. I've been asked to come into the center weekly for the month after several of the hospitalizations. While your office visits will definitely vary depending on the doctor you work with, my neurologist, Dr. Nahas, will see me for as long as I need (though I try to be considerate of other patients). I've many times hit the hour mark in terms of face time and even have gone a good bit beyond that when I've really needed to talk. If you do decide to go to Jefferson I'd be very happy to give you some information on the different neurologists and nurses that you could see.

In general though, I've found that those treatment plans were determined very largely by how well (or not well) I reacted to drugs that they administered. I did sometimes leave with prescriptions for medications that we hadn't tried but I still think that the plan was formulated largely around their assessment of the hospitalizations.

Let me know if you have any further questions or want clarification. I'll subscribe to the thread so that I know if you reply.

Best wishes,
Ben

I spent 2 1/2 weeks in Chelsea, MHNI's in-patient unit under the direction of Dr. Rozen, my Neuro at MHNI. They attempt to reset your brain chemistry and you're set up wit 3 or 4 protocols a day of specific IV meds. You are also subjected to the psych portion of the in-treatment unit; the psych I was assigned to was "psycho" and wrote some very bad things about me (and others) she was new, in training and had no idea how sick people with severe head pain are, not to mention how people react to meds.

I got continuously worse in Chelsea, to the point that they finally sent me home; funny thing is though, after being home for about 4 weeks, I really was better. It's been a couple of years and I would actually go back in for a tune up, but Dr. Rozen has left MHNI and I don't trust the person I've been assigned to. I have 5 types of migraines including cluster (the real cluster type ...head banging, tearing, runny nose emergency room pain, O2 treating clusters). The treatment at Chelsea has broken the most severe portion of the cluster, although I still have cluster features, and at the solstices I go back into a cluster period, just not as severely as I used to. So, it was worth it.

MHNI does not accept insurance if you see them at their office, but once you go into Chelsea, insurance is accepted.

Not enough time has passed to really be fair about writing in public about our long inpatient experience. Maybe in six months or so with more perspective it will be the right time. There are some very good things to say, and there are other things to say.

One of the best things is spending time with other people in the same predicament. While it is sad to see others suffer, there is an aspect of relief about being with a group of people who really get it without having to have it explained to them. By them I mean the other patients and most of the nurses.

One thing I feel comfortable about sharing is this: If you think prescription narcotics are becoming not so useful or are taking over your life or are creating more problems than they are solving, inpatient programs are the way to go to get off of them. The doctors do their best to really get to the bottom of your particular situation, and know how to get rid of the narcotic effects with minimal suffering. Most of the time they can make things at least somewhat better and usually without narcotics -- which means they are really getting to the cause of things and not covering it up.

Also never doubt that the psychologists have their hearts in the right place. What they do has a better chance of helping if you go in with an attitude of cooperation. Which -- oddly enough -- is true of doctors too. You might get along with them or not, but since you are there and paying the fees give them every chance to help. You might find out you have habits you never recognized in yourself that are possible to change and will help with your pain.

Rule #1:  Do Not Give Up.

Rule #2:  Write down what you want to ask about, what you want to get answered.   Edit the list until it gets all the thoughts clear without losing facts about events.  Why?  Because when you are in pain and with the doctor you are not able to remember and say what you want.  It does no good three days later to kick yourself about forgetting to mention this or forgetting to ask about that.    Make the list.   Take it with you.  Use it.

 

Janice- Where exactly is this doctor that did good work on you? I live in PA and would be willing to travel some distance if it meant good treatment! Thanks ahead of time for any help you can give me!

kristinw said...
Janice- Where exactly is this doctor that did good work on you? I live in PA and would be willing to travel some distance if it meant good treatment! Thanks ahead of time for any help you can give me!

Kristin,

I've been getting treatment in SE Pennsylvania for more than six years now. I'd be happy to provide any sort of information about area doctors (neuro/psych/sleep/alternative)--I've seen a ton. I also have seen a bunch of specialists in the Pittsburgh area and the Lehigh Valley area.

Janice- I am definitely going to check out this doctor. Thanks for the information!

korbnep- Thanks for the information on your meds! I am going to research them to see if any might work for me. Then I can bring them up with my doctor on Tuesday. Any info on other doctors or clinics is quite welcome! I appreciate it!

Ben- I am "processing" your post and email! I haven't had much of an attention span today, hopefully will be refreshed in the morning. Hope you are well.

Sara

Reading your story, seems there are two avenues that matter you haven't mentioned as having explored.

I wonder have you been evaluated for low CSF pressure?  I ask because a specialty neurologist explained to us that if you have that for a long time, it doesn't improve with lying down head-lower-than-legs and medications make little difference.   He also said that many times it never will have improved with head-lower-than-body position changes.  You might have a CSF leak, seems the more 'double jointed' you are the more liable you are to have this.    If the leak can be found and patched (hard to find the leak, not so hard to patch it if found) that's pretty much it for your headaches.   The pain here is often, not always, felt on the top of the head.

The second avenue you haven't mentioned is oral-facial pain specialist dentists/ orthopedic types.   They know and care a whole lot about nerve compressions relative to where the jaw connects to the head.  'TMJ' and so on. The nerves there actually connect to nerves that give pain in the back of the head as well as the frontal and side regions, go figure.

Anyhow, that's the advice we got from neurologists after they've treated potential chemical imbalances with medications and have not made much progress.

 

Seems you've had about every look at your head there is  (I'm assuming MRA and MRV also).

So, you know, logic and all: it maybe shows up in your head but lives somewhere else. 

I see endocrinologist is missing from your list?  Maybe more youthful hormones were protective, as they decline your headache gets worse.  (google Migraines and menopause for a wild ride: ..A common symptom of perimenopause is increased headaches and often debilitating migraines...)  I've heard of other very slowly progressing conditions (most all treatable) that pump out seratonin and others prostoglandins which are way up there in the headache trigger world.

 

All the science compares triggering a migraine to a water level rising to spill over the rim. People with migraines have them because something is, so to speak 'keeping the rim lower than it needs to be to be pain free'.

Anyhow, not all the things that 'lower the rim' have their origins in the head. In fact lots of normal processes in the body deposit substances in the blood that gets carried into the head and they have an effect there.

Naturally the first place to look is the head because things going on there are more likely to have a more immediate effect. That's why you go to see neurologists.

But, you know, after they've taken their best shot, the next best place to look is for those who know about body systems that involves substances that make it to the head --  the allergists, the endocrinologists and hematologists nephrologists and oncologists.   Get some suggestions from your local general practice family doctor about which specialty to add.

What I've noticed most about neurologists is that if they were quarterbacks on a football team on fourth and long yardage they would never punt. Just one more drug, just a few more months, etc. I think working with them is a good idea because new things are always happening, but working with them exclusively after years of, well, lets be nice and say 'not so much success', well. So branch out, the costs are low compared to the possibility of good result.

Post Edited (DadofPainboy) : 6/9/2009 10:34:51 AM (GMT-6)