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 prescript
ion 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 prescript
ions 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.
DX: NDPH, Recovered CRPS
RX: Lamictal, Methylphenidate, Clonazepam, Wellbutrin XL, Namenda, Oxycontin, Oxycodone, Magnesium sup.
PRN: Ketamine nasal spray, Celebrex, Migranal, Haloperidol, Zyprexa, Lodine, Zofran, Phenergan, Thorazine, DHE IM, Droperidol IM, Toradol, Reglan, Ambien CR, Provigil, and all triptans
Post Edited (korbnep) : 6/1/2009 10:21:13 AM (GMT-6)