Migraine

My doctor and I have been trying to contact Jefferson Headache Center (Dr. Young in particular) for over a month. My doc's office has left multiple messages, I have left multiple messages, and neither one of us has gotten a call back. Well, I did get a call back over a week ago, but I didn't get the call and they left a message, so when I returned the call and left another message, I now haven't heard anything back. I went back to the bottom of the list, I guess.

My doc really thinks I should try Jefferson, and after hearing so many great things about them and Dr. Young, I am willing to take on the expense and inconvenience of traveling from Arkansas to Philadelphia, but if this is any indication of the treatment there, I am now uncertain. If they aren't accepting new patients, I would like to be told that so that I can look for another clinic to visit.

Has anyone else had this kind of expereince when trying to get an appointment there? Once you become a patient, are your calls returned quickly and do you feel like the office is accessible? Is this indicative of the office staff or anything else there?

Please give me some feedback so I can know what to do next, whether I should keep waiting or move on to somewhere else. I really had my hopes up about Jefferson, and I am so disappointed right now.

Thanks for any info,
Julie

I am a patient at Jefferson and have been for 4 years or so. It was really hard getting my first appointment. I didn't rely on them calling me back, I just kept calling until I got through. I called all the tiem and so did my husband. Finally we got an appointment. The receptionists aren't the greatest to be frank. So I wouldn't rely on them. You need to take charge if you want to get in. The do close down during lunch hour.

Oh and once you are a patient it is so easy to get through. It is that first appointment that is so hard to get!

I'm sorry, but I've got no experience with Jefferson. I'd probably try a third call at a time when I was going to be able to be near the phone for an extended time, explain that I'd missed the last call back, and that the second call wasn't returned, and offer times that would be best to reach me. If I still didn't get a call back after that, then I'd be wondering, too.

Thanks, for your posts!

Beaker, did you call multiple times per day? Did you leave messages every time? I don't want to seem like a nutcase, but I want to get through and get an appointment! How long would you say it took overall before you got a call back?

Thanks. I am so glad it will be easier once I get the first appointment behind me. Do you live close to Philly? Have you had to go inpatient there?

Julie

I had a similar issue, it took me a long time to get my new patient appointment. There's only one person that handles that I believe and they never answer the phone. If they do return your call and you miss it (I did twice) then you have to start over again leaving them messages. It can be a pain but once you get your first appt the rest are simple to schedule. the reason is they have you meet with a number of people during your initial visit so i'm sure it's difficult to co-ordinate.

Krugger, Thanks for posting. It's good to know that this is normal, even if it is frustrating. What are your appointments usually like? Have you been a patient with other neurologists before? Do they seem to do anything different at Jefferson? Have you had to be inpatient?

I am sorry for all the questions. I will be traveling a lot to get there and I am trying to get an idea of what I can expect.

Thanks!
Julie

Hi Julie,
I just had my first appointment at Jefferson, it took me a long time to get the appointment, I had the same trouble as you. I was soo excited for the appointment, maybe overly hopeful because I was very dissapointed, I too traveled to get there (only 4 hours) however private pay because my insurance does not pay out of state. I have heard many other people had great experiences w/Jefferson so it is worth a try!!! Good luck and i wish you the best.
Robin

Hi, Robin. Thanks for posting. Do you think that the disappointment was just a let down from how excited you were, or did you get there and find that they offer nothing new? That is my fear, I guess, that I go there and there's really nothing that hasn't already been done. I do think (hope) that maybe if/when something new comes along that they will probably be among the first to know about it. I am like you, I was SO excited when my doc first mentioned referring me there, and that was over a month ago with only one call back that I of course missed. So my excitement has subsided somewhat since then. That's probably good though, because I don't handle the roller coaster of getting my hopes up and being let down very well. I don't want to go there and just have a regular doctor appt and then turn around and come home, you know? I want them to know something and try something new--but after 10 years of treatment and probably 5 or more docs along the way, that may be a lot to hope for.

Thanks for your input! It helps to know what other's experiences were and that it just plain ole takes a while to get that first appt.

Julie

having been there for 2 visits i don't know that i'd recommend going so far out of your way to come here. i've been to U of Penn Neurology and Jefferson here, and neither really wowed me though Jeff was better. i'm outpatient only, with frequent but short lived migraines (IE i get a few a month but they only affect me for hours, not days on end like some unfortunate folks). i would see if anyone here was in more serious shape and how they made out at Jeff.

Hi Julie,

I'm a patient at Jeff. I've been going there for a couple of years now. I fly to Philly and take a train to get to the docs. Then I take the train and plane back home later that same day. IMO, it's worth every penny!

I had no difficulty with getting my initial appointment, but I've heard of others here at the forum who have had experiences similar to yours.

The first appointment is long, as they require you to see the psychiatrist/psychologist. It's also costly. But it makes good sense to be sure that the patient is not suffering from things like severe depression, anxiety, etc.

I'm really benefitting from my care at the Jeff! I am a chronic, daily, severe migraine sufferer. I've had inpatient/outpatient IV's, nerve block and trigger point injections, and a multitude of medication changes and adjustments. I've also recently had an Occipital Nerve Stimulator implant surgically placed as part of a research study.

I feel like the doctor and the nurses aren't going to give up until we have a plan that gives me the best quality of life possible! Seeing that attitude in my treatment team really matters to me--It keeps me from giving up, too.

Only you can decide if a doctor/facility is best for you. For me, Jefferson is helping quite a bit!

jenny

Sorry I am now just getting back to you. I have been going to Jefferson for about 4 years. It is hard for me to remember exactly what I did regarding my first appt., but I don't remember someone calling us back. I thought I had to keep calling until I got intouch with someone. I was a teacher at the time and called when I had breaks and my husband was in an office and he was able to get through and make an appt. It took awhile.

The first appt. is long and A LOT of waiting. You fill out a LONG survey of questions see Psycologist/Psyciatrists (sorry for spelling errors). Then you see a doctor and possibly a nurse. I never saw a nurse nor do I now because I see a fellow. The fellows spend a lot of time with you and are great they just are only there a year and another fellow replaces them. With the fellows though you also see another doctor like Young etc.

I do like Jefferson because they are so advanced. I have seen some doctors around here where I am not lying but I knew more about migraines then they did. So it was a big relief seeing them. At times I get frustrated with waiting and traveling but I know they are like the best place out there.

I have been to the infusion unit for three days in January and next week I am scheduled to go to the hospital inpatient unit. I was never there before but a lady I talk to via email has. I met her through this board. I travel 2 hrs. away.

Thanks for your post, Jenny. It's very encouraging. Which doctor did you see? how is the Occipital Nerve Stimulator working for you?

They finally called me back! I have an appt with Dr. Young, who I requested, in July. As the date gets closer I may write you for some information about traveling from the airport to the office and that sort of thing. I hope I find the travel and treatment as worthwhile as you do.

Julie

Beaker, they finally called me back! I have an appt with Dr. Young in July. What is the infusion unit? Please let me know what your inpatient experience is like. I hope you find help there!

Good luck, and thanks for your posts. I appreciate all the information.

Julie

Julie,
Welcome back. Since you are unable to get into Jefferson until July, would you consider going to Dallas and see Dr. Krusz? There are also many forum members who see Dr. K and he is the site physician.

John Claude Krusz, PhD, MD

Take care and good luck.

Cindy