Migraine

After much searching to find places that our ins will take I finally found two. Anyone have any input? No matter what we will have to travel..there isn't anything near us.Thanks!!!

Hello and welcome!

That's a tough question. I went to Dr. Young at the Jefferson, and he was great. I know what you mean about having to travel. The Jefferson is an eight-hour drive, each direction, for us.

Welcome again,

Hi

I have taken my 13 year old son to both. We went to Diamond at the recommedation of our local neurologist. They sent us there knowing my son would probably be hospitalized. They felt very strongly that this treatment would help a lot. We did go to Diamond. We actually had to fly there. We saw Dr. Nissan. I did like him. I did like the hospital set up as well. They have an entire floor in the hospital for headache patients. They run a lot of classes there for many different headache topics. My son has since been hospitalized at a children's hospital. I prefer Diamond over the children's hospital. The treatment my son got did not resolve his migraine problems. We decided not to continue treatment there due to the distance.

We have since been referred to Jefferson. It took a bit longer to get into Jefferson for an apptmt. We are seeing a fellow there who will be leaving soon. After our next appointment we will have to see a different fellow. We have only had one apptmt there, and will going for the second time on Tuesday. I feel very confident with the fellow, and his supervising physician (Dr. Young). My only disappointment with Jefferson was that I was told that we could see Dr. Young as a patient when the fellow left. I have since been informed by the administrator that that is not their policy. It would take an act of God to be able to switch to Dr. Young now. I am very disappointed with that, but still feel good about Jefferson. Jefferson is only a 4 hour drive for us.

Good Luck.
Jean Ann

Hi,

I have been to b oth Diamond and Jefferson. I went to Diamond about 2 years after they became chronic- was hospitalized for 2 weeks twice. Neither time helped very much. I went through a bunch of preventatives- finally I had bad side effects to topamax and that was the last straw. Also, it was pretty hard to communicate with the drs.

Jefferson was great. I did have to wait for an appointment, but managed to get in on the cancellaton list. I saw Dr. Silberstein, who was really terrific- the staff there was great as well. On the first day, I saw the pyschologist, nurse, complete history, then Dr. Silberstein. He basically looked at my chart and said, "I don't think that medication alone will help you, however, I think you would be a great candidate for an occipital nerve stimulator." I had responded really well to occipital blocks in the past. He immediately called the neuro-surgeon and asked us to wait until he heard back, I had an appointment the next day. He simply said- try this, and if that doesn't work, we will go from there.

The trial went well and I had the stimulator implanted in June 2004. It basically allows the medicationw to work better for me.

I was impressed because they really listened well and clearly laid out all the cards as well as some back up plans.

So I would reccomend Jefferson, but this is simply my experience.

pain free days,
sconesail

Hello -

I've been a patient @ Jefferson Headache Center since I moved to Philadelphia in 2004. Dr. Silberstein is my neuro, and I see Dr. Kaiser (psychologist) for therapy and Dr. Tramuta (psychiatrist) for some other meds. I long ago figured out that I'm the person primarily responsible for whether or not I get/stay well. Frankly, I find the Center chaotic and disorganized, and Dr. S rather odd. However, I've managed to do well there. The nurses and nurse practitioners are kind and competent, and I love Dr. Kaiser. I'm happy with Dr. Tramuta, and Dr. Silberstein is a good guy, just not the warmest person I've ever met. Incidentally, they're always behind schedule, sometimes many hours, and the receptionists are rude, loud, and too busy with their personal chatter to assist patients - it's hard for me to believe that those raucous women work in an office with headache patients. Just be prepared for that - bring a book, snacks, sunglasses, and earplugs.

I had a lot of luck with Dr. Alexander Mauskop @ the New York Headache Center when I lived in NYC - he helped me through terrible rebound. Nice office with soft lighting and quiet staff, warm demeanor.

Best of luck.
Stephanie

Stephanie,

I'm truthfully shocked at most of your description of the Jefferson. I've been a patient there since 2001. Dr. Silberstein is the kind of doctor you really have to ask for information, from what I've heard -- he doesn't offer it as readily as Dr. Young does. Dr. Young and Dr. Tramuta are who I see there.

Yes, they've almost always been behind when I've had morning appointments, but then, I expect that since the take emergency patients ever morning AND the fact that they're behind has never resulted in them spending less time with me or not answering all of my questions.

Actually, I've also had the opposite impression of the receptionists. I wanted to give one of them a medal one day for softly scolding a woman who showed up for her appointment bathed in perfume. I only overheard because I was standing there checking in.

I've also felt the clinic was lit better than anyplace I've ever been. No overhead or fluorescent lighting in the waiting room or hallways is a big plus in my book.

Just some comparisons,

quote:

Originally posted by Stephanie:
Hello -

I've been a patient @ Jefferson Headache Center since I moved to Philadelphia in 2004. Dr. Silberstein is my neuro, and I see Dr. Kaiser (psychologist) for therapy and Dr. Tramuta (psychiatrist) for some other meds. I long ago figured out that I'm the person primarily responsible for whether or not I get/stay well. Frankly, I find the Center chaotic and disorganized, and Dr. S rather odd. However, I've managed to do well there. The nurses and nurse practitioners are kind and competent, and I love Dr. Kaiser. I'm happy with Dr. Tramuta, and Dr. Silberstein is a good guy, just not the warmest person I've ever met. Incidentally, they're always behind schedule, sometimes many hours, and the receptionists are rude, loud, and too busy with their personal chatter to assist patients - it's hard for me to believe that those raucous women work in an office with headache patients. Just be prepared for that - bring a book, snacks, sunglasses, and earplugs.

I had a lot of luck with Dr. Alexander Mauskop @ the New York Headache Center when I lived in NYC - he helped me through terrible rebound. Nice office with soft lighting and quiet staff, warm demeanor.

Best of luck.
Stephanie

I can not help you with Jefferson because I have never been there.

I can give you my oppinion of Diamond Headache Center in Chicago, IL. because I have only been home 2 days.

You could NOT get me to go back there for a million dollars. I checked myself without dr ok it was so horrible for me anyway. I am also a very hard patient to treat because I am alergic to so many medications. I arrived on a Thursday so that could also be part of the problem, because I think most classes are offered Monday through Friday.

I liked the Dr that checked me in...but, then she tells me she will be gone for 6 days of my 10(aprox) days of treatment. So another dr took her place and he was HORRIBLE. I am afraid of mentioning his name because I don't know if I can get into trouble or not even though I am only stating my own oppinion.

He was extremely rushed...( I took the advice of someone on this board..I am so sorry I can't remember who gave me the advice right now because I am new to this board). I wrote down about 5 ?'s and got to ask One and he exploded on me.

I have severe panic attacks sometimes. The dr that checked me in told me I could take medication for my panic attacks as long as the nurse gave it too me. I have an extreme fear of closed in spaces so elevators are horrible for me. I had to go from the 9th floor to the 3rd floor for a MRI..that is the ONLY time I asked for my panic attack medication because I knew the elevator would bring one on. Please keep in mind that this was all discussed and arranged before I checked in. The new Dr. took it away. If anyone has ever had a panic attack....just knowing you have your medication is a security blanket whether you take it or not. Knowing you can't brings on Panick attacks.

Some nurses were very nice and some are very rude...but, I expected that. I think that happens in all hospitals.

I will put more in another thread.

Please remember this is my oppinion ONLY and this is also my very first visit for an in patient migraine hospital.

I, too, have been to both the Diamond Headache clinic and to Jefferson.

I went to the Diamond Headache clinic about a year ago and they admitted me right away which was great. That sounds bad but I was desperately in need for help. They kept me for two weeks but their treatments didnt work and because they were so far away from me, they referred me back to Jefferson. But the doctors and the nurses were great - they treat the patients with respect and, because I have clusters, were very quick to act when I had an attack.

Jefferson is also very good - I travel there now and it takes all day but it is worth it. I started out with Dr.Rosen but was transferred to Dr.Young soon after. They have admitted me twice and their headache staff have done a remarkable job.

As to Dr. Young, though he might run late on appointments he always spends time with me and answers all of my questions. He is the first neurologist that has looked me in the eyes and promised that he would not give up on me. I cant tell you how much that meant. He might be out of ideas but he is always looking for new treatments to try with me, even if they are hard to find. When I was approaching surgery for a trial for nerve implants, he promised that if my insurance wouldnt cover it that he would fight for me. He is also working very hard for me to get to California or Arizona to see a doctor. He just has done more than any other doctor that I have had.

I know that I have said alot about him and Jefferson but they deserve alot of credit. I left the office crying the last time because of frusteration that I cant find relief and it wears me down and those receptionists wouldnt let me leave until I had promised not to give up. They care. And Teri is right, their office is designed for headache patients and the staff is prepared for emergencies - like when I got hit in the middle of the waiting room.

Anyways, sorry for rambling. And I hope that this helps some.

Jill

Jill,

Hello and welcome! I understand fully why you had so much to say about Dr. Young. He truly helped me get my life back. I had a Migraine a couple of days ago, but before that, I'd gone 2 months and 5 days Migraine-free. When I started seeing him, I was down with a Migraine an average of 5 days a week. I'll never forget my first appointment. He looked me in the eye and said, "You don't have to live this way. I won't give up on you if you don't give up on me." On a slightly different note, don't you think he looks like Harry Potter?

quote:

Originally posted by Jill:
I, too, have been to both the Diamond Headache clinic and to Jefferson.

I went to the Diamond Headache clinic about a year ago and they admitted me right away which was great. That sounds bad but I was desperately in need for help. They kept me for two weeks but their treatments didnt work and because they were so far away from me, they referred me back to Jefferson. But the doctors and the nurses were great - they treat the patients with respect and, because I have clusters, were very quick to act when I had an attack.

Jefferson is also very good - I travel there now and it takes all day but it is worth it. I started out with Dr.Rosen but was transferred to Dr.Young soon after. They have admitted me twice and their headache staff have done a remarkable job.

As to Dr. Young, though he might run late on appointments he always spends time with me and answers all of my questions. He is the first neurologist that has looked me in the eyes and promised that he would not give up on me. I cant tell you how much that meant. He might be out of ideas but he is always looking for new treatments to try with me, even if they are hard to find. When I was approaching surgery for a trial for nerve implants, he promised that if my insurance wouldnt cover it that he would fight for me. He is also working very hard for me to get to California or Arizona to see a doctor. He just has done more than any other doctor that I have had.

I know that I have said alot about him and Jefferson but they deserve alot of credit. I left the office crying the last time because of frusteration that I cant find relief and it wears me down and those receptionists wouldnt let me leave until I had promised not to give up. They care. And Teri is right, their office is designed for headache patients and the staff is prepared for emergencies - like when I got hit in the middle of the waiting room.

Anyways, sorry for rambling. And I hope that this helps some.

Jill

Hi Teri,

Yeah, it meant the world to me that he told me that he wouldnt give up on me and he actually tells me that at every appointment. I usually need to hear it too.


I am glad that he could help you so much - he said that if he helps ninety percent of his patients than that makes him a good doctor. There will always be those ten percent that he cant help, I seem to fall in that category. Sometimes I wonder if it is harder on him or me to hear that he doesnt know what to do...

And, I have never thought about him looking like Harry Potter but I am going to have to remember that for the next time that I see him.

Jill

I know this is an older thread, but I just found it.

I have been to the Diamond Headache Clinic (DHC) and thought I'd relay my experience with it. When I went to Diamond, it had been after I had been hospitalized a few months prior at another local hospital and under the care of a neurologist who told my husband that he thought the reason I was in pain was because "She must be depressed." He had me on butalbital and toradol for 3 months straight! Later, I found out that I was having rebound headaches on top of my NPDH and migraines! URG! Finally, when we went to DHC, I was in desparate straights and not very trusting of doctors.
On my first visit (a year and eight months ago), I found the DHC
nurses and staff to be very comforting. They even put me in a dark room and let me lay down while I waited for my appointment so I didn't have to wait in the waiting area and gave me a shot. I remember very little of my first appointment b/c I was in so much pain other than that Dr. N and the other staff made every effort to alleviate my pain. He gave us great hope and comfort which, I really needed.

I was admitted directly to St. Joseph, which others have already described as being a floor dedicated to only headache patients. The lights are dimmed. It is nice. It also has an attached wing for family members to stay on. Although, my family opted not to do so, as we live nearby.

My stay was 7 days, and was cut shorter than my Dr. would've liked by my insurance. However, it greatly decreased the pain as I detoxed off the painkillers and got me headed in the right direction. The classes that I went to while I was there were invaluable. I learned so much about exercise, posture control, meds, diet (tyramine), yoga, biofeedback, ect. There is a pharmacist available to answer questions about meds you are on. They had a wonderful living room type room where you could watch informational videos about classes that you might've missed. I missed several during my DHE-IV infusions b/c they made me feel so terrible. They also had lots of games and puzzles and movies you could watch to pass the time.

I was also seen by a physical therapist and evaluated by a psychiatrist. I really appreicated the holistic approach. I didn't like how my other neurologist just wanted to throw medications at me.
Since my hospitalization, I have seen Dr. N for visits every 2 months. And, I love him. He includes me in decision making. He answers all my questions. He challenges me to keep up my exercising. He looks at my headache diary and takes that in to account. He has "calling hours" 4 days a week. So, if I am having a bad migraine, I call him, and we discuss over the phone what to do and he calls in meds for me. He always takes my suggestions into account. The DHC also has a nursing phone line during office hours and the nurses will answer questions. I have even had to call in after hours for an "emergency" and the on-call doc was really great.

What I don't like about it is the location of the office. For me, it always feels like a nerve-racking drive to get there. I HATE driving (or even being a passenger in a car in) downtown Chicago (I live way out in the suburbs.) My husband takes a 1/2 day of work to drive me there and he says it gives him a headache! It is downtown Chicago and not convienently located. Both my husband and my anxiety level goes way up just from the drive. After an appt, we always do a happy dance that we got through downtown. The drivers are crazy!
Anyway, that is my two cents.

Kelly

I've been a patient at the Jefferson Headache Center since 2004. I am blessed to see Dr. Young. My very first appointment there I was told that they never run on time, emergencies always come first... be prepared to wait because that is part of being a patient there. I always bring a book and have never been seen even remotely near to my scheduled time. It doesn't faze me... I know the drill, I understand and appreciate they told me up front. I do try to get the earliest appointment time I possibly can... but I have the luxury of walking 2 blocks and taking a 20 minute train ride to get there.

I feel like I've recently turned a corner with my relationship with Dr. Young. I've been through 8 preventative medications... the last one being zonegran which was an evil, evil drug for me and made my headaches worse.
I've recently had a brain scan, and a lumbar puncture... I believe Dr. Young is trying to think about my case differently. When I last saw him, he said to me, "We haven't really helped you much in 3 years, have we?" I had to agree with him... other than being the source of my pain medications. I had an infusion last year to break a headache cycle and it didn't help... but was $800 out of pocket.

I'm realizing now that I am much more than a partner in my headache care... I'm starting to use each visit with Dr. Young as a question and answer session... I write everything down I want to talk about and write down his responses... it is the only way I remember.

Dr. Young is a smart, kind, gentle Dr with a WHOLE lot on his mental plate. I try to take the attitude that I need to do everything I can for it to be easy for him to help me.

To be honest, I thought about leaving the Clinic after my bout with Zonegran. They had me come in and talk to a nurse practitioner WHO insisted I immediately start and new preventative... I told her I would not and left in tears. My next appointment was with Dr. Young and that's when he found the Empty Sella Syndrome on my brain scan... the start of a new direction.

I do agree that the desk staff can be RUDE... but I then try to think about the day in and day out of dealing with people in extreme pain. They've actually gotten better since I've started going and I feel like they are on some protocol now that they weren't before. Every so often I get a questionaire in the mail about my latest visit and my experiences with staff and care.

Overall, It has its idiosyncracies... but I feel blessed to be a patient there.

Thank you Betsy for you honest assessment.

Diamond has my vote, been going there since 2003, Dr Pepper is great, she listens to me, has told me great idea! when I read about the haller cells and wanted that checked. Listens well, takes me seriously, and really cares. She looks at my face when she comes in the room and can read me right away.
Have been to 2 or 3 other Drs trying for someone closer to me, went to one appt each and went back to Dr Pepper.
Sometimes getting through to them when I need something and I'm calling in can be a pain, but one night when I was in the er she called me at the hospital, (I had left my cell # with her earlier), don't know where she got the number and it was 9p! All I can say is what a gal!

I started going to Diamond Headache in June of 2003 thru May 2005, it is
a 12 hr round trip. And became very costly, my husband would have to take a FMLA to take me, then a vacation day for the next day to rest up from the drive. He wasn't paid for the FMLA, so he lost a days salary, that and gas, stopping to eat added up quickly.
Diamond has a very good inpt unit at St. Joesph Hospital right across from Lincoln Park, Lake Shore Drive, so you can see the lake from the hospital. The staff is friendly for the most part. I think the most useful thing I learned was Biofeedback. None of the meds they tried worked for me, but my medical history is complicated with other chronic pain issues. This causes treating the migraines to be more difficult.
They were not really interested in trying to help treat the other chronic pain issues.
I am now seeing a neurologist allot closer to home at the University of Columbia Hospital and Clinics, in Missouri. I see Dr. Robert Burger, he is a great guy, I really love him. He has bent over backwards to help take care of all my chronic pain issues. And we are starting to make some headway with better control of the chronic daily migraines.
I guess what I saying is you don't always have to go to a big name headache vacility, sometimes you can find a very good neurologist close to home. Who will work with you just as well, check the physician referral guide in this site and see who may be listed in your area. I live in Missouri, so the Dr I talked about is in Columbia, MO, web link to look him up is www.muhealth.org I hope some of this has been useful.
Roni