I have an apt at John Hopkins in the neurology dept. I know they have a trigeminal neuralgia clinic but I have not seen anyone here talking about going to hopkins for this. I feel comfortable with my new neurologist for pain meds. He has 4 people with this. I live in an area not very populated so I find this unusual. I have read most docs will never see this. This guy diagnosed me immediately and I had ready figured out finally what I had. No one at Thu or univ Mr all these years even mentioned it. They said I had vascular artery migraines. I wonder now how many people diagnosed with complex migraine actually have neuralgia. Anyway,anyone have experience with hopkins?
John Hopkins university was my first contact in the USA. I sent them all my medical information via mail first, because I wanted to avoid the trip from Europe to the US just to hear that they can`t help me.
The neuro department had a close look at my case and spent quite some time to discuss it, but finally descided to refere me to Dr. Winfree at Columbia University in NYC, because my pain syndrome is too complex.
My conclution from this is that, the people from John Hopkins are very dedicated, helpful and have a lot of knowlege but they also know where to send you, in case they don`t know how to help you.
I think this is great because most doctors would never admid, that you should better see someone even more specialised then themselves.
I have never physically been to John Hopkins Hospital, but the experience I had with them was verry verry positive.
They did not even take a dime for assessing my case.
First let me say I do not have neuralgia, however I have been to Johns Hopkins many times. I began going to their Neurology dept. in 2009 for another neuro problem. I was seen by the best physician I have ever met, but sadly he died in 2012. I then switched to a neuro closer to home. However I still have 4 physicians at Hopkins and am willing to make the 3 hour drive because the are all top notch. Both as people and physicians, I admoure them.
About the facility and staff itself:
- The facility itself is massive but it also has a friendly feel to it. All areas are well marked and easy to find, sometimes just be prepared for a hike!
- They have a web site that you can access once you are a patient, it’s a great way to keep track of all your appointments. You can email your care team for refills, with questions, or just about anything else.
- If you are coming from a distance they have a concierge that will give you the names of local hotels offering a discount to Hopkins patients, most of these hotels offer free shuttle service to the hospital.
- You can expect excellent care for sure. They are up on the latest information, studies and procedures. However the physicians I have seen give you the positive and negatives for the procedures and give you time to process it before expecting a decision. I have never felt rushed or misinformed at any appt.
- I have had three surgeries at Johns Hopkins Bayview campus. My first post op admission lacked the care I had expected, I did bring this to the attention of the surgeon. The next two surgerical admissions went much smoother.
- I was treated at the Blaustein Pain Center of Hopkins about 5 visits for nerve blocks. They were very efficient, but it was a rushed experience, not much time for questions. So I learned to ask the questions prior to the procedure or email them so you are aware of what you need to know.
I wish you success at your appt. there, hope all goes well. Just remember you will be in great hands.
Thank you both so very much for taking the time to give me this information. Mike how did you get a diagnosis? I think I have something wrong with more than one cranial nerve but until this latest neuro said I have GPN no one had ever mentioned a cranial nerve problem to me. I wish I could get someone to give me some blocks to try and figure out which ones are involved but so far have not been able to get anyone to do that. they just want to throw meds at me. I did not see anything about glossopharyngeal neuralgia on JHU website. I am concerned they may not be able to help me also because so far I have not met in been in contact with another person that has my group of problems.
I am started with violent uncontrollable vertigo that was accompanied by speech impairment and stabbing ear pain. I was having the attacks daily, sometimes they woke me from sleep. I got a menieres diagnosis but menieres does not cause speech problems so they knew that was not quite right. Still meds got it under control for about 8 years then I was in a car accident and got pregnant also and it came back. This time meds did not work so they killed off my right balance nerve with gentamicin. They said I was having basilar artery migraines and hemiplegic migraines which was a better fit diagnosis wise. I still have attacks but they are less violent and I get fair warning a half hour to 45 mins before hand so if I can get to a quiet place and take some meds I can usually head them off.
So several months after the car accident I had sudden hearing loss in the right ear and a few months later lost all of my right bottom teeth. I also mostly lost the use of my right hand after the accident that got better after much PT. No one could ever tell me what caused that but it has never been the same. Electrical flashes shoot dwon that arm periodically. I also started having episodes of bells palsey like symptoms. I saw someone here that said an oral surgeon said this happened a lot to people with GPN but cant remember who? anyway, for the last 15 years the right side of my mouth has been weak and sometimes numb.
Several years ago I started having very bad pain in my right shoulder. The chiropractor said my purse was too heavy. Then my right jaw started hurting and felt better with my mouth open. Then my neck muscles got very tight. Then my throat started hurting and the back part of my tongue on that side started being weak. Then I started having shooting pains in my face around my mouth where it was weak. I was diagnosed as atypical facial pain. My tongue hurts and my throat is very sore. I cannot eat on the bad side. More bothersome in my case is that the tongue goes numb or fails to work on that side. I also get dizzy if I move my arm on that side too much. It feels like my tongue is being pulled backwards down my throat. The neuro said it is glossopharyngeal neuralgia. It sees to be very connected with my shoulder pain and moving my arm really makes it flare up.
I guess this was not the place to go into so much detail. I just wish I could get a god diagnosis. I have had the MRI and CT with contrast, no fiesta yet though. I am at the point where I vacillate between wanting to know what is wrong and just saying the heck with it and continue taking the meds. The problem is the amount of med I have to take to function also makes me sleep 12 hours a day and I am raising a child. To be honest the pain is horrible but the dizziness is what keeps me grounded. I just cant have a normal life because I have to keep running home to lay down to head it off. Its been 15 years and I am so tired of it. As soon as I adapt to one problem another comes along. I am grateful not to have the violent vertigo though that was the worst thing that ever happened to me. There is no life with vertigo everyday.
any suggestions welcome
I have no information on John Hopkins but have had 2 MVD surgeries 6 yrs apart. One was in Charlotte, nc, the other in Pittsburgh, PA. Unfortunately neither was successful at reducing my pain or reducing the meds which really slow me down.
Suggest considering UPMC if John Hopking does not work out for you.
UNIVERSITY PITTSBURGH MEDICAL CENTER has a dept that specializes in cranial nerve disorders. My surgeon was Paul Garner, the first contact would be Lois Burkhart who coordinates that dept. Both are very qualified in what they do. I can provide you more details if you like.
We have a "find a doctor" page at Living With TN. Listings for the State of Maryland include the following. Most who have an interest in Trigeminal Neuralgia will also be well grounded in Glossopharyngeal Neuralgia and related neurological face pain issues.
Dr. Alan Genut, Neurology
Sinai Hospital, Baltimore:
Dr Richard North
Johns Hopkins Hospital
Dr. Benjamin Carson - Soon retiring, now referring all patients to Dr Lim
Dr Michael Lim
University of Maryland Medical Center
Orofacial Pain Center
Children's National Medical Center-
Dr. Scheller, Pediatric Neurologist
Dr. Marcia Ribeiro