Any real benefit to going to a high end hospital/center for evaluation?

[Dignan]

My question refers to the actual tangible benefit of going to Mayo Clinic or Johns Hopkins type places. Like many of you, I've seen seen mulitple neurologists and had second opinions.

I obviously understand and believe in finding the best medical care possible (especially if you are having trouble with a diagnosis or controlling seizures); however, after a med change several years ago and having side effects that my neuro couldnt explain, I began to get other opinions. I went to a research hospital locally and saw a few other neuros as well.

I found that these other neuros mostly did the same thing and that it was very difficult to find a new doctor or treatment facility that really looked at my unique situation up front. When I went to a new place they basically went through the obvious questions and basic tests up front (which I understand, but found a waste of time).

At the end of the day, I stayed with my neuro because he at least knows me and knows my entire history and I didnt feel like i needed to re-educate someone and go over the same basic info again and again without them listening to why I was there in the first place or trusting me enough to believe me when what i told them didnt jive with a typical patient.

I already know and admit I have seizures, I just wanted someone to help with me with side effects that didnt adhere to what docs said should normally happen.

Having said all that, friends suggested places like Mayo or Johns Hopkins to get a work up and i looked into it, and even emailed and spoke to some people there on the phone, but my experiences led me to wonder if all the money and time and aggravation was really worth it or if it would be more of the same.

Would I just end up with, yes you have epiliepsy, yes it is controlled with medication, yes those side effects aren't typical and we're sorry you experience them (or doubt that they are caused by your meds), and there is really nothing else to do but switch to another med and see how you do with that one, or perhaps surgical route (which we dont recommend because you are controlled with meds).

Anyway, I just wanted to know if any of you feel travelling to one of these so called high end facilities really is worth it if your seizures are controlled but you are looking to just feel better in daily life due to years of taking meds.

 

[Bidwell]

I suggest that you look up the postings of MATT who has posted on this forum quite often in the last couple of years.He had a very good experience at the Mayo Clinic and his postings describe the experience and the lead up in a lot of detail. I hope you can find them to read. Maybe he used MATT 72 or MATT 74 ... something like that. But for crying out loud, trying to feel better in daily life due to years of taking meds is a VERY WORTHY CAUSE! Good luck. Bidwell

 

[lindsayschu2]

I'll give a vote for high end med centers. After a lifetime of controlled epilepsy, I've had uncontrolled seizures for the past two years due to a head injury. I've been on the med switch merry go-round, and had worsening seizures and new seizure types, and very bad side effects on one of those meds. My neuro would not listen and couldn't figure out what was happening or how to control it. He finally said "I don't know where to go from here," and got off the phone, leaving me with no future path and non-stop seizures going on three days. I went to one of the most reputable epilepsy centers in the Western US. She and my GP working together determined that I was having serious electrolyte imbalances because of Topamax (I had been telling my previous GP that but he wouldn't listen, test regularly, and discouraged supplements), re-diagnosed my epilepsy syndrome (I have both focal and idiopathic), and re-directed my treatment accordingly. I am MUCH better--not fully controlled but much better. A lot of drs. know about epilepsy and meds, but not much about side effects and their management and how associated deficiencies can actually make seizures worse. The better the dr, the better the care and result. That's my two.

 

[Bidwell]

Thanks for this account which includes the worst and the best that physicians offer. Also you state what I am personally continually amazed by -- I mean my growing recognition that [many/most] doctors don't know much about side effects and their management and how associated deficiencies can actually make seizures worse. I recently had sedation for a procedure and a few days later, a seizure that resulted in head trauma. I am not a scientist and nobody will ever tell me since they themselves probably don't know [or care], but my bet is that the sedation and the medication did not mix and resulted in the seizure. Was there any way to prepare? Who's to say. Thanks again for the statement.

 

[lindsayschu2]

Bidwell, I'm really sorry about your experiences and frustrated for you!! I was on both Topamax and a high dose of a loop diuretic (Lasix), and not monitored for electrolytes--my high end med center dr told me that was absolutely a horrible combination for deficiency syndromes. Previous neuro said 'just eat a banana every day.' Even after stopping the diurectic and adding potassium and magnesium on my own I ended up with severe diarrhea (sorry) off and on for months, then status myoclonus, twitches, difficulty breathing, etc, until I ended up in the ER with clear potassium deficiency (they never tested for magnesium but that was probably off too). I'm with you--bad drs don't care enough or know enough about side effects. Even good ones don't necessarily, and I've started doing a lot of reading. I bought this ridiculously expensive medical text that talks about every mineral and vitamin and medication's effects on them, and their effects on each other, deficiency syndromes etc. Money well spent. But after 35 years of epilepsy the very good doctor has had the most knowledge and made the most difference in my care for sure, along with my awesome ex-Navy seal super hot GP (another story ) Dignan, low potassium isn't a super common side effect of Topamax either--but it happens to some people, so having a dr that knows more may help.

 

[Dignan]

lindsay,

Do you mind mentioning which E center in the Western US you went to that worked out so well for you? If not, maybe send me a PM.

Thanks!


BTW, I agree that the right docs make all the difference. I just got the feeling when I was on the phone with the people at JH that, although they seemed really professional, it was going to be a fairly typical, new doc, experience and it really turned me off spending my time and money on it since I began to doubt that I would learn anything new.

 

[lindsayschu2]

Anschutz at the University of Colorado Medical Center--they have a very well respected group of epileptologists, headed by Mark Spitz. He's known as one of the best neuros in the Western region and I know a few people who have gotten into see him but I'm not one of them. He books many months in the future. Some on here have had so so experiences, but they are very well respected and my experience has been top notch.

 

[Matthew74]

Dignan,

The post about my visit to the Mayo mentioned by Bidwell is here:

http://www.coping-with-epilepsy.com/forums/f22/report-part-i-visit-mayo-clinic-rochester-mn-23674/

(Thank's Bidwell!)

I have a few thoughts:

For a full work-up I wouldn't go anywhere but a major research hospital, or for anything major like brain surgery.

I highly recommend the Mayo in Rochester and John's Hopkins. The Mayo has the best, most thorough testing I have ever had. It's a whole different experience. I was seen at Hopkins as a child, and had a consultation there five or ten years ago. John's Hopkins has an adult ketogenic diet center.

If you go to top research hospital, it's true that the end result may be nothing new. But it will not be more of the same. The doctors there are the best in the world, and they see bazillions of the toughest cases. They are the most experienced and most knowledgeable. If anyone is going to be able to help you it will probably be at a place like the Mayo or Hopkins. Like Linda said, they find things other places miss. You will see for yourself.

It's totally worth it. I don't know what your insurance situation is, but you can almost certainly find a place to stay for a big discount, or even free. I know a place you should be able to stay free in Rochester, just blocks from the Mayo building. http://www.philoxeniahouse.org/ There are others like it anywhere near a major medical center. If you look you might also be able to get some assistance with travel expenses, since other people do that as well. Most hotels in the area will have a patient discount.

If you don't want to travel so far, you could try Houston. There seem to be at least two or three level 4 centers there.

Just personally, and totally subjectively, I actually enjoy going to a big medical center. It can be someplace on it's own like the Mayo or Hopkins, or a medical megalopolis like Boston or Houston. I spend so much of my life discouraged about my condition, but when I get the chance to go it's exciting to think that I'm doing something about it. Things do change.

 

[Cint]

Like Lindsay, I also go to Anschutz at the University of Colorado Medical Center and see an epileptologist. The dr. I see specializes in difficult to control patients and women. Twelve years ago,before moving back to CO, I was seeing an epileptologist who now resides and teaches at Boston University. She used to be on the National Board of the Epilepsy Foundation. So good docs don't all practice at Mayo or Hopkins. But the good ones do usually practice at Universities.

You can see who is in your area by looking here:
http://www.naec-epilepsy.org/find.htm

And a Level 3 or Level 4 Center:
http://www.naec-epilepsy.org/spec_care/guidelines.htm

 

[Nakamova]

I was initially treated at the Beth Israel in Boston. It's a high-end epilepsy center, and probably would be excellent for many folks, though it was only so-so for me. Since my epilepsy responds to meds, I was mostly interested in finding a neuro who knew a lot about side effects and might be open to alternative/complementary treatments. Though my Beth Israel neuro was generally nice she was also often defensive and dismissive. It was also often difficult to reach the office with scheduling or medication issues. Now I just go to see a neuro at a "lesser" hospital, and only when I need to get my rx renewed.

 

[valeriedl]

I don't know if it's necessarily the hospital you go to or if it's the doctor. You may go to a hospital with a big name but if the dr doesn't know things very well or listen and try to help you then it makes no difference.

I go to UPMC (University of Pittsburgh Medical Center) which is a teaching hospital and it's not too far from where I live. The neurologist that I started out with is there so that's why I go.

At first after I got my seizures somewhat under control I would see the nurse practitioner (who is one step down from a dr right?) every other visit. She was the biggest - I can't use the word on here! She listened to nothing I had to say and TOLD me what was wrong and why it was happening. She said that the only reason I was having seizures was because I wasn't taking my meds. Both my husband and mom were at the visit with me and all three of us said I take them as prescribed and on time. It was like it went in one ear and right out the other because she just kept insisting that I wasn't taking my meds. I went off in the office and never saw her again, she won't even look at me in the waiting room.

My neuro listens to me, asks questions and makes suggestions on what I should take or do. He always asks if I want to change meds or increase/decrease a dosage because it might change things in a good or bad way. He goes into description of what could happen and lets me decided in the end. I always laugh and say "Your the dr, what do you suggest? If it isn't working out then I can change." Nine times out of ten what he has suggested has worked.

He suggest I get a VNS implant. He let me know that it could not stop my seizures 100% and all the other things that came along with it. After I got the VNS it reduced my seizures in half. They aren't as bad they were before I got it and as long as I feel one coming on I can usually stop it before it goes into a complex partial or TC.

If I'm having a serious issue with things I'll get a phone call back pretty quickly and we'll discuss why it could be happening and what probably would be good to change because of it.

UPMC is a big name hospital in my area, I don't know if it is every where, but if I didn't have a dr like that there then it wouldn't be worth going there at all.

This is just my opinion though.

 

[Matthew74]

I agree that going to a big hospital does not guarantee a caring or effective doctor. Sometimes you will get Dr. "Smartypants", or Dr. "Highandmighty", who can't be bothered with mere mortals. And, it is also important to have someone you can get an appointment with quickly, who knows you, and is accessible. But, I would still encourage anyone who can be seen at a major research hospital to do so. If you get a bad doctor you can make an appointment with someone else there. Then they have ready access to all the same tests and your history, and you have established care there in case anything major comes up. Your doctors (Epileptologist, Neuropsychologist, and Surgeon, etc.) all know each other.

In the end, what really matters is your outcome and quality of life. You don't have to go someplace fancy for that. If your doctor is great, that's what matters. I'm not saying you HAVE to go, just that I think it is certainly worth the visit.

 

[Dignan]

I was initially treated at the Beth Israel in Boston. It's a high-end epilepsy center, and probably would be excellent for many folks, though it was only so-so for me. Since my epilepsy responds to meds, I was mostly interested in finding a neuro who knew a lot about side effects and might be open to alternative/complementary treatments. Though my Beth Israel neuro was generally nice she was also often defensive and dismissive. It was also often difficult to reach the office with scheduling or medication issues. Now I just go to see a neuro at a "lesser" hospital, and only when I need to get my rx renewed.

This is exactly what I was wondering about. I too have had issues with side effects and that is my number one concern, as I have been fortunate with seizure control on several meds.

If I could find one at a well respected research or university facility that ALSO was well versed in working through unusual side effects and alternative/complementary treatments and therapies that might help those effects without compromising seizure control, that would be my ideal.

 

[Belinda5000]

I've been treated at some of the best hospitals big deal MCG(medical college GA)(UAB) UniversityAlabama(Emory)In my own back yard and Montreal,Canada.
They all come to the same conclusion I'm a hard case.
It comes down to the neuro you have and mine was bound and determined get me controlled and it took 25 years of seeing him and he did not any fancy doc who didn'y have time for me.

 

[Bidwell]

Thanks, Belinda. I won't forget it!

 

[bandmom]

This is the question we are asking ourselves now, should we go back to the doctor we prefer, or stay with one at the hospital we think is more "high end"?

My daughter started out at University Hospital in Cleveland, a very reputable teaching hospital. But we were tempted to see what it was like at The Cleveland Clinic down the street because it was world-renowned and we thought it must be better. She's not been as happy with the two doctors she's seen at Cleveland Clinic so, despite feeling like it's the better hospital, she's just made an appointment at University with the doctor she liked better. We are very lucky to have these two hospitals a mere 40 minutes from home, so she'll probably be in good hands at either one.

 

[Bidwell]

And there is always the possibility that the right answer is "Both!"

 

[Belinda5000]

When I went to one doctor who put me on a med I took myself off it I was allergic to it , he said I wasn't and for some reason dr's don't think your allergic if you don't get a rash.I just itch like crazy.

 

[masterjen]

In my case I didn't have any success with medication (or even believed to really have seizures) until I went to a specialized center in a community other than my own. It happens that the neurologist (epileptologist) at this specialized center is the one that I prefer, so I continue to see this one rather than the general neurologist I was seeing originally. Having said that, though, it does come down to who the neurologist is. The initial neurologist I was seeing was supposedly the best in my community, but he didn't believe I was having seizures because I wasn't losing consciousness, was not suffering from TCs and only had seizures at night.
So, shorter version of an answer: yes, I do believe that at least a consult with an epilepsy specialist is warranted for anyone who cannot achieve adequate seizure control, has medication issues, etc.

 

[skyfire322]

I go to UPMC (University of Pittsburgh Medical Center) which is a teaching hospital and it's not too far from where I live. The neurologist that I started out with is there so that's why I go.

Agreed with UPMC. I live in a small town in VA, and my neurologist here was a nightmare to deal with. The closest epileptologist is in DC but I already knew the medical community in Pittsburgh so I decided to go to UPMC for a second opinion.

During my consultation, the doctor was pretty shocked at what I had told him so he ordered for blood work, a VEEG, and an MRI asap. You could tell even by his tone of voice that this was serious, and I was quite pleased.

When I started to have side effects from Depakote, I called and HE was the one who called me back the very same day. The neurologist's office here would never call me back unless I needed a prescription refill.

So long story short, I do agree that higher end hospitals and clinics are better. It may require a bit more in the way of traveling as well as some research on the doctors at said hospitals, but in the end it's definitely worth it.