Doctor recommending a second opinion?

[s10sleeper]

At my 2 most recent appointments at the epilepsy center, my doctors have brought up the idea of me getting a second opinion with another center to see what they think about the possibility of surgery. With my current center they had decided that resection was not an option which is why they went with the clinical trial. Here it is almost 3 years later and they are considering that I check with another center, as I have been through more than 10 different medications with no luck, tried the modified atkins diet and also the RNS clinical trial. The RNS seems to help, but not completely.

I am just wondering how common it is for specialty centers to recommend seeing another center. I know that insurance won't cover it, but if I have to go to another one I have heard good words about the Mayo clinic, plus wherever I go has to be familiar with the RNS.

Just don't know how they'll do an MRI as they can't do it with the implant.

 

[Endless]

Sleeper,

A second opinion is always a good idea, surgery or no surgery. I've found even the very best doctors have different opinions on the best way to handle things. Sometimes there is no right or wrong - just different. Then it's up to you to choose the course of action you think will have the best outcomes for you.

I've heard Mayo Clinic is great, too, also the Cleaveland Clinic. Some regional centers, like UCLA, I've also heard are great.

If you do go for a second opinion bring copies of all your test results (the actual lab results, not just the interpretations) and CDs of all your imaging. Also any chart notes from your docs. All this stuff takes a surprising amount of time to gather up - sometimes a month or more. My advice is to keep a copy of all of them for yourself, in case you need them again.

Do you have insurance that would cover most/all of a second opinion? Most health insurance will cover doctors and tests, but the travel costs are usually out-of-pocket.

 

[s10sleeper]

All I have for insurance is Kansas Medicaid, not many places out of state are willing to work with that as they have a bad rep I guess so it may be out of pocket.

As far as lab results go and all of the doctors info, that will never be a problem, the epilepsy center I go to is great about that, they are very quick in getting all of the information sent to other doctors, they even get my medication authorized faster than my local doctors do. Due to all of the tests that have had to be run, plus being in a clinical trial they have to be really on top of things, as they have to make sure everything is done properly, this is why I also have direct access to the doctors whenever needed and have their pager numbers for emergencys as they even have to speak with the ER if I ever have to go.

Anyways, what I am meaning is that I figure since they are the ones recommending it that they will be very swift about getting it all together. The last time I requested anything from them I got it the same day, even letters to notify the college why I was not able to stay in class.

I am worried though that I will have to go back through the week long eeg study, pet scan and Wada test, and the doc thinks they may want another MRI which may not be able to be done unless it is a matter of life or death, but if the center is familiar with the RNS they will understand.

My doctor told me that they think that a new MRI may show signs of more damage to my Hippocampus due to the sclerosis and the constant seizure activity at night.

I just never figured a Level 4 epilepsy center would recommend going to a different one.

 

[Cint]

Sleeper,

I see that your in Hays, Ks. Is the Level 4 Epilepsy Ctr. in Wichita or is there one in Hays?
Here's a list of other Level 3 & 4 Ctrs. in KS. and Nebraska.

http://www.naeclocator.org/locator/resultsbyzip.asp

I'm in Denver and go to UCHSC. Wouldn't Medicaid consider Denver or Omaha for treatment?
http://www.uch.edu/conditions/brain-nerves/epilepsy/

I have the VNS and had lobectomy surgery, so UCH is equipped for both of those, hopefully they are into the RNS, also. I can have an MRI, but my VNS has to be turned off while having it done, then turned back on after testing.

Sometimes having another opinion is a good thing. A new perspective. I wish you the best.

 

[s10sleeper]

Wichita is the only one in Kansas. Unfortunately there are only 21 centers that are involved in the RNS I believe, and the next nearest one is in Chicago. When I had the implant done I had to go to Indianapolis as not all of the centers are trained to do the depth electrode which I had to have one to get to the hippocampus.

I have thought about the center in Denver, as I know plenty of people in the area, but they aren't equipped for it. Who knows though, maybe they have a way to get around that.