Doctors and believing you can get better

[Matthew74]

After years of angst I think I finally figured out why I'm so frustrated with doctors. I don't mean what it is they do or don't do that I don't like (like not listening, etc.). I think the root cause is that I believe my quality of life could be greatly improved, but they don't. I have good reasons for believing I could get better, because I have been better. I know I'll never be totally "normal" or perfectly "healthy", but I don't put any limit on what I think is possible. The doctors on the other hand, seem to give up so easily. Sometimes when I see one for the first time they seem energetic and positive, like "We're going to take care of you right away.", but when they realize things aren't going to be so easy or simple they give up, reduce their expectations to zero, and go into long term maintenance mode like, "Keep taking the same meds and see me in six months." So, I realize now that I'm actually at cross purposes with them. I want to get better, they don't believe I will and just want me to not get worse, which is no different than wanting me to stay the same. Of course they would prefer that I get better, but that's not what their treatment is meant to accomplish. They want to manage my condition, I want to overcome it. The result is that, unless I find someone who believes in me, I will always feel frustrated and even betrayed, because they are unintentionally undermining the whole reason I want treatment - to get better. They're not bad people, but we are trying to accomplish two different things.

 

[Cint]

Well said and :agree:. I was in for my six months check-up last week and my neuro told me she was going to be taking a yearly sabbatical. Then she paused, looked at me and asked, "You know what a sabbatical is?" I felt so insulted and wanted to kick her. She seems to compare me with some of her other patients that will not get any better. I felt like telling her "good riddance!"

 

[lindsayschu2]

Cint you see that doctor with the long name at Anschutz don't you? Do you know who your backup dr will be while she is off at that 'what is that thing again? Sa-bba-ti-cal??" I hope you get paired with Dr. Drees--she is great and looked at my case with very fresh eyes and mind toward "we are going to fix this or do our best trying." Maybe her year off will be a good thing. Matthew maybe another second opinion would help? Second opinion doctors seem to come at things with the idea you are looking to them to fix the problem and find things others missed, and maybe that would help? Just a thought though I'm sure you've seen your fair share already.

 

[Matthew74]

I didn't know doctors got sabbaticals!

Linda, since you brought it up, I am going to see if I can make a visit to the Cleveland Clinic. I'm thinking about surgery seriously for the first time. I need a referral for insurance purposes, don't have a GP, and I'm afraid to ask my epileptologist at the Mayo for one. The doctors at the Mayo seem to have a problem with that. It's silly, but I've had issues. I'm actually reasonably happy with my epileptologist, but things are starting to drag on. I have an appointment Monday, and will discus seeing a surgeon at the Mayo, then go from there. I wanted my epileptologist to set up an appointment with a surgeon Monday, but it hasn't been done yet.

 

[Belinda5000]

I've seen 2nd opinions,3rd opinions and so on and so forth.

I refuse to just blindly take meds. I will refuse to increase meds, and have done it in the past. My neuro will listen to me and what I say about what's happening with my seizures. He takes several vacations a year but he deserves it.

 

[Cint]

Cint you see that doctor with the long name at Anschutz don't you? Do you know who your backup dr will be while she is off at that 'what is that thing again? Sa-bba-ti-cal??" I hope you get paired with Dr. Drees--she is great and looked at my case with very fresh eyes and mind toward "we are going to fix this or do our best trying." Maybe her year off will be a good thing. Matthew maybe another second opinion would help? Second opinion doctors seem to come at things with the idea you are looking to them to fix the problem and find things others missed, and maybe that would help? Just a thought though I'm sure you've seen your fair share already.

Lindsay,

I DO go to Anschutz, but I see Dr. Strom. She didn't refer me to Dr. Drees, tho. I'll have to look into that. Thanks.

I agree with you.... getting a 2nd opinion is always good. Sometimes 3, maybe 4 opinions is what it takes.

 

[masterjen]

I agree with you.... getting a 2nd opinion is always good. Sometimes 3, maybe 4 opinions is what it takes.

Agreed. It wasn't until my 3rd that I had someone with the right knowledge and who was willing to put in the time to really piece together what was causing the seizures. This in turn led to referral to geneticists and others, which in turn led to condition specific-treatment that for my case treats the reason for the seizures, rather than just trying to reduce/stop them (and not very successfully) with the more typical seizure medications.

 

[Matthew74]

Thanks for the encouragement. I've been to lots of doctors, including a number of epileptologists. I have yet to see one who really helps me out. They all seem more or less interchangeable professionally. At this point though I don't have much to loose with surgery. It may be that surgery is sophisticated enough that it might be an acceptable risk. They have some promising looking techniques at the Cleveland Clinic, which might suit my situation.

My spine doctor (my latest drama) actually refused to give me a referral for a second opinion! I have a well documented condition, and went through with several things they suggested. I couldn't believe it. I am seeing someone else in March, I just hope it's not too late to finish school.

I guess you just have to keep trying.

 

[giveasmile]

I guess you just have to keep trying.

Yes, it's good to stay positive and keep trying but take breaks in between tries for sanity's sake.

I feel exactly the way you do-- and not restricted to the field of Neurology.

 

[valeriedl]

Even though it's frustrating you may want to consider seeing another dr, or more, to get one that will work good with your son.

I really like my neuro. If he sees or I say that I'm having problems with my meds or if they might not be working he's always willing to make changes. He will make the decision right away it's not a 'Lets give it another few months to see how it goes with this med'.

If he wants to make any sort of change to my meds he always suggests it to me before hand just to make sure it's ok. It's not a "We're going to do this" . My husband usually laugh and tell him that it's his idea and he's the dr so if he thinks things might work better then we'll do it.

I would see his nurse practitioner every so often and she wasn't willing to make any sort of changes to my meds. She would just make excuses as to why any of the meds I was on weren't working. Her favorites were that I wasn't taking them, taking the wrong dose or that I wasn't taking them on time. I told her that I was doing all of those things and she didn't believe me. I blew up in the office about her and haven't seen her since I did that.

I had serious problems with my back a few years ago. I know I went through at least 5 doctors before I found one who took the time to work with me and he found out what was wrong and I had to have surgery. All the other drs just gave me pain pills and that was it.

 

[bandmom]

Matthew, we've had the same feeling about one of my daughter's epileptologists: all positive and energetic at first then he seemed to give up. The last appointment she had with him she told him she was having almost daily partial seizures and he said he felt he should do nothing different and just "let things sort themselves out."

A few months later we saw him speak in front of a group where he said how important it is not to "settle" but to keep trying for zero seizures and zero side effects. She decided he was a hypocrite and changed doctors at that point.

My daughter has been to the Cleveland Clinic. It's a great place to be if you're thinking about surgery. She was told she's a candidate for surgery but isn't ready to take that step right now so she's currently gone back to a previous doctor she liked a lot at a different hospital. If she does consider surgery in the future we'll go back to the Clinic.

I'm all for 2nd and 3rd opinions, or more. We learn something new from each doctor and wonder why didn't anyone tell us that before.

 

[Nakamova]

The first neuro I saw was generally a nice person, but I eventually stopped seeing her because her attitude wasn't collaborative or positive. When I didn't go all the way up to the the higher dose of meds she was recommending she got upset and said that I would have a seizure if I didn't. I reminded her of my history of being responsive to lower-than-average doses, and I also said that I made my decision carefully and was well aware of the risks. She kept saying "when you have a seizure..." and I kept correcting her and saying "if I have a seizure...". She wasn't able to listen to me, and she wasn't even able to sincerely wish me well with my decision. (And I have been seizure-free -- going on 7 years -- at the lower dose.)

 

[AlohaBird]

"We're going to do this".

Doncha just love it when they do that first person plural thing? WE are not going to be taking that higher dose with all the side effects and long term damage to the body. That's ME, Kemosabe.

 

[bandmom]

The first neuro I saw was generally a nice person, but I eventually stopped seeing her because her attitude wasn't collaborative or positive. When I didn't go all the way up to the the higher dose of meds she was recommending she got upset and said that I would have a seizure if I didn't. I reminded her of my history of being responsive to lower-than-average doses, and I also said that I made my decision carefully and was well aware of the risks. She kept saying "when you have a seizure..." and I kept correcting her and saying "if I have a seizure...". She wasn't able to listen to me, and she wasn't even able to sincerely wish me well with my decision. (And I have been seizure-free -- going on 7 years -- at the lower dose.)

Nakamova, I've wondered if too high of a dose can sometimes result in more seizures than being on a lower dose. That seemed to be the case for my daughter but when we asked the doctor she said that's not possible. It's good to hear you've been seizure-free so long at the lower dose, but so frustrating that doctors sometimes won't listen and accept that we might be right about something.

 

[Nakamova]

Not every med is the right fit for an individual,* and some can have paradoxical reactions. I know some CWE members have found that a new medication or a higher dose has made their seizures worse. It can definitely happen, and the best way to keep the doctors on their toes is to keep detailed notes about that happens when.

*Not every neurologist is the right fit for an individual either.

 

[skyfire322]

The first neuro I saw was generally a nice person, but I eventually stopped seeing her because her attitude wasn't collaborative or positive. When I didn't go all the way up to the the higher dose of meds she was recommending she got upset and said that I would have a seizure if I didn't. I reminded her of my history of being responsive to lower-than-average doses, and I also said that I made my decision carefully and was well aware of the risks. She kept saying "when you have a seizure..." and I kept correcting her and saying "if I have a seizure...". She wasn't able to listen to me, and she wasn't even able to sincerely wish me well with my decision. (And I have been seizure-free -- going on 7 years -- at the lower dose.)

Almost the same thing happened to me as well. Mine wouldn't even listen to me if I brought up different medicines that could possibly help. He would always say "It may work, but I believe that this is the best medicine", even though he was well aware that I was still having countless amounts of episodes.

He too was a nice person. Heck, when I saw him at the local auto store, he came up to me asking advice on what to get since he knew I love fixing cars (quite therapeutic since I can't drive).

When I got the second opinion, right off the bat, he wanted to know what my entire history was, what types I had, how many I had each day... A barrage of questions in such a short amount of time really hurts my brain :roflmao:

He was a little blunt at first (I appreciated his honesty) but he actually listened to my suggestions. He told me what MIGHT happen side effect wise, etc. and if it didn't help control my seizures, we'd try something else. He even calls every once in a while to check up since he knows I live in a different state.

I guess in the end, and I know this may sound weird, I'd rather have a blunt and honest doctor rather than a having nice, smooth talking doctor that blows me off.

 

[Nakamova]

I'd rather have a blunt and honest doctor rather than a having nice, smooth talking doctor that blows me off.

:agree:

 

[Cint]

I also agree. Even tho this type of dr. may seem rather direct and blunt at first, it does feel great to know someone IS listening.