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Changing Doctors
How often do we see our doctor for the first time and like them then but thereafter we find that is not for me. Vice versa occurs. I went to my epileptologist for the first time and couldn't stand her. She changed thereafter and became my favorite doctor because of how he has always worked with me in my plan of treatment. But that seems to be changing and so is she. She is so adamant that the VNS is an added form of medication and that it is a good one. But not all medications work for everyone. There is no proof that the VNS has never worked for me in the 21 years I have had it. She still insists the battery be replaced. The other week the nurse called that the doctor wanted me to go in to have the battery checked. I told her I must pay nearly $1,000 in copays to have the battery replaced. Have you seen a social worker? When was your lasts seizure? 2-3 months. Okay I'll tell the doctor this and have the assistant call and schedule an appointment. The secretary could somehow sense that I wanted to let the battery die and so she made no appointment. The nurse called the next day. I have never returned the call. This is too much unneeded stress. Fortunately my seizures have handled it. But for how long? I am most uncomfortable with using the VNS. She has added Zonisamide and it has miraculously decreased my seizures Because my MD has wanted me to be comfortable with my treatment if I tell her this she will back off. If not somehow I will have to tell her some sort of change is needed. I do not want to change doctors. My social worker will not get involved in this. She isn't knowledgeable about it either. You are the ones that have the knowledge and I respect your comments.
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@isittll
I thought this issue had been put to bed awhile back.
As you know it's your decision wether or not to replace the battery, not the doctors. Don't allow them to persuade you to do something your against. You have given the VNS 21 years to prove it's effectiveness which it hasn't done. If I were in your position I'd make it crystal clear to the doctor that the battery won't be replaced, period, end of story.
Have you considered removing the leads and coils or just letting the battery die?
Take care,
Jake
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2 ReactionsHi @isittll!
I very much agree with what @jakedduck1 has said. I have also to feel confident about the doctor's recommendation, that it is a good solution for me. Just to give you an example. In 2019, my current doctor at that time has introduced Vimpat, which had terrible side effects and affected very much my life quality. He wanted me to stay on Vimpat and was against replacing it. After 6 months, after feeling worse and worse and not controlling all my seizures, I went to see another doctor so as to have a second opinion. I changed doctors and medication. Very happy to have done it!
In my opinion, the relationship doctor-patient should be a partnership. If you do not feel that, I believe it is worth looking for another doctor.
Take good care of yourself.
Santosha
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2 ReactionsHello @jakedduck1
I wish this issue was resolved. The doctor recommended it be replaced before at her hospital. It's an out of network hospital with Cigna so I paid 100%. She still insists it be replaced at another hospital that I told her is in the network. Research has shown I must pay nearly $1,000 in copays to have it done there. The battery shall die and is probably dead if it was at a less than 10% level 8 months ago. She told me a friend has pacemakers with dead batteries inside her yet she is still alive so I will be okay. You said earlier that you wondered what her reasoning is that the VNS is an added medicine. My seizures are better with it at a low level. Yet they were more frequent at a higher level. The only difference is I wasn't on Zonisamide. I highly question her reasoning. My assertiveness is not always so good. The nurse practitioner told me today that my social worker should be able to help me with the assertiveness skills I should use with the doctor.
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1 ReactionHello @santosha!
I also feel the doctor patient relationship should be a partnership. The doctor has a way of being controlling in replacing the battery. She just says I think the battery should replaced I'll refer you to Dr. X rather than I think the battery should be replaced I'll refer you to X okay? I have considered another doctor but I do not like changing doctors. I have to have someone learn my whole history which is very complex and I don't want them to add any different medications.
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2 Reactions@lsittll
JUST SAY NO
Jake
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1 ReactionHello@jakedduck1
I see you liked my comment. I have a pretty good memory about all you said. I'm pretty sure I do.
Take care,
Laurie
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2 Reactions@Isittll
Wish I had your memory.
“No” is the only word you have to say, easy fast & definite. If she argues say my decision is final and this discussion is over. Or something like that. She is stressing you out which is doing more harm than good.
Jake
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1 ReactionHello @jakedduck1 I will call the nurse tomorrow and ask her to relay the message to my doctor that this is causing me unneeded stress. I will request an increase in the dose of my Zonisamide to offset the stress that this is causing. I will tell her to call the psychiatric nurse practitioner if she has any questions. The psychiatric nurse practitioner told me today to do this.
If an increased dose of Zonisamide would even create better control than a seizure every 2 or 3 months I could really prove the doctor wrong! Yoo Hoo!
Take care,
Laurie
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2 Reactions@lsittll
Hi Laurie, Good Morning
I just saw your exchange of messages with @jakedduck1. Great, say NO, calling the nurse today and saying this is your decision and all that is causing all too much stress to you. Hope all goes well and that your doctor finally listens to you.
I very much understand the challenges of changing doctors, especially after he or she has been with you for many years, and knows all your story. But also staying in a relationship that is no longer working well, is also not worthwhile. For me, it is the same as keeping a marriage just for the sake of the marriage.
All the best today and continue to take care of you!
Great weekend @lsittll and @jakedduck1
Santosha
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3 Reactions@lsittll
Hi Laurie, Good Morning
I have just watched this video S.T.E.P.S. - A Discussion Guide for Patients With Epilepsy and Their Doctors on STEPS video library. I remembered you!
https://www.stepstowardzero.com/#why-steps
As shown through a survey, there is a clear disconnect in the conversations people are having with their doctors.
Have a nice weekend!
Santosha
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2 Reactions