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The waning doctor? Not understanding how I feel.
Epilepsy & Seizures | Last Active: Oct 27, 2021 | Replies (32)Comment receiving replies
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.
Replies to "How often do we see our doctor for the first time and like them then but..."
Hi @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
@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
@is
Hello @sanatosha!
The doctor will soon be in the dumpster. I cannot believe a doctor whom I have seen for 19 years can end up like this. She's definitely not worth out-of-network fees. I had a visit with my psychiatric nurse practitioner today. I told her she had no clues but said someone shoulc have been on call that day and that my call should have been returned. Hurray! That made my day.
Thank you for listening.
Have a nice holiday!
Laurie
I am having issues with my doctor and his pa. She told me to take Tylenol for neuropathy and I thought my legs were going to burn off my body. I’m discouraged with how she has been so negative about my issues. Everyone says it’s depression and put me on gabapentin and quetiapine with Keppra and Cymbalta and clonazepam. Everything is affecting my GERD and making my neuropathy worse.
what do you have to do to make an appointment at mayo clinic in jacksonville,florida
Hello,
I am new to this blog; however I have a 26 yr old daughter with complex seizure issues among other dx's. After reading the other messages regarding changing doctors has scared me to death. First, I have to say everything said, I definitely relate to...and I find that extremely concerning. She has been with her current Dr. for several years, but something has changed and my gut is telling me to change Dr.'s. That said, sometimes I feel the loyalty keeps pulling me back somehow. I have been trying real hard not to take things personal but that's not working. I'm stating to get super pissed off and I don't want to go there. Mayo Clinic Rochester Neurology department and comprehensive epilepsy unit is supposed to be ranked #1. I feel medically abandoned, dismissed and clearly there is a serious communication disconnect across the board. I'm not sure whats going on but I absolutely will not tolerate dealing with a toxic environment. My goal is to change Dr.s peacefully and move on, however I am not getting any return phone calls or return portal messages. So if anyone has any suggestions I would greatly appreciate some guidance. My daughter deserves better standard of care then she is receiving. Thanks and I look forward to some positive feedback
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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