Changing Doctors

Posted by lsittll @lsittll, Oct 26, 2021

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.

Interested in more discussions like this? Go to the Epilepsy & Seizures group.

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

REPLY
@terik

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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@terik Frankly, you have been abandoned. Doctors as well as teachers and bus drivers have a tendency to move on or be detached. Happens to all of us. First, accept that fact. Second, keep reading the internet, especially these pages. Third, ask at places like church, or school, or Masonic, etc.
I am having the same thing. I have many AI diseases, and I am learning to put together a team of several specialists. It's about the only thing left. oldkarl

REPLY
@terik

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

Jump to this post

Hi @terik
It took me a while to find my epileptologist, but it was worthwhile the battle. I also have complex partial seizures (Temporal Lobe Epilepsy).
I was referred to my current epileptologist by a neurosurgeon who was referred to me by a mother with a son with epilepsy. Referrals work very well here in Brazil (I live in São Paulo city)! Unfortunately, I can not help you with referrals to a good epileptologist in the States. Perhaps your family doctor could be helpful? Have you tried to contact the Epilepsy Foundation in the States? This is a great foundation that could help you. Perhaps there are other people here in our group living in the same region that could refer you to a good doctor. In what region/city do you live?
All the best!
Santosha

REPLY
@santosha

Hi @terik
It took me a while to find my epileptologist, but it was worthwhile the battle. I also have complex partial seizures (Temporal Lobe Epilepsy).
I was referred to my current epileptologist by a neurosurgeon who was referred to me by a mother with a son with epilepsy. Referrals work very well here in Brazil (I live in São Paulo city)! Unfortunately, I can not help you with referrals to a good epileptologist in the States. Perhaps your family doctor could be helpful? Have you tried to contact the Epilepsy Foundation in the States? This is a great foundation that could help you. Perhaps there are other people here in our group living in the same region that could refer you to a good doctor. In what region/city do you live?
All the best!
Santosha

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Thank you Santosha… so is epileptologist part of Mayo Clinic?

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@terik

Thank you Santosha… so is epileptologist part of Mayo Clinic?

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Hi @terik. No, my epileptologist is based here in São Paulo, Brazil. If you wish, I could ask him if he could recommend an epileptologist in the States. Would you like me to ask him?

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