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happygirl

Please help me

Hi Everyone,

I am thinking of changing my name to sad gir!!

I saw my neurologist today. 6 months after my operation, and I think that I have had two seizures (absence seizures so never sure). He keeps on going two and fro in terms of how to manage my medicine dosage.

One minute he says - stay as you are and lets reassess in 3 months, and then as soon as I get upset and say that I was really hoping that I could go down because of the affects it has on me - he says - ok go down.

How do you know when the right time is? Is there a set of standard "rules" they follow. i.e. after x months seizure free, or xxxxxx.

Should the patient be changing the decision making process that they make or should they say to the patient that this is the best decision for now as much as you don't like because......

It is like me saying to a child where I can say to them "don't cross the road unless you a traffic light" and then if they get upset turn around and say "ok cross the road whereever"

I feel I am going mad!! Maybe I am the one that is not understanding and confused. Please help

Comments

Re: Please help me

My son (9yrs) has been having seizures all of his life, he has a wonderful neuroligist.....if you don't feel like you are getting the best results with the dr you have, then, I would suggest you find another one, it took us 2 different neuroligist before we found one that was the best for us........I hope the best for you, can I ask what type of surgery you had done...my son had a hemi done in August

Re: Please help me

Thanks to both of you for the time you took responding to my post. At this stage, it appears that I have to stick with my current neurologist due to the fact that he is connected with my neurosurgeon at the epilepsy clinic I go to. I will then try and find someone else

It is amazing that I am emotionally fine before I go there, and once I am done with him I am back to being an emotionally wreck. Even though I was not upset, they got me to speak to a support person with regards to how I was feeling and of course by the time you are done with that, I am emotional and a wreck. All I want to do is: go there, get medical advice from an expert and leave. But somehow they drag you into the conversation as to how you feeling even though they not social workers. I think I may have myself in trouble, cause I told her yesterday that I wanted to feel as though there was a plan in place which is obviously subject to change depending on if I have seizures, but a general plan would be nice. They were not happy at that.

I had left temporal lobe surgery. At the moment (in my dark moment) I am regretting it. My seizures were of the kind that I would blank out for maybe 2 minutes and had to rely on people telling me. It effected my work, concentration and memory. Apparently my conceneration and memory will still be bad, the only good thing that is that hopefully seizures will stop and medication can be reduced which will stop you being so tired.

This only started 4 years ago - so I feel like I have gone from being very successful workwise to being told that my concentration levels are affecting my work too much and it is is time to part"

Please let me know what hemi surgery is if you don't mind. Not sure I have heard of. How is your son doing, have his seizures stopped, and what is happening with him and his medication

Take care to both of you from Australia

 

Re: Please help me

Unbelieveable! It sounds to me like your Neuro is telling you what you want to hear, not what he thinks should be done professionally. For him to be so wishy/washy is unprofessional. He should be guiding you, not send you here, there and everywhere. I agree with Katrina - see another Neuro if you can.

I understand your frustrations - I've seen a few myself. It's sad some Dr's become so complacent and forget "1st, do no harm". In some cases, they get too busy and we become just another number. I hope things get better for you sweetie. I found a great Dr recommended by this site. You may want to look around for Epilepsy clinics near you and/or those Dr's registered with Epilepsy foundation. Take care!

God bless you!

Angela Sanders