My visit with the Neurologist today regarding my Episodes

[Braveheart]

Hello Friends,

Well I thought I would let you know how my appointment went this morning with the Neurologist. Please forgive me if I sound negative, angry and depressed, but this is how I am feeling right now.

After waiting 45mins to see the Neurologist, I eventually got seen. He asked me how I was and I explained that I had been unwell with two recent episodes, with the one last Monday being particularly frightening. I explained how my vision in my left eye completely grayed out as it did last year. He then went on to explain that he thinks it was a visual migraine!! Well I told him in no uncertain terms that I disagree with him. I explained that I suffer from migraine too and that I know the difference. He was quite defensive and explained that he is a World expert on Migraine (something I never knew before).

I had printed off all the replies I have received on valvereplacement.com and when I went to show him and explain that I am not alone in experiencing these, he made it very clear that he was not interested. He said I am being very anxious about things, I said "who wouldn't be anxious and upset with these episodes". He said perhaps counselling or drugs (such as Valium) would help deal with this. I was furious!! Cant you believe it! I could have cried there and then. I got the distinct impression he was pushing me to one side. He said "I've been seeing you for a year now and we have investigated you extensively, but cannot find a definitive cause for these episodes". Yet, following my MRI last year I was told I have lessions on the brain showing previous TIA and that's why he put me on Diprydimole to stop the blood platelets sticking together!! I was also told I had a kink in one of my Carotids. An ultrasound was performed and I was told the flow was normal! I honestly don't know what's truth and not anymore. I think he's sick of me because he thought it was TIA and put me on a drug and now I'm getting further episodes he's not sure what the hell it is.

My Cardiologist told me last Friday that he had dicussed me with the Neurologist and when I mentioned this today, the Neurologist said he couldn't remember what was said!! He said he has no objection to me seeking a 2nd opinion if I wish and he will supply me with a letter detailing what investigations I have had. What should I do?? I am not imagining these epsiodes and they ARE NOT MIGRAINE!! And I hate doctors this afternoon!!

I'm both frustrated and upset as I type this posting to you.

Perhaps I should just drop the whole thing. I'm sick of it all and not being taken seriously.

All these tests, consultations etc have been done privately, God help anyone in my country who is dependant on the National Health Service.

I also tried to explain how these weird happenings have only ever been present since my valve replacement. He said that's just a coincidence and that had it not been for my heart history they would have suspected it to be migraine from the start. He said I'm fixated with them being caused because of my valve surgery.

Oh God I can't tell you how angry and upset I am. But, right now I keep thinking of all the families involved with the NYC disaster. My heart goes out to them.

God Bless,

Jonathan

 

[LUVMyBirman]

Hi Johnatan,

We are behind you 100% and feel your frustrations as they were our own. Some of us here, including myself have had similar symptoms. You are not alone.

Will say it again, the sad thing is "this is not medically documented as an issue with prosthetic valve patients". They need someone in the medical community to recognize that this is a real concern.

I will be praying for you.

As for the valium, maybe your doctor should take it so he can slow down enough to treat his patients! Believe me... I am as frustrated as you!

Please take care and feel free to write anytime.
Gina

 

[Bob Gleason]

Jonathan

Jonathan

I, as you know, have similar symptoms......almost daily I feel a sense of imbalance and dizziness and numbness in my face, lips, extremities and pain in my left side. Ocassionally, there are vision problems........not complete loss of vision, but a blurring and my vision becomes distorted. At night I get head shakes and similar shakes in my left leg. I have been noticed as walking with a limp.

I continue my testing. i know that I am having TIAs......no one wants to confirm this to me.

I have placed myself on a Medical Leave of Absence from my place of employment and am now on short-term disability. My cardiologist has recommended this and is supporting my claim. My superiors have been wonderful and have recognized and provided similar support.

I was scheduled to go back to Columbia in NYC (first on Tuesday, then on Wednesday) but have postponed this in light of what has happened in NYC.

I may have retired myself and this disturbs me as I have some wonderful clients who have become my friends over these last 15 years or so. This has devastated me emotionally and I remain frustrated with these symptoms that no one can seem to diagnose. I know I am not the same since my surgery.

Jonathan, I wish you well and know what you are feeling.....I did not intent to use your thread as a platform for myself. As I have said in the past, I never believe or say that I am cured or repaired.....just modified. Heart disease remains in some shape or form or symptom and I, like you and others, must manage as best as we can with all the resources and support we can secure for ourselves.

As I write this, I can hear my valve banging against my chest and I can feel the discomfort I feel almost every waking hour of my "new life". I have difficulty adapting to this as well as the frequent symptoms that I mentioned above. I know just a short time ago I was feeling physically and emotionally well, never ill a day in my life, always thinking how strong I am and able to do things that those much younger than me can do. (Hank......like whipping your butt in basketball!)

But I will maintain my focus of getting this resolved, whatever it takes and however long it takes.

 

[Nancy]

Jonathan and Bob-

If you remember, I mentioned that my husband Joe had many, many TIAs of all different types. He saw a couple of Neurologists. For some reason, the field of Neurology has been the most disappointing field of medicine that we have dealt with. Can't answer why, just that this has been our experience. Maybe TIAs are so mysterious. You almost have to catch them "in the act", so to speak.

The first neurologist we saw was a young man with an enormous attitude. I usually interpret this as being unsure of himself, or scared of my husband's condition. He gave us the old "don't have a clue" answers. So we gave him the heave-ho.

The next one was less than good.

The last one we saw, not only took the condition seriously, but was able to determine by the symptoms where in the brain the TIAs had happened. He spent lots of time with Joe and explained lots of things to us. He's the one that prescribed the Plavix. Joe is no longer on it, but it has helped lots of people.

Joe's eye doctor was quite concerned that these episodes get under control. He thought that too many "hits" on the optic nerve or eye vessels would cause permanent damage. So it's important to pursue this as far as you can.

I guess, if at first you don't succeed with your treatments, can the doc and seek another who knows what he's doing. Not every doctor graduated in the top of the class!