I was just curious how people feel about their particular Neurologists. I've seen about 4 or 5 in the past 15 years or so and only ever cared for the very first one I had. I respected him and his opinions because he respected mine - and my choice to not have surgery. He always wanted to know what, if any, side effects I was having from the Dilantin and how I was feeling in general.
I respected that about him because to me it showed he was interested in knowing how people ACTUALLY did on the drugs they were given and how they were effected by them. He didn't just take what he'd learned in medical school and read in a drug manufacturer's brief about their drug as Gospel. He wanted to know the truth of how people tolerated their drugs and their neuro illnesses. If there were problems, he had solutions or at least suggestions.
That neuro retired suddenly after I'd seen him for a couple of years, do to his own poor health. I saw someone in his office for a while and then moved to a new area and ended up eventually just not seeing a neuro at all for many years because none of them I ever felt were worth a damn.
With the absolute worst ever being one I saw about 6 months ago - one of only 3 in my area. Who during my office visit seemed so out of sorts I'd swear he was on some sort of drug. He couldn't even raise his arm to point at the CT. He never returned my calls when I had problems, so I dropped him pretty quickly.
Point is, though his behavior and negligence were extreme, his uselessness was pretty much on par with all of the others I'd ever seen - with the exception of the first. I don't see that neuros really DO anything. Wondering if that's the experience of others in the group or if any of you have great neuros whom you like and trust and feel actually are concerned with your well being?
I actually really like my neurologist. He dumped me on my last visit though because basically there was nothing else he could do for me. That made me sad. He was funny and we both enjoyed each other's sense of humor. I'll have to creae some new symptoms so that I can go back to see him!
I absolutely loved my neurosurgeon too! He's the doctor I wish I could see for everything, including a cold.
It is hard finding doctors whom you trust and that are dependable. Don't stop trying though. I'm sure you'll find another that you like.
Hi Jason, I too have come across the same issue. :(
In my experience as a neuro pt. of 24 yrs., it unfortunately seems that rural, small-town/city neurologists have little to no experience (& seemingly no interest) w/vascular malformation pts. which is very frustrating & scary, yet I've learned through this experience to be my own advocate & go outside my geographical area for opinions, film reviews, etc.
If possible, maybe try another neuro???
I couldn't agree with you more. I am on my second neurologist at present, for pain management.(migraine headaches) The first one I percieved to have an attitude and we basically butted heads. Lets just say we didn't get along at all. I was somewhat concerned about using a neurologist from the same group (Semmes Murphey Clinic), and I spoke with my neurosurgeon in detail about my concerns.
To make a long story short, my neurosurgeon understood and asked if I would like another appointment with another neurologist,...I said YES.
My neurologist now, is a very understanding and compassionate physician. I cannot speak more highly of him and his professional mannor. He listened to my concerns, asked a few short questions and sat back and listened to my explainations. The appointment lasted for about 1/2 hour and needless to say I was thoroughly impressed and very satisfied with him, and his advice on treatments. (I did most of the talking while he listened)
Jason,...to quote an ol' addage,..."ya gotta shovel a lotta' coal,...'afore ya' find that diamond". In any profession,...there are the good ones,...the bad ones and the exceptions,...a very true professional.
Hi Jason, In addition to finding the best neuro or HCP for you, as a suggestion you might direct your experience(s) to the following assoc's. @ http://www.aneuroa.org/i4a/pages/index.cfm?pageid=1 http://www.aan.com/
as well as to the neurology depts. @ medical teaching universities near your region.
Hope this helps! :)
Hello and Welcome I love my pain neurologist who does seem to listen and not treat me like a cookie cutter patient. She takes her time with me and answers my questions and if she can not she gets back to me. She is at Stanford Redwood City office her name is Dr. Barab. Its odd since my angiogram and embolism I can not seem to tolerate any pain meds. But a recent nerve block has been helping with my pain.
For my recent angiogram and embolism Dr. Marks was great but the younger doctor was cocky and was not very helpful. He was also discounting what Dr. Marks said which of course Dr. Marks was correct. Dr. Marks is at Stanford. I know there are also great AVM doctors at USCF. I think you could also try US Davis if that is closer to you to find a Neuro who will listen to you. I agree with you about the drug companies and what they tell the doctors. I ended up with five blood clots in my brain last year due to a drug.
Are you having any pain?
Angela
Well I have a head ache at the moment but that's because I had a seizure this morning. I have about 2 a year. Which, while not great, is tolerable to me. And prefferable over adding more meds that may stop the seizures completely - but also greatly reduce the quality of life for me. And with a 6 and 7 year old son and daughter (respectively), whom I home school, I have responsibilties to them and don't want their memories of me to be ones where I was just 'out of it" all the time. I mean I have those times enough as it is now, but they were far worse the times I've tried additional meds.
When I first moved up to the Redding, CA area where I now live in a nearby city - I'd seen a Neuro who actually WAS very nice. I didn;t always agree with his opinions, but he was a decent guy. He ended up leaving the area a year or so later. One of the last things he and I talked about was me just getting my Dilantin from my regular GP at the time. Because I wasn't seeking surgery and there wasn't a lot for him or any Neuro do really do for me.
So that's kind of been my philosophy ever since. If I did seen another one I'd actually prefer it was woman. I guess having been raised by a single mom and having a sister, I've spent a lot more time in my life around women than other men. So, I'm actually more comfortable with a woman Dr.
If I may ask, what was the drug(s) that caused the blood clots in your brain? Is the pain you're having in your head or throughout your body? Oh and thank you for the reply, too. I really appreciate it.
LOL I like your expression about the shoveling. I think it's great you've found a neuro you like and trust. Currently I don't have one - even though I did promise my new Internist Dr. I'd find one. She;s fine with Rx-ing me my Dilantin but just would like to have a Neuro I could call if I ever have any problems with it or want to change the dosage again.
And, for whatever it's worth, I did TRY to keep my promise to her. After my horrible expereince with the one who seemed a little medicated and didn;t return my calls when I became suicidal when adding Keppra to the Dilantin - I dropped him and made an appt. with the second of the three Neuros in the city here.
They made me an appt. for Jan. 2 this year @ 8:45am. When I arrived the office was still closed for the holidays. I haven't called them back to reschedule.
I did however call the third and final Neuros office and asked if I could make an appt to just see and meet him and then decide if I wanted to be a patient of his. The woman in his offuice got very rude on the phone and told me, "No we don't do that. You're either a patient or you're not. We don't make appts. for you to come in and shake his hand".
I told her then that I had no intent of shaking his hand at all. But to be honest the internet reviews of him say flat out that he's a jerk! And I was hoping to give him the benefit of the doubt and meet him for myself. She still said "No".
From where I live A city called Chico is about an hour away and Sacramento about 2 and a half hours away. They're doable trips probably but since sept. I've been having really serious anxiety attacks so I'm not going to either city anytime soon. And that's fine with me for the time being. I don;t want AVM surgery. And, God Forbid (please!) if I ever HAVE to I'd be in the ER from a problem and THEY can find me a Neuro. lol TY for the reply!
I had a similar situation when I first moved to the area I now live in. The Neuro I saw was decent, I didn't always agree with him but he was a good guy. After about a year he told me there wasn't really anything he could do for me since I wasn't seeking surgery. And I could get my Dilantin from my GP.
We parted on good terms though and about a year later he ended up moving out of town anyway.
Amen to that, Patti! As for the time being, I'm fine not having a Neuro at all. I was just really curious about everyone's experiences. And your's sounds the same as mine. I'm thrilled to hear you've become your own advocate and that you DON'T settle for substandard care!
Reading everyone's experiences reminds me of when I recently switched Drs. from a GP who seemed to have next to NO medical knoledge about anything - to an Internist, who's a lot better in many ways. When I told her about my experience with the neuro I mentioned above whom I'd wanted to meet and then decide if I liked him. She told me, "Yeah, that's not a good idea. It makes it seem like you're shopping for Drs. Not a good way to make a first impression".
I told her directly - I don't care what kind of impression it makes. i AM shopping for Drs! I shop around when I buy a car - you really think I'm not going to shop around and find the best Drs I can to take care of my Life and well being?"
Granted, not the best way to make a first impression with her - but I think she and I've moved past that. I just think that fi Drs DID have to contend with patience shopping around for them, instead of having both this sense of entitlment and indifference, maybe they'd be a whole lot better than they are.
Sorry to hear that you had a seizure this morning. Have you heard of Ketogenic diet http://www.webmd.com/epilepsy/ketogenic-diet-for-epilepsy
I first heard of it from my neighbor who is an epileptic neuro surgeon at UCSF and he took my first cats sons anyway I adopted a kitten who had a bunch of trauma and was having seizures. We keep him on a high protein no grain diet and give him Kerry gold (grass fed butter) He is on medication but we were able to reduce his meds.
Before I had my stroke due to the blood clots I was doing paleo diet I have switched to Bee's Diet which is mainly protein good animal fats such as olive oil organic coconut oil which you can get on Amazon. http://www.healingnaturallybybee.com/articles/weight1.php
Mainly staying away from sugar starches and carbs since my stroke and I believe it has helped me with my stroke . I still have phantom pain in my left knee and hamstring but I just started to take turmeric with my pain neuro ok - its supposed to help with inflammation pain and digestive issues.
Before my stroke the doctors think I was having seizures cause I was losing time and so they put me on topomax for two months but it made me sleep all the time where my husband had to wake me to eat or take meds. Then they switched me to gabapentin which I am still on and dont seem to have any side effects.
Before my stroke I was taking k2 to help with early bone loss and I had been put on a drug called danazol. The doctors still are not 100& sure but it was the only new thing I was taking and I had been on it for three months and the K2 for a year but I forgot about the K2 until last week so my doctors dont even know but I see them in a week. I took all the genetic blood testing to see if I just clot and it all turned out negatuve, The blood thinners made my head pain worse. I had to go off for the genetic testing and then I started to hear the whooshing sound all the time and then was diagnosed with a fistula on my left side brain. I had the angiogram and embolism this Jan
My pain from the stroke was in my head on left leg which it still is after the angiogram and embolism I got new head pain on each side of my head from the base on my brain to the areas behind my ears. I had a nerve block on each side of my head last week which is helping but I still have the stroke head pain. The turmeric seems to help a bit but its only been twp weeks and at first I was only taking one pill a day. I got it on sale on drugstore.com with free shipping.
Do you have pain in other parts of your body?
Angela