How Often Do You See Your Neurologist?
 

Hi,

I am curious...how often do you see your neurologist? I was injured on 5/24 and have a TBI and PCS. I saw the neurologist in the hospital (3 days ) and then saw him on 7/10. I won't see him again until 10/30.

I have talked with him on the phone (so he could prescribe medication for my headaches) but other than that I've not seen nor talked to him at all.

Is this common practice?

Thank you.

Neruo Doc Visits
 

Hi there

I would have to look back, but I first had to be referred to by a neuro doc from my regular doc first. Before she saw me, I had a CT scan done of my brain which didn't show anything except a previous concussion from about age 9 or 10.

So, I saw her in March, then about every 3 weeks, until there was a long stretch from somewhere in April till the start of June.

I don't know what is standard in these cases. If you feel the need for more visits, can you request them? Do you have anyone to go with you? In our condition, it's hard to process and hear whatever they have to say. And if they are rushed, it's double hard for me.

I hope this helps.

pm

I saw one about nine months after my injury and he sent me home with an information sheet on good sleep hygiene and a recommendatin to take iron supplements!!!!
Horrible experience. I wish I had a neurologist that knew something about brain injury!
Good luck with yours.

My GP saw me one week post-injury and immediately recognized the need for a neuro consult. I saw my neuro 17 days post-injury and he reviewed my MRI/CT scan(s) and spent an hour with me. He was very thorough. I've had to call to speak with his nurse, who then reviewed the call with him, and she called me back to talk about different medications and to call in the RX's.

I have a follow-up in a month (today is exactly 2 months after my accident). Between my GP and my Neuro, I feel like I've had the right care. But, is there ever enough if you don't feel right?

I think that's pretty normal.

The first neuro I had saw me every 6-8 weeks. After he was no help at all to me, I fired him.

My second neuro saw me every 4 weeks until I started to get better. (I was in VERY bad shape when I first met her.) Since then, she saw me every 2-3 months and gradually she increased the time between my appointments to every 4-6 months.

I saw her last about 5-6 months ago and I'll see her again in a few weeks.

I never actually saw a neurologist. I had a craniotomy the night of my accident, and had a follow up with the neurosurgeon 10 weeks later after being discharged from hospital.

Most of my appointments were with a MD specializing in physical medicine/rehabilitation (physiatrist) rather than a neurologist. I saw her daily while in the hospital, then monthly for the first three months as an outpatient. I also had two neuropsychological assessments with a clinical neuropsychologist, one in the hospital just before discharge, and a follow up three months after that.

The physical medicine/rehab MD was the one that structured my physical, occupational and speech therapy rather than a neurologist. After the cognitive deficits were mostly resolved I saw her every six months for two years. After two years with everything stable and back to normal we stopped the follow up visits.

Thank you
 

Thank you all for your responses.

I don't seem to be getting anywhere with my recovery, though surely I must be. I have blinding headaches which never stop. My eyes hurt.

I've tried 2 medications now for the headaches and both of them make me feel so dizzy and I can't walk, speak or do too much of anything while I'm on them. The last medication was Topamax and I got off that after just 4 days and I was taking the lowest dose available.

I've tried to remain positive and upbeat, but it's difficult due to the headaches. I just want to curl up and sleep.

Gosh, if you ave an ongoing headache that never stops - that sounds similar to what happened to me. My second neurologist suspected an increase in intracranial pressure and ordered a spinal tap. The headache I had was literally excruciating and got progressively worse over a six month time until she ordered the spinal tap. (It was on our second visit.)

I had to live laying down in the dark with black out curtains over the windows for months on end. The headache hurt my eyes too - it's one of the symptoms of increased intracranial pressure, but the symptoms can very between patients.

The severe pain I was in was relieved within five minutes after the spinal tap.

You might want to bring it up with your neuro next time you see her.

Thanks, no call back from the neurologist again today. I'm heading to the emergency room in the morning for help.

I can understand that a neurology fellow works the night shift, however, since I left instructions they could call me up to 11 p.m. and he begins work at 8 p.m., there is no excuse for him not calling me (this is the second time). Once I'm done with the ER, I'm heading over to the neurology office to give them a piece of what's left of mind and switching doctors.

Thanks for your reply.

Regarding your eyes! Have you been checked by a neuro-opthamologist for vision problems in the brain? This is very common after a brain injury /concussion. Number one thing to get checked. Check out some of the posts on this or other sites regarding vision therapy, NORS organisaton, etc.
Goodluck!

Hi Mokey,

After reading posts here I called today to see if I could see a neuro-opthamologist and was told my neurologist must refer me to him. I've tried again to get through to my neurologist and I'm met with answering machines and excuses.

I am going to the ER in the morning if I can hold out that long. After that, a trip to the neurologist's office to make my displeasure abundantly clear!