My neurologist sucks.
 

I'm serious...Every neurologist I've seen so far has done nothing for me.

You know, I understand there is no magical brain injury pill...but let me tell you something. Not one of the 3 neurologists I've seen have given me any advice, they haven't told me to avoid stress, nothing about vitamins and nutrition and they don't seem to care or have any answers when I tell them I'm getting worse.

My appointments are like this...I walk in the room, the neurologist says hi, what's going on? I tell him my symptoms and he says "You have post-concussion syndrome, bye have a nice day". That's been the case with all 3 doctors I've seen.

If it wasn't for NeuroTalk, I wouldn't know anything about brain injury and how to maximize my recovery.

So, thank you NeuroTalk and everyone here that has ever given me advice and/or posted a useful link about brain injury. If it wasn't for you guys, I'd probably think I was losing my mind.

Are these work comp neuros? Neuros on the whole aren't much use to PCS sufferers, but when they work for the work comp insurance companies, they don't even try. at least, that's my experience.

You should try to get to see a neuropsychologist; I had to get a lawyer to get into one. I'm going in for an evaluation at the end of this month that is expected to take 6 hours. My neuro? 15 minutes. And half the symptoms I complain to him about are not really symptoms according to him. he's a putz.

Yeah I feel exactly the same, bunch of charlatans. I'm currently reading a book published in 1989 which is pretty much spot on and full of amazing information, evidence and advice. It seems as though medical knowledge with regard to head injury must have gone backwards since then :confused:

I sometimes wonder if they are equally ignorant about other neurological conditions such as Parkinson's, or whether they singled our problems out as particularly unworthy of their attention.

I'm an occupational therapist, been working in mental health up til now but I'm going to go into neuro and do something about this in my own little way.

Nope, I didn't get hurt on the job.

I was a victim of a random assault.

I don't have insurance to pay for a neuropsychologist. I have something called Victims of Crime, but the funds are limited...and they are going to want a neuropsychological exam (not sure if that's what it is called)...Those are really expensive. It would probably wipe me out of my VOC fund and leave me with nothing for the rest of my recovery.

Question for anyone who has had a neuropsych exam...what is the purpose of it? What do they do after they find out what areas your struggling in? I don't think I want someone to tell me how badly I'm messed up...and not do anything to help me with it, you know? LOL. I heard the test is pretty extreme...it would probably leave me in bed for 2 weeks after. Not worth my time, money or effort.

I have had the same experience with my neurologist, he doesn't know or he doesn't care.

It gets even worse than that. I went to see the post concussion work group in the Danish center for brain damage rehabilitation. They want me to participate in a new research program where they use physical therapy like weight lifting and cardio training to see if people suffering from PCS improves.

I asked them if they wanted to try the buffalo university sub symptom threshold recovery program themselves, but of course she never heard of it. Their plan was to make people exercise a lot and do weight lifting 3-4 times a week for 20 weeks to see if they got better. I kindly had to explain to her that exercise actually makes it worse unless it is strictly monitored. Well she never heard of that and they didnt plan on monitoring anybody:eek:

Good luck with that...

Next time you see a doctor, Try this:

I suffered a severe concussion last year with a brain bleed. I understand there is no quick fix or magic pill but I am struggling with my symptoms. I am looking for someone who can help me manage my symptoms. Can you help me? Or do you know someone or some place that can?

Rehearse this. Doctors want to be appreciated and like to know they have a direction to try to take their patient.

I wonder if you could be seen at the University of Nevada School of Medicine Clinic in Vegas to begin a study with some med-students/interns. I don't know if this is available but worth asking. Too bad the School of medicine is in Reno. That would be a worthwhile place to try. Teaching hospitals sometimes can assign a group of interns to work with you on a longer term.

Hi Nwsmith
 

So sorry your luck with Neurologists hasn't been good. Wish you lived near by, I would recommend mine. My first one however was a different story. I hope you heal fast, and that you continue to post and let us know how you are doing. NT has been there for me too, it is why I never left. ginnie

Yeah, that wouldn't go well with me. When I do anything physical, such as exercise, lift something heavy, run/jog, push a stroller for a long period of time, etc...My cognitive functions are wiped out immediately.

We just moved on the 31st...and I couldn't even carry small stuff up the stairs without it screwing me up. I felt so disabled...

Interestingly, I've had very good advice from Occupational Health doctors and nurses, who I had previously assumed were there as some sort of evil medical wing of HR whose function was to help my employer enforce a punitive sickness policy.

They seem to understand head injuries far better than neurologists, and to be able to give good advice which actually helps the healing process in general as well as my return to work. Big up to Occy Health!

Thanks...I'll try that next time. I've said something similar before...like, I know there is no magic brain injury pill...but I was wondering if there is anything you can do for me, as far as improving my recovery.

They don't seem to have any answers for me.

So, I shall continue my search for the perfect neurologist...or one that has successfully treated patients with a brain injury. One that actually cares...I'm sure I'll be looking for awhile ;)...

What is the point of this search, you know everything they might tell you already surely? I think early intervention is where a neurologist should be earning his or her (hefty) wages, once you've worked out what the hell is going on and been on neurotalk for a few months I don't think there's much left for them to tell you.

Before my injury, I was experiencing some pretty weird things...For instance, I was at karaoke with my mom and some friends. After one of my songs, I stepped off the stage and all of a sudden...my body felt like it was leaning to one side and I was having massive trouble thinking. I thought maybe I had a stroke or something. This lasted for about 30 minutes...It was really strange and scary.

There has been other weird things that happened to me before my injury...I can't really remember the details...but I've always thought there was something wrong with me.

So, to answer your question, I want a doctor that actually cares about me...and listens to me when I tell him I'm getting worse. I'd like someone to try and figure out what the problem is and stop pointing fingers at the brain injury. There is a possibility of something else going on, such as a disease, or another neurological condition...Since I've been in a constant decline my entire recovery.

I want tests to be ran on me...like a full blood panel, and whatever else they got besides MRI, CT and EEG. I know there is other things they can test me for...to find out why I'm getting worse.

Yes, I'm under a lot of stress...but usually when something stressful happens, your down for a couple days and bounce back to your normal brain injury symptoms. Well, ever since September, I've been having permanent changes. Such as losing the ability to watch TV and play video games. I used to do that with no problem. November, I lost that ability and it never came back. My brain shuts down instantly, as soon as I lock eyes with the television set. It doesn't matter if it's HD, standard or a mobile phone.

I've always had a little trouble with thinking and speech since the injury. Well, at the beginning of March, I woke up and the spontaneity of my thoughts and speech were diminished. I've also started to get physical symptoms that I didn't have before...such as losing my balance and weird, red colored floaters. Yesterday, I completely lost the ability to express myself. Nothing is coming out right, sometimes it won't come out at all. It's very scary...

I don't know, it's just been one step forward and two steps back my entire recovery. I'd like someone to take the time to diagnose why I'm getting worse and stop telling me what I already know...That's all!

Nick

Hi Nwsmith
 

In some respects I see what Klaus is saying. There is indeed alot of information for TBI right here. However you are your own best advocate, and we are not doctors. If you really feel you are not recovering, and are dissatisfied with the neuros, why don't you ask your PCP?. Do you have any kind of relationship with any doctor? When I get into trouble, I go to my PCP care first. I trust him more than anyone, and he usually has some very good advice. Not once has he steered me wrong. He even intervened when I wasn't getting through to my pain specialist. He called him for me. I would seek the doctor you know the best for direction. It must be scarry to have all those symptoms. I hope you recover soon. ginnie

It is scary to experience these symptoms. I'm losing my ability to think and speak...and it's not coming back, no matter how much I rest. I just want some answers.

I don't have a PCP because I don't have insurance. There is a really good nurse practitioner that I was seeing...but it's 50 bucks each time and they send the rest in a bill. She can only do so much...she referred me to the NV Community Enrichment Program.

Well that makes sense. Good luck!

My neuros sometimes gloss over what I am saying and want to talk about pharmacuetical meds and not suppliments. I finally after 5 visits got them to understand.

CLA (conguated linelaic acid is good (eat a couple of handfuls of sunflower seeds each day. ) they also have good omega fats.

Primrose oil is another goodie. Helps nerve function in fat areas (like the brain)

Dont forget your vitamin D. 2000 units a day is a good dose. Its the only thing we cant make on our own, and most of us are covered in sun lotion now. We need the sun to do it. A 15 min walk each day is helpful. it helps rebalance cortisol (stress hormone) levels and helps anxiety.

dont forget a good multi vitamin.

Eating well is still your best defense to help your brain heal. We need nutrients and real food. Most of the food we eat today is dead food, and dead nutritionally. Eat as many raw foods as you can. Salads, fruits, nuts, eat cooked fish (wild caught salmon is amazing for your good fat.) and try to start to remove as many processed foods as you can. MSG is horrible for the brain, as well as sugars (fake or real) and high fructose corn syrup should be avoided. You must become a label reader in the store which is quite a challenge on days when your head hurts, and you have a fog fall over you and its feeling like you are over stimulated. Hang in there. If you cant finish at the store, at least read them once you are home. Learn about what you are putting in your body.

There is a move called Food Matters on Netflix or even youtube if you like. Just educating yourself on what you are eating will do great things for you.

best of luck ((hugs)) :hug:

Hi Nick,

I understand what you're going through. I was discharged from the Head Injury Clinic because they said there isn't anything they can do. I'm going back to see the neurologist who actually told me just to go see the Head Injury program and not him. (in so many words). I dont think he planned on the clinic to discharge me but they did and told me to see him instead. I feel like I was bounced in not so many words.

I am around the nine month mark. I am trying to accept my injury and it's effects on me. I dont think I'm in denial but I do think maybe more should be done. Maybe it's the next step into my acceptance. Not sure. I do know I'm on day seven of a migrane and something needs to be done.

I never had my neck or back xrayed and I think because of the tension I feel in my neck along with the burning sensation in my upper back spine area warrents some looking into. I mentioned this to the head injury clinic and they looked at me like I was crazy. I am also fighting a crummy tummy as well and that hasn't happened since the first month of my injury and it's so much worse when I lay down. Interestingly enough when my head hurts the whooshing sounds goes away. When the headache goes away the whooshing sounds is back. Not sure what that means.

I can accept all this but I just need to be sure that there isn't something we are missing. So Nick I would say do what you feel you need to do. There is alot of wonderful information on this site and for that I'm grateful. Like Nick said no one told him not to drink, what supplements to take etc... I've worked in specialists office so I know what goes on behind closed doors. I know they have to see one patient every 15 minutes in order to bill out and stay afloat.

Neurologist do suck.

I can give you a list of names in NYC (one asked me to touch my nose).

From bits and pieces that I've picked up over the last few months, my understanding is that neurologists treat "physical" issues, like chronic pain or numbness or sports injuries like bad knees / tendonitis type stuff, you know, nerve damage things. At least that's all the neuro's do in my small rural town. They can diagnose TBI but can do nothing about it. (how about let's try a tens unit for the brain haha!! ...not...) NO help at all, don't bother with them, they can't fix anything.

Neuro PSYCH doctors, on the other hand (neuropsychiatrists and neuropsychologists) are better trained to treat TBI / PCS symptoms -- they are more "mental" oriented and can help much more with thinking problems like the brain fog, flooding, adynamia, anxiety, communication issues etc., that are the result of the injury.

Unfortunately for my son, the nearest ones to us are an hour away. Hoping to find one ASAP and get started!!

So what I mean is that neurologists may diagnose treat a physical injury, but the psychs treat the resulting and often permanent cognitive symptoms of the injury, by teaching other parts of the brain to compensate for the "dead" parts using assistive aids.

Great read -- "Over My Head" by Claudia Osborn.

FWIW my clinical neuropsychologist was awesome. She saw me 4 times when I was in-patient in the neuro-rehab unit in St. Joseph’s hospital in Phoenix. The first time she saw me I hadn’t cleared post-traumatic amnesia so I don’t remember that session, but the following times she provided information to my wife and myself, and gave us hope when things looked bad. More importantly, her evaluations provided the focus areas for the therapists to work on when I was in-patient, continuing as an outpatient and suggesting things for me to work on independently as I recovered at home. Three months later my follow up neuropsych evaluation results were that my cognitive abilities had improved back to what they call “pre-morbid” expectations. I was able to return to work and start driving again about six months following what was described as “severe” TBI.

I still deal with mood problems (depression, anxiety) but because of seeing progress in regaining memory and executive functions, I am optimistic about my ability to recover from these as well. I plan to either start CBT or practice on mindfulness meditation to work on the emotional issues.

been there , done that
 

I also had a regrettable experience with my first neuro. Besides visits he wasn't prepared for (yes he charged anyway) . After he admitted to being "stumped" he didn't even mention consulting with a colleague . "We ' ll just watch for awhile and see what happens " . If it weren't for being admitted to the hospital for something unrelated , a complication of that operation brought me to neurologists attention , I might still be undiagnosed and untreated . I ' m doing better now and hope you will to.QUOTE=Lightrail11;866561]FWIW my clinical neuropsychologist was awesome. She saw me 4 times when I was in-patient in the neuro-rehab unit in St. Joseph’s hospital in Phoenix. The first time she saw me I hadn’t cleared post-traumatic amnesia so I don’t remember that session, but the following times she provided information to my wife and myself, and gave us hope when things looked bad. More importantly, her evaluations provided the focus areas for the therapists to work on when I was in-patient, continuing as an outpatient and suggesting things for me to work on independently as I recovered at home. Three months later my follow up neuropsych evaluation results were that my cognitive abilities had improved back to what they call “pre-morbid” expectations. I was able to return to work and start driving again about six months following what was described as “severe” TBI.

I still deal with mood problems (depression, anxiety) but because of seeing progress in regaining memory and executive functions, I am optimistic about my ability to recover from these as well. I plan to either start CBT or practice on mindfulness meditation to work on the emotional issues.[/QUOTE]