I went to a neurologist yesterday for the first time since my accident on 8/9/12. First, I want to say that the appt. was very hard on me. I had a very hard time keeping up and comprehending everything he told me. I did have my father with me, so we went over everything afterwards during lunch.

The doctor told me that I did not have a concussion, I had a traumatic brain injury. I asked what the difference was and he told me that there is a difference in the force of the accident. I asked if it was similiar to a stroke (because of the bleeding) and he said "no". A stroke is localized bleeding and I was bleeding in many different places on the brain. I think when he says TBI, he is talking about someone that had a bleed. I am not sure about that.

He told me it would take at least a year to two for recovery. But he said chances are I will not recover fully and that I will have some symptoms permanently. He said with a TBI, he considers anyone over the age of 25 to be old in regards to healing. He also told me that I have a much higher risk for seizures for the next 10 years!

We also talked about the lack of pain that I have in my head when I have headaches. He said this was one of the major differences between concussions and tbi's. People with concussions have many more painful headaches than people with tbi's. They don't have much pain or headaches afterwards. He explained it like "They know they have a headache but they don't really care". I told him that I could feel the pulsating of the headache, but it was dull.

I also asked him about one of my eyes. Since the accident, below my right eye, it has been swollen. As my roommate said "I look like a football player with the dark bag and the swelling". Just what I wanted to hear. Anyway, I asked if that was also a cause of the injury. I really thought he would say no, but he said yes, that it definately could be from the fall. Again, I forgot to ask if the swelling will go down.

He did an exam and I can say that I did not do well on the balancing act he was trying to get me to do. Tippy toes, stand on one foot, etc. I am going back next week and I will be doing some testing. I think the tests are to get a base line of where I am at now. He may also be ordering another MRI and an MRA(?) to make sure I have not inherited my mother's aneurysm.

After leaving the appt, I realized I did not ask him about PCS, PTSD or the panic attacks that I seem to have now. He did give me some text that he copied out of one of his books, but that has left me with more questions.

I was so exhausted from that little trip to the dr, I slept for 3 hours when I got home. I feel like I have regressed back to the beginning again with brain fog, dizziness, memory problems, fatigue, etc!

I don't mean to go on and on. I was hoping that some of this info might help others and if anyone has any thoughts, I would love to hear them.

Thanks,

Patty

Patty,

It sounds like you have found a 'one in a million' neurologist. You are very fortunate. I can understand how tired you were after the exam. The neuro was putting your brain through a serious test of function.

I can explain some of the terms and symptoms.

An MRI/MRA is an MRI with a second image that does not image the vascular structures in your brain. They use the computer to subtract the second image from the first and the left over image is the vascular structures in your head. MRA stands for Magnetic Resonance Angiograph. An angiograph is an image of blood vessels. The MRI machine can not image the blood vessels individually so they do this subtraction process to show the blood vessels. It is much safer that injecting a contrast material into your blood stream plus it is much cheaper.

The bruise and swelling below your eye may be an injury to the meninges, specifically the dura mater. It has become inflamed. There is a name for this condition but I don't recall it.

Your neuro did tell you some hard facts regarding recovery. While this is true, there are many things you can do to overcome the dysfunctions that do not heal.

Your questions about PCS, PTSD and anxiety would have likely been answer in the affirmative with the exception, instead of PCS, you have similar symptoms to PCS but they are due to a TBI with the associated brain damage. The TBI Survival Guide at www.tbiguide.com will explain a lot for you. You can print it out.

Hopefully, at your next appointment, he will refer you to an Occupational Therapist and Speech Therapist to help you with your symptoms. There are skills you need to learn that may not be taught by the OT or ST. There are people here who can help you understand many of the work-arounds and accommodations you may need to learn.

It would be good if he refers you to a NeuroPsychologist (Ph.D.) for a NeuroPsych Assessment (NPA). This will define you current cognitive and memory functions so the therapists will understand how to help you. NPA's are as fatiguing as you neuro appointment and take even longer but will reveal very important details of your struggles.

He may refer you to a neuro-psychiatrist (MD) for help with your anxiety symptoms. He can prescribe meds to help you. Or, he may just prescribe them himself.

Please try to be encouraged. You have found a wonderful neurologist. Things will get better.

My best to you.

Interesting didn't realise there were difference. For a long time I have had the sensation similar to that when you take off a hat you have been wearing for a long time. Sort of uncomfortable but not overly painful.

Hi Patty, glad you found a good neurologist that was able to answer some of your questions and concerns.

Like you, my TBI was not diagnosed as a concussion, it was a closed head TBI that required a craniotomy to evacuate an epidural hematoma and repair a temporal skull fracture.

I’d like to share with you that (as Mark mentioned) occupational and speech therapy was very helpful. When I was first in neuro-rehab I didn’t know what year it was, who the President was, and I couldn’t do any simple math problems. I did have two NPAs with a PhD level clinical neuropsychologist. The one two months post-accident still showed significant deficits in cognitive processing. With the OT and ST sessions, I continued to make progress and six months after the accident I was able to return to work.

Today I have almost no memory or cognitive deficits. I was 56 when I had my accident so even us “old folks” can recover. You are still early in your recovery, and I expect you will make significant progress. I consider myself to be evidence that miracles can and do happen. The very best to you on your recovery journey. Thank you for sharing your story with us and keep us posted.

hey patty did they give you any advice on the dull pain, thats the same experience i have and i notice tylenol dosen't do a thing and its just constant, is there any relief?

congrats on finding a good neuro, hopefully ill have some answers myself next week when i go, this 2+ weeks of insomnia has been terrible

Oh my, Patty, you are so lucky......you did find a one in a million.

Good for you.

I think many of us have misused that difference...Concussion vs TBI, referencing our headaches over time. We have all had those headaches that really hurt and hurt, and then over time they are there and varied in their discomfort to our routine, and intrusion into our life....whether or not we care for their presence, they were/are intrusive.

Keep your Neurologist, Patty, follow his direction, hope your future with him/her is a good and progressive one.

Abel,

I call those dull pain head aches, Mud head aches. They make my head feel like it is stuffed full of mud and my thoughts feel like they are stuck in the mud.

I deal with the so often that I no longer reach for the Tylenol until they get more intense.


My best to you.

Thank you for the clarification Mark, I really appreciate it. Do you know if the swelling under the eye will go away? Some days it is really swollen and noticeable. It can make a girl a little self conscious

Lightrail, it is good to hear that some people have had a good recovery from an injury like this!

Abel, he did not say anything about the dull ache and what to take. I do agree with Mark to wait until it pounding gets really bad, then I take a Vicadin. ( which isn't always good because of the side effects that comes with taking vicadin) I have only had to do that twice in the past 3 months. I will say though, that if there is one symptom that doesn't go away, I wouldn't mind it being the painful headaches. I used to get migraines all the time before the injury. It would be nice to be pain free for awhile.

Patty

In some cases, the torn dura mater needs to be surgically repaired. The MRI/MRA is likely to get a better idea of whether there is a tear or not.

I would not get too worried yet. There are plenty of tests to go before you should worry. You have already achieved the best by finding such a fabulous neurologist.

Have you ever tried the powder make-up? It is fabulous at hiding anything except the puffiness. My girls don't use anything else. My wife and girls uses the brand on TV. Bare-minerals and Sheer Cover are the two most available brands.

As you say, A girl needs to feel good about her looks.

I do use a foundation like sheer cover, but as you said it doesn't cover the puffiness, just a little bit of the bag color. Some days the puffiness on the right eye is much worse than other days. I wouldn't mind so much if they were both swollen, at least then I'd match.