I hope that you find some peace in your life. I feel for you and I am glad you are here talking about it. That is what this place is for, support. Support is a very valuable thing to have when in a difficult situation like this. Sometimes, support and the relationships I build with others is what keeps me going through a painful and discouraging time in my life. I pray that you find the help that you need to get you through the pain.

eddyx77 : I am in a similar situation like you and been 2 years now. 8 years!! I can't even imagine what you are/were going through. But I can relate some of your symptoms. Terrible, imbalance (good analogy by your doctor), eye contact etc., The tough ones are I cannot around people and have a conversation without getting dizzy and headaches. I really have to try hard to look at some one's eye and talk and if I do I get disoriented. I don't go to restaurants, malls etc., anymore. I do have to to to store and it is a night mare everytime. My legs gets weak and I get nauseous too. I have to go in and out in 10 mins in any stimulating place. I cannot find work around for many symptoms.

I wasn't able to watch t.v., be on computer etc., for few months. That was terrible and you can't even read a magazine and sure is hell. I can understand that. Some symptoms improved and some got worse. For my main symptoms I still cannot find any reliefs.

Because of all these symptoms I am pretty much confined in my apartment most of the time. I did have some mild Irritable Bowel Syndrome before head injury with few work arounds and new probiotics I even forgot I have that. After my mTBI it got worse too. Most likely bcus of all the nasty meds doctors put me through.

I did my share of chiropractors, HBOT, acupuncture etc., and exhausted all my savings. I do some part time work from home just so I can pay bills and keep going to doctors/therapists (with no change in my symptoms). I also did Vision therapy for 2 months and didn't see any improvement. But my rehab doctor believes most symptoms from my vision so I may try that route again. Before I was so optimistic with anything I try and now I just go without any expectations.

I do want to go out and enjoy the world or atleast go to the park next door. Each time I try I end up terrible. I cannot walk one block without feeling dizzy. I live in a great city which has lots to offer (Washington D.C metro). Summer used to be my fav. time and lots of hikes, festivals etc., Now all I can do sit and look outside my window. some member mentioned how being in a Hawaii can be tough with PCS. True that.

I know a 90 year senior citizen who does biking, dancing, traveling etc., and enjoying his life. Even he feels very sorry for my condition. I am in my early 40's.

I do think what is the point. If you think you are escaping this PCS hell do you know where you end up. We can only think we are escaping. I also think what kind of guilt/agony my family and some friends has to go through rest of their lives.

I don't think there is one pill or surgery or therapy to fix this. All we can do is keep trying. One thing I really do try before giving up is Stem Cell Therapy. Only clinical trials are in U.S now and you have to travel outside U.S. If I can tolerate the long flight I sure would do it.

Ok so to clarify, does a physiatrist only deal with physical pain, like a physical therapist? I do have some pain in my neck but mainly my concern is that something is wrong with the nerves or that something is blocking the normal flow of blood or energy or something like that. As I said, I have seen a bunch of chiropractors and X-rays have been taken. I'm not concerned about neck pain as much as I am about dealing with my brain injury. Do physiatrists do anything specifically for neurological or nerve function?

Thanks in advance.

Thank you for your kind words. Unfortunately I do not feel that I have the support that I need to make it through this. While an online forum like this one is certainly better than nothing, it doesn't do a whole lot to stave off the horrible sense of isolation that I live with every day. I would really like to build more relationships with people but I find it very difficult.

I'm really sorry to hear your story. A lot of it sounds very familiar, but I don't find that comforting at all. Instead it makes me very sad to know that other people on this planet have to suffer through this hell just the same as I do. If there is one thing that I am sure of it is that no human being should ever have to feel this way for even a single day. I wouldn't wish this upon my worst enemy in my darkest hour.

2 years is a very long time. I hope that you will somehow find a way out of this. If you do, please let me know. I promise that I will return the favor but I would advise you not to hold your breath. The last 8 years have been so terrible that I really can't even think about it or I will just break down. As I mentioned before, I spent 6 years without an accurate diagnosis. That was the hardest part of all, feeling this way every day and being told that there was nothing wrong with me and that it was all in my head (no pun intended). The neurologist who laughed me out of his office set me back 3 years. I shouldn't have let it affect me so much but he was the last in a long string of dismissive jerks with "MD" behind their names who treated me like dirt and confused the hell out of me.

Anyway the past is behind me. I want to believe that I still have a chance at a normal life but its very hard to see how that will happen.

You mentioned stem cells in your post but I am confused as to how exactly that would help with PCS. Do you know anything about that? Are there any known or documented cases of PCS being successfully treated with stem cells?

Just wondering because I have looked online and haven't found much.

Lastly I wonder if you have considered neuro-feedback. I didn't have much luck with it but I am told that it has really helped some people. Best of luck to you.

eddy,

The stem cell therapies with promise would not be much help for PCS. Nerve fiber regrowth and such other therapies that aim to restore nerve conduction will be the likely successes. The diffuse axonal injuries of PCS will require some miraculous drug that stimulates axonal repair. The problem is the amount of time it takes for axons to make proper connections once they start repairing themselves.

As you start understanding each individual symptom, it is likely you can find ways to limit when those symptoms manifest by altering your environment or efforts. We can refocus our brain's abilities into tasks and functions that are working by avoiding any tasks that will strain our brain's efforts.

A simple example is how I can focus on thought processes. It makes a big difference if I close my eyes while I try to process thoughts. By stopping the output of brain energy to the visual processing part of the brain, I can put that same energy into the thought process.

I used to be able to drive, eat, listen to the radio and read a map at the same time. Now, if I need to read a map, I need to have my wife stop the car (no motion stimuli), turn the radio off ( no auditory stimuli) and sit quietly while I put my brain into focus to read the map.

The simple concept is called "Stopping to think." We need to stop the other brain tasks so we can think.

As we start to master these systems of isolating brain processing power, we can regain many of our previous functions.

If talking with a person is a struggle, observe what your brain is trying to do. Is it seeing the visual background behind the person?
Is it distracted by other sounds? Does you shoe have a sore or tight spot that is distracting your brain?
Is your bladder telling you that you should find a bathroom?
Are you late for an event and the anxiety of getting to that event is distracting you from hearing the other person's voice?

There are often very simple reasons for the difficulty with the current task. We just don't have the experience to see the obvious cause of distraction or confusion. As we learn to recognize these distractions, we can develop the skills to overcome them.

Some of them are not able to be overcome. I cannot talk to someone when there is background voices. No matter how hard I try to focus on what they are saying, the distractions keep cutting in. So, I move to a different environment without the sound distractions or put the discussion off for a time when the distractions are not a problem.

btw, Your experiences with your doctors are par for the course. If they cannot image it or observe it with an EEG or such test, the brain injury does not exist. Yes, we all understand when they say it is all in our head. They just have their meaning wrong.

My best to you as you struggle to make sense of your brain.

My clinic does deal specifically with back and neck pain. I am not sure how broadly other physiatrists might be able to work with rehab. Here's a website that may have some more info: http://www.aapmr.org/patients/aboutp...ysiatrist.aspx **

The other thing is that neck injuries can be very tricky to detect. In my case, even before concussion, I had a pinched nerve in my neck that never made my neck feel bad at all. The pain referred to my shoulder blade, headaches, and tingling/numbness in my fingers.

I also recently read of a baseball player who recovered from lingering pcs symptoms such as dizziness and imbalance by working with a physical therapist who manipulated the cranio-sacral joints. http://sports.yahoo.com/mlb/news?slug=ge-koskie022409

What I am trying to say is that because there are nerves involved, a neck injury may cause other symptoms besides just straight-up pain in the neck area.

I do hope you're able to find the answers you're looking for. I am an English teacher, and my concussion has been extremely disruptive to my self-concept because I have so much trouble doing things that I consider core to my identity such as reading, writing, and multi-tasking. It is not just a simple physical issue.

According to this FAQ, physiatrists do also deal with neurological issues such as TBI. http://www.aapmr.org/patients/aboutpmr/Pages/FAQs.aspx

Another thing I read about recently is hyperbaric treatment for nerve regrowth. Some combat veterans with TBI have had success with this. I don't think it is likely to be covered by insurance, though.

HBOT (HyperBaric Oxygen Therapy) is best for those with severe TBI and other more severe neurological damage. HBOT, when used shortly after the injury can be beneficial. It has not been shown to be much help for the less severe injury that comes with mTBI or concussion.

We need to keep in mind that there are two levels of recover for TBI.

Many with severe TBI are considered recovered when they get to a functional level that is similar to PCS. That is, they have lingering symptoms that are similar to those that PCS sufferers are struggling with.

Recovery from those lingering PCS like symptoms is much more difficult. Many therapies focus on learning to overcome those limitations by learning new functional skills.

Eddy, Have you tried finding a TBI Support group? The camaraderie you will find in such a group can be very beneficial. Most will be recovering from more severe TBI and living with symptoms similar to those you are experiencing. Seeing others with positive attitudes toward life can be very uplifting.

Getting anxious about that potential wonder cure is an futile exercise.

My best to you.

eddyx77 : I feel the same way as you feel. No one should put through this agony but as you know millions suffer after tbi (mild or severe).

One member in this board went to China to get stem cell therapy (SCT)and not sure how much success he had. He sure improved and don't come here anymore I think. I had bleeding on brain (contusions) and still have evidence in MRI (minimal encephalomalacia). So that is the reason I am thinking but still researching. Most of the good treatment is in China and India. In India you can google for Geeta Shroff for SCT.

I assume PCS is also a mild form of TBI. If not I am not sure what PCS is either. So you have to look for SCT for TBI. Regarding stem cell therapy it is at infant stage right now but making a huge progress in many fields. For TBI there are many success stories with SCT. Many doctors still don't believe in PCS unfortunately.

SCT is at an infant stage right now and already seen success where conventional medicine gave up on them. I personally know some one who had Muscular Dystrophy where doctors gave only few years and with SCT he not living but making a good progress with movements, breathing etc.,

SCT is an experimental procedure and there is no guarantee and what happens long run no one knows. There is even a chance things may get worse after therapy. I am considering SCT only if there is no hope of recovery and/or condition keep getting worse.

I just post few and as I said it is not specific for PCS but overall for brain injury.
http://articles.timesofindia.indiati...y-cell-surgery

http://www.facebook.com/pages/Stem-C...575461?sk=wall


Also you hear stories where people recover remarkably and go back to normal life. I have few relatives, friends, neighbors etc., some who died unfortunately and rest of them recovered with no lingering issues and went on with their life.

When I talk to them and ask if they have any issues even like headache, sleep disorder etc., they say no issues and they are doing fine. 2 of them drinks heavily, smoke etc., and got into accident after drunk and was in coma for few days. After 6-8 months they recovered very well and started doing all the bad things all over again as if nothing happened. I know quite a few of them with mild to severe and all are doing well. Few months ago I met a fit gentleman in his 50's and was in coma for few weeks six months ago after TBI. He was in wheel chair but now slowly walking and he was an avid bike rider. He has none of the symptoms I have. He was so sure he will ride back again in few months and I wouldn't be surprised. Even in this board many people recovered but don't post much after recovery and carry on with their life which is good. So most of my family members and friends are surprised I am still suffering.

I did Neurofeedback and did saw some success. Because of TBI my olfactory system/frontal lobe damaged and had terrible smell disorder. Now it improved a lot but in the beginning immediately after Neurofeedback bad smell,headache/dizziness went down a lot but only temporarily. All my symptoms comes back the next day when I wake up. I went for many sessions and the effect didn't last long. I tried HBOT but didn't find much success with that.

As for any treatments/therapies/meds unless you try there is no way to know. This board is really helpful what all treatments/therapies/meds exist. It is up to us to try. I will be soon going for a Sleep Study as well since my new Neurologist wants me to do that. His thinking now is after 2 years I have to keep pushing it hard. He also prescribed very low dosage topomax and said it is only a try. Atleast he is not pushing any heavy meds and thinking in a different way. Yoga, tai-chi even dance lessons he wants me to do. Some yoga/tai-chi/exercise I am ok but not dance lessons. If I do dance lessons I am completely recovered that means. Who knows it may or may not help?

I sure keep you posted if anything at all and you please do the same.