[AndromedaJulie]

Hello everyone,

I don't feel that I am under anyone's specific care at this point. Does anyone have suggestions about how to find/what kind of specialist? I know there is a TBI rehab center nearby, but it’s inpatient, for people who are truly messed up. (pause for moment of gratitude.) I am struggling with stuff like major sound/sensory issues (hyperacusis), greatly increased anxiety/depression, much decreased verbal communication ability, general more confusion.

I am also getting concerned about repeated injuries. I had hit my head several times in the past, certainly concussions, prior to my big one in July. Since then, 3 more. Each one is a re-injury within the recovery roller coaster. While this is going on, I am concerned that I may be experiencing some general overall decline in mental ability. (Or, I may just be panicking about that possibility.) Also, we just are not sure if these problems result from new injuries, or a combination of injuries. Maybe it doesn't even matter.

Here are the professionals I have seen:

1. My neurologist: Awesome and competent, I saw her prior to injuries for migraines. She can diagnose my concussions, but she is not able to manage me for ongoing deeper rehabilitation, I think.

2. Concussion Rehabilitation Specialist: I saw a well respected neuropsychologist 4 times. There are 2 problems: 1) Despite my promised 70%, the insurance is running me around with the reimbursal. 2) I am not sure what good it is doing me. She administers the IMPACT - that was helpful for a while, might be somewhat helpful now. After that she discusses the results of the test and asks me about any other issues and basically tells me to continue to rest and/or do things as my symptoms allow, etc. I mean, I can come on this forum and get that advice for free, and people here are more empathetic.

3. My psychiatrist: Also awesome, she doesn't simply write me a script but actually listens and talks to me and is not arrogant. (I know! unbelievable!!) However, she is not trained in brain injury.

I had vestibular therapy, which was very helpful.

I think my beloved husband and I are in need of some feeling of competent professional guidance. Does this exist?

Thanks for any suggestions.
Julie

[Enna70]

It does exist....it just takes some time to find them....keep seeking and keep see those who listen....it's a journey and you need support....hope this helps.

[Mark in Idaho]

Julie,

It truly is difficult to find a professional who can help. As you have realized, the neuropsych is of no help. Some are connected to rehabilitation clinics with Occupational Therapy, Speech Therapy, Vestibular Therapy, etc. You may be able to find a Physiatrist (Physical Medicine and Rehabilitation) who has experience with PCS. You will need to call and maybe even have an assessment by a Physiatrist.

Often, the best help is finding someone who can help you learn to live with your symptoms. Fighting them causes an increase in anxiety which is counter to recovery. Learning to live with them will lower your stress and anxiety levels. A speech therapist may have some ideas for dealing with your verbal communication struggles.

I have learned I need to slow down my responses when speaking. I often even rehearse my comments so they more completely communicate my thoughts. I and many others have found we do best when we can communicate with written text. We have a chance to edit and refine our comments.

As for the sound sensitivity, there are a few different ways this manifests. Chaotic sounds can be reduced with ear plugs. I use the yellow foam cylinders. Others have used musicians custom fitted ear plugs. Conversations can be difficult when there are too many voices and especially when people are talking over each other. When we go to a restaurant, we try to find a booth in a corner or against a wall. This way, we don't get stuck in the cross talk of conversations around us.

Thirty years ago when I was suffering from depression, a psychiatrist got me started with the vitamin and supplement regimen listed in the sticky at the top. I was able to avoid meds by following the regimen. After my injury in 2001, my needs became more serious and I spent over a decade on Paxil to help with repetitive thoughts. Now, I take 5-HTP, L-Tryptophan and L-Theanine instead of the SSRI.

Many of us have found that we don't need a doctor to manage our symptoms. We just need somebody to help us learn how to manage them ourselves. Expecting a cure is expecting too much. By managing our symptoms, we can greatly reduce how they negatively impact our daily lives and move forward with our lives. I hope your psychiatrist helps you understand how you can reduce the triggers that cause your anxiety to increase. That is a key part of living with these symptoms.

My best to you.

[AndromedaJulie]

Mark, I am trying to process your reply.

It sounds like you are saying that we mostly need to manage our symptoms. Learn to live with them and live with our life now and see if/how things change. Use earplugs and sit in quiet corners, etc. (I'm not devaluing that. I do this too.)

I had been thinking that there would be doctors who would be able to... somehow help me do something that would actually help me get better. I can see how the vitamins would help with healing and I'm reading your sticky. But the other things just seem to help with symptoms.

Should I not hope to get better?

I mean, my family cannot plan a vacation together because of me. My husband has to go work out of town for 4 days, and is worried that I can't manage the household, even though we are putting together a support system. I can't let my kids talk in the car when I am driving. Just examples. Our life is changed because of me and everyone would like to know when it is going back to normal. And they want more than I can do with symptom management.

I am grateful for your comments but I feel discouraged and think maybe I have been too naive.

Julie

[Mark in Idaho]

Julie,

I understand your frustration. I have not driven with someone else in the car in almost 14 years. I am not suggesting losing hope. But hoping for the future without planning for today is troublesome.

Other than speech therapy, vestibular therapy and such, there is nothing a doctor can do to speed up healing.

"Our life is changed because of me and everyone would like to know when it is going back to normal. And they want more than I can do with symptom management" This is the new normal.

Everyone needs to understand that the more they can help you live within your limits now, the greater your chances are of getting better. Healing happens best with low stress and minimal symptoms. So, managing symptoms has more benefit than just avoiding symptoms. Hopefully, you will be able to slowly return to your past activities. But, that return needs to be slow and measured. A good day or two does not mean you should try to take on old activities. It takes a few weeks of good days before you can consider those good days lasting.

Have you watched the YouTube "You Look Great" series ?

[qtipsq]

Julie i would look for.a concussion rehab center that will do all your tests including vng, balance, and inquire for a neck injury. Also a chiro neuro can do this too. They can charge you 1000 dollars for a few months of treatment. This can include balance testing, vng, and massage. I couldnt take care of my recovery it feels good to be seen by specialists and feels proactive towards your recovery. If you live in mass area their is an amazing chiro neuro in acton mass. Read this blog mypostconcussionstory.com. She got a lot of help from a chiro neuro, especially if you have vestibular dysfunction.

[Mark in Idaho]

Chiro neuros are hit and miss. They help some and are of no benefit to others. Plus, insurance does not cover their services.

btw, Physiatrists are often affiliated with Neuro Rehab Hospitals and Clinics.

[AndromedaJulie]

Okay. I'm resetting my concepts. Thanks for walking me through this. It's all food for thought.

Today we found a couple support groups coming up in the next month, to check out.

I also ordered a bunch of vitamins to add to my already huge regimen!

And gave myself a Snoopy sticker that says, "Take a bow!" (we all deserve one!)

[Bruins88]

I would attempt to keep your competent Neurologist to lead the way and work hand in hand with a Physiatrists. Physical medicine and rehab helps a lot. Myself personally I have really bad balance issues which they narrowed down to my cerebellum dis-functioning from the injury. Ive been in physical therapy now since October but ive made great strides.

You really cannot rely on just one doctor. Concussions and their effects are different for everyone and no one concussion or protocol is the same. Plain and simple. What works for some does not for others. I found this out the hard way.

Physical therapy not only helps with my balance, but has also helped to teach me how to accept the injury, and how to not over due your limits. Your neurologist should have 0 issues ordering it for you if he/she feels you need it. After X amount of months it should be ordered anyway from what I understand. Just simply for the fact to reteach you your limits and gradually work into physicality, that is if you have a very physically demanding job like myself.

Hopefully that helps, but you should honestly talk to your neuro about it.

There is light at the end of the tunnel though. Keep positive.