NeuroTalk Support Groups - new to site

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Traumatic Brain Injury and Post Concussion Syndrome (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/)

- - new to site - neurofeedback and PCS (https://www.neurotalk.org/traumatic-brain-injury-and-post-concussion-syndrome/200143-site-neurofeedback-pcs.html)

Answeer about Clinic in DC.

I went on the various listserver and this is what I found
This is the center of Dr. Mary Esty well known in the LENS community. She is a very competent and talented clinician.

Hope this helps.

Dr. Diane

Quote:

Originally Posted by dannysmom (Post 1046131)

Hi all, my name is Katy and I've recently discovered this site and have read many of your stories. Thank you all for sharing! I can't believe how many people are suffering for years with post concussion issues! My 13 year old son, Danny, (youngest of 4 children) had a concussion last April after falling in the cafeteria and hitting the back of his head. He has had everyday headaches since. He is not attending school right now and his headaches are in the severe range (8, 9 and 10 on the scale). We have a homebound tutor who has been able to come about 5 times before Christmas, but Danny would always feel worse when trying to concentrate on school work. In addition to taking Vitamin D, Magnesium, Vitamin B2 and B complex, and fish oil, we have tried cranial sacral therapy, acupuncture, atlas orthogonal chiropractor therapy, a gluten free diet, biofeedback, relaxation therapy and meditation, and a range of medications from the neurologist such as amitriptyline, relpax, migrainal, zomig, mobic and vistriol. He is currently taking 100 mg of Topomax and we just started a 3 week course of prednisone. The doctor wanted him to do Botox, and we had gotten approval for it, but Danny refuses to try it. He had a spinal tap on Monday and his CSF pressure was normal and we are waiting on the rest of the results. We have recently been seeing a therapist, but I'm not sure if the therapist is for me or for Danny! He has been very helpful for us as a family, but I don't think he is going to help stop the headaches. The doctor said that after this the next step would be to get into the Michigan Headache Neurological Institute, a multidisciplinary hospital in Ann Arbor that offers a comprehensive workup as an inpatient for up to 2 weeks. The chiropractor wants him to go to Albany for an upright MRI (we had a recumbent MRI which was normal according to the neurologist - but the chiropractor disagrees).

I have been reading about neurofeedback and wonder if anyone has tried it, and/or know anything about the Brain Wellness Biofeedback and Wellness Center of Washington DC?

Please post if you have any information that might help us decide our next course of action. I apologize for all of the information at once. I'm sure I've left some things out. I am overwhelmed and scared! Danny is sick of taking medications and vitamins and seeing doctors! Thanks all! Katy

Katy, LENS NeuroTherapy is a non-volitional treatment. Many on NT have had negative experiences with LENS.

It is not approved for treating mTBI. It is only approved as a relaxation therapy. Promoting it for treatment of mTBI is against the law.

My best to you.

Concussion Clinic

Dannysmom,

I did a google search and there is a clinic that specializes in concussions in Southport, maybe they would be a good place to start for another opinion.
My concussion doctor neuropsycologist that does a computer "Impact" testing and makes sure that I am seeing the appropriate doctors to ensure my continued improvement. Right now my "team" consists of 4 additional doctors and I had a vision and physical theripist too, but just completed those programs or as far as they figured they could get me. Just a thought.

Good luck in any case, it is all frustrating and takes a lot of time.
Laura

LauraM,

What are all the doctors doing to help with your recovery ?

Many concussion clinics are just modified sports medicine clinics with a doctor who has taken the weekend seminar classes for using ImPACT and other Computerized NeuroCognitive Testing Systems. The focus is to reduce school liability regarding Return to Play decisions. It does not make them specialists. Many are very good at generating fees for their clinics with excessive diagnostics and therapies.

I have a Physical Medicine Doctor, He takes care of the headaches and ensures the medicines I take will not interfere with my lupus and thyroid medicines.
He has gone through several combinations of medicines trying to find
a combination that wont make me ill and still help my headaches.

I have a neurologist - not the one I started out with, this changed too mine got sick and quit seeing patients. She I just watching over me right now.

I have my eye doctor and eye therapist - This one I changed from who they
recomended to one of my choice, closer to home and one that did not
cater to kids with learning disabilities. I had 35 sessions of eye therapy for convergance issues. That is better, I still have problems focusing after
reading. I was told that will probably never get better and it was most likely my age and not the concussion. After reading I see words double at a distance for about fifteen minutes.

I have my family doctor. She Keeps up with has been going on and will listen to any additional concerns I have. I am currently in PT again for my shoulder when I can get out of bed to go.

Now I have the ear doc/neurologist this is new........yet to see what he will do. For now it is just medicine. It is my understanding this could lead to mor therapy or surgary later or not. Again that day I was too sick to ask questions, but have a follow up appointment soon and will see if the .25 mg of Klonapin twice a day helps.

and my Physical Therapist she is my biggest cheer leader, even though I am done seeing her, she will email me and keep up to date with my progress.

Keep in mind too I also have a rheumatologist,for my lupus and a gastro doctor for my elevated liver enzymes and acid reflux.

I am lucky enough to have in Pittsburgh a large group of doctors and many specialty hospitals in one large group. Most of my doctors are in that group and at a glance they all can see my full history and what each of them are doing. Sometimes I agree and do not think it is enough. Other times I think
Maybe there is just no way to make it happen any faster. It has been just over a year for me.