Hello I am new here although I have been reading the blogs daily fort over a year now.

I have a daughter who experienced a "relapse" last Oct. 2011 with the symptoms being far worse than the original PCS symptoms. Every neuro that we have seen has clearly corrected her by stating that there is no such thing as a relapse.

I read all the time about others struggling after doing too much. What would the correct term be?

Thanks,

hopeful mom,

Welcome to NeuroTalk. Sorry to hear of your daughter's struggles.

The neuros are half right. There is not a full definition of what a concussion is so trying to define a relapse is even more difficult.

Either way, your daughter is struggling and has doctors who do not know enough about concussions to help her understand what is happening. This is not uncommon.

Another term that can be used is 'decompensate' although relapse is close enough for me.

Please tell us about your daughter's injury and her history since her original concussion. What has been recommended for her to help her with her recovery. Tell us about her health, age, usual activities, easting and drinking habits, (junk food and caffeine, etc) and we will be better able to help you understand what is going on with her PCS.

It also helps to know where you are so we can suggest treatment, etc that fits your location.

There are plenty of good people here who can offer great support.

My best to you both.

Good question. I would ask them what the correct terminology is? if they can not or will not answer you directly then ask them if their response is not more of a philosophical opinion. I do not work well with the neurologist I see. I don't consider him a bad doctor but his method of managing of my injury has been awful.

I do not let him off the hook and only after dogged determination can I get any help from him. My regular primary care doctor has been for more help. It is only because of him that I finally got any PT, had my spine looked at, received a referral to a psychologists and am scheduled for a nuero psych assessment.

It seems to me that neurologist are the preferred diagnostic doctors for PCS and yet they are often terrible at addressing the many symptoms PCS suffers have.

Thank you for your replies

Daughter now 20, under the direction of a teacher was accidentally dropped on her head by a student in an Improv class at a NW university May of 2011. Out of school for 10 days, went back after getting the okay from a concussion specialist, had a "relapse" within 3 days, took incompletes in classes and recovered over the summer. She went back to school Sept 2011...within 3 1/2 weeks ALL HER SYMPTOMS came back. She has been here in CA (Bay Area since)

Just got into the Stanford Integrative Clinic and has had positive results with acupuncture. Review with the doctor coming up soon....

She sees an osteopath in town (~ 10 times so far) 1 time/week for 2 months and now down to every other week. Positive results--more energy, less symptoms

Does not drink, smoke, or do drugs.

Sees a awesome psychologist (1 to 2 times/week). Has diligently worked hard over the past 1 1/2 yrs. Unsure of all the meds that she is on. But she is watched carefully by the psychiatrist. Depression was a challenging issue, but is under control now.

Her main issues: short term memory, can only read 3 pages, pressure in head, feeling foggy, light sensitivity...note: she had graduated as a valedictorian and was super excited about college.

I believe that the next test should be to make sure that her eyes are working together. There is something not quite right...although the eye exams come out with 20/15 eye sight. It was the occipital region that took the impact of the fall.

I will review the vitamins and the dosages this weekend.

Let me say that she is much better than she was one yr ago. PCS is awful.

Has seen neurologists and has had a neuro-psych exam...not much they could offer. It's just my husband and I leading the charge!!!

Thank you...hopefulmom

hopeful,

Be sure they take a close look at her upper neck.

Most concussion specialists are more like doctors who want concussion patients that doctors who know how to care for them. They get a captive patient base because schools that use ImPACT and other computerized concussion testing systems require a 'concussion specialist' approval before allowing return to activities.

I hope the osteopath is not trying to 'read' and adjust her skull plates. Light neck work, traction and gentle manipulation can be helpful. The research into concussion and acupuncture showed no benefit.

Quiet rest and good upper cervical care plus proper brain nutrition are about all that can be done. Maybe the integrative medicine will treat her with this in mind.

I wonder which meds are helping her and which may be working against her. She needs a good assessment of all her meds in context of a concussion patient, not a common psych patient.

Hope she gets a good assessment.

My best to you both.

Hi HopefulMom,

Your daughter is lucky to have so much support! I think your instincts about her eyes could be a good one. On a fluke I went to see a neuro-optometrist who is part of the FNORA organization. She prescribed prismatic glasses that made a huge difference in how much I could read and use the computer. I am also less sensitive to light and motion with these glasses. My doctor is in the Chicago area but her website has useful links. Her name is Dr. Zelinsky. I have had PCS for 2.5 years and I have tried everything that seems like it could be helpful: 4 different neurologists (I like the one I am with now), acupuncture, massage therapy, 2 different chiropractors, myofascial release, cranial sacral physical therapy, pt using the Makensie method, supplements, pure organic diet with no processed food, sleep doctors who diagnosed sleep apnea (I now use a c-pap machine). Of these things I would say the prismatic glasses have been the most helpful. I keep looking for a magic bullet. Every brain injury is different so what has worked for me might not work for your daughter. Good luck.

http://science.dodlive.mil/2011/06/2...es-ptsd-video/

The Comments section says it all. (Skip over the videos; too difficult on the eyes.)

Thank you Mark for your reply. I accidentally left out the part where my daughter was diagnosed with TMJ and was referred to an osteopath by a neurologist for this condition. She and the DO discussed her medical situation and decided to try 5 sessions and then re-evaluate as along as she was benefitting from each session. Her TMJ pain decreased in addition to some of her PCS symptoms also decreasing.

It is my belief that some mTBI patients will experience an increase in anxiety, depression, fatigue, head pressure, etc and this will manifest itself in some way. With her it seems to be sleep related with an increase in teeth grinding.

The Integrative Clinic at Stanford is not even a clinic for mTBI. However her symptoms of PCS are clearly symptoms that the clinic focuses on.Yes this was a stretch..but she has stated the that there have been a decrease in her PCS symptoms.

The acupuncture done at the clinic has absolutely helped with her TMJ and the general anxiety regarding her medical and educational situation. I can ask her specifically about it but that is always fraught with peril

I really had read your replies over the year and took from it to focus on the symptoms that are bothering the patient the most.

I did look into the NCUUA and found a specialist in SF who has been doing this for years: Zabelin, Michael S, DC - Cow Hollow Chiropractic, but one medical treatment at a time. If we go this route then definitely icing afterward will be
done.

Thank you for you general diligence in responding to people who are reaching out for answers.

Thank you rmschaver and Theta for your replies. There seems to be a thin line that I walk when dealing with an adult/child who had doctors appointments that I am invited to. I try to be respectful of her space...I have not always succeeded but I am doing better and better with time!!!

Concussedlawyer. Thanks for the information about the prisms in your glasses. Is there anyway for me to get the name of your doctor, neuro-optometrist, in Chicago? I am willing to contact him and ask about other neuro-optometrists doing prism glasses here in the Bay Area. I actually bookmarked another positive response using prescribed prism glasses in this forum--I wish that I had organized my bookmarks a little better.

Vision therapy, prisms on glasses make total sense for her. It's just finding the right doctor in the right location and then gingerly offering this information to her.