Okay we just went to the Berkeley eye clinic (the clinic recommends prisms in some glasses to be used as a crutch until she can handle vision therapy) and at the end of the testing the 21 yr old asks the doctor about her vision totally blacking out when she was on a treadmill (physical therapy for another injury) the day before. It turns out that this has happened before when she over exerts herself. Her pulse at the time was 126.

I'm wondering if this could be some neck injury from the fall she had that caused PCS or could this be PCS? has any else ever had their vision go for a short period of time while exercising?

Thanks

It sounds like you need a doctor to coordinate all of her care. A physiatrist (Physical and Rehabilitation Medicine) may be worthwhile. The cardio work may not be good right now.

She needs to speak up about any and every symptom that manifests and the circumstances around each symptoms. Keeping a journal may be worthwhile.

The loss of vision during the treadmill sounds scary.

My best to you both.

I am just now getting a cervical spine MRI later today!

The hardest thing about PCS is that there is no one doctor coordinating the different specialists. And the learning curve is steep-who has been through this before?

Some primary care / family doctors can help coordinate, but sometimes it is hard.

I would get her neck examined. I didn't realize I had a low range of motion (look straight then look to right over shoulder and then left over shoulder) until my pt checked. Then the neurology dept. discovered I have numbness in arms and legs (pin check). On the long list of ailments, the numbness was low on the list.

Maybe a neurologist could do a complete re-check of symptoms. the UCSF clinic on Parnassus is first rate--Perhaps you could get a referral?

Good luck, poor petal!

Thanks mark and berkeley brain. Hope all goes well with your MRI

I forgot to mention we are 2.5 years out. Daughter got dropped on head in college class, went back after 10 days, then a setback, rested over the summer, went back in sept '11, had a major set back and couldn't read till 2 months ago.

We are being seen by a doctor at the SOAR clinic in SJ. We tried vision and vestibular therapy for 2 months but she couldn't manage the nausea brought on by the therapy. Since Sept. all her symptoms have been getting better.

In addition, the clinicians at UC Berkeley eye clinic had to only do half the testing in 1 day due pcs symptoms rising. We won't go back for 4 months to see if she can handle the vision therapy at that time.

I just don't know who would be able to completely rule out a neck injury--a NUCCA chiropractor of 31 years experience with great reviews or her Doc at the SOAR clinic. I feel that we are on a time limit because it has been so long since the injury.

Thanks,

I wouldn't rule out nerve damage, disc damage, tissue damage etc even after all these years. My accident was a year ago, and we are finding out more and more layers. The system is so finely tuned, that if the spine gets misaligned, it be so for years.

Her visual system seems very delicate-It must be so hard to help. What the Berkeley clinic taught me was that the eyes are connected to the brain. Being able to see correctly relies on the brain and vestibular systems being in order.

Has an ENT (Ear nose throat) specialist check out her vestibular/ inner ear system?

Big hugs to you both....

Has she been treated by a NUCCA chiro ?

A osteopath with good manipulative skills may be able to do some diagnostics. Keep in mind that a specialist does not represent the skill set of others in the same specialty. I have been to numerous physical therapists. The difference in skill set is beyond belief. Same goes for chiros, orthos, and neuros.

I have learned to keep looking for that doctor who understands my condition. It is a long and frustrating effort. The challenge is to avoid being labeled a doctor shopper looking for a specific diagnosis or as a hypochondriac. I had this problem with Kaiser in San Jose.

SOAR does not mention any specific skills with concussions. Sports medicine clinics often claim concussions as a specialty because they work with ImPACT and other Computerized Neurocognitive Testing systems. They may be fine with the 85 percent of concussions that recover spontaneously. The rest are the challenge.

I wish I had success with my concussions while living in San Jose but I was not successful either.

My best to you.

Hi Mark,
We found Dr Saglimbini at the SOAR clinic in SJ. I like him. He sees a lot of athletes who have not recovered from their concussions. He did try vestibular therapy and when that was too much he prescribed something to try to get her over the hump but she was just too nausea. He is very reassuring.

She has seen an osteopath here in Aptos and that was a good start. He is good and experienced. She also sees Dr Rozenn here in Santa Cruz who also has experience with mTBI.

My daughter's headaches are way, way down as well as her head pressure if she has a big day. For two years she could not read--too much effort to figure out what the words were. So after going to the Binocular Clinic at CAL and getting the prisms, her reading shouldn't be a burden.

As of this fall, my daughter's energy has gotten a lot better and she was able to swim to the bouys or paddle around the wharf without totally being wasted the next day.

(Note: she goes up to Active Care in SF because of a nasty case of quad. tendinosis, 3+ yrs). She was on scholarship for XC at a university in WA. We tried PRP twice. Active Care is the only PT that Dr Wall from SOAR would send us too. Yes, long drive. They are super--I can't stress this enough. Super knowledgable.)

After hearing my daughter tell the eye doc about her vision blacking out for a second when exercising...I went back to read up on the Buffalo protocol. This is when I read about the guy who had PCS symptoms but was diagnosed with a neck injury. (Yes, she got into big trouble from us for not telling us about the vision issue--car was taken away and she is now walking to her appointments)

So basically we have two more areas to rule out (plan D and F):
1. neck injury
2. hormones

You are right about not seeming like a doctor jumper. We have had bad experiences. I research who would be the best fit and most knowledgeable because of past neurologists being super hurtful. In addition, it's just so outrageously expensive--we've had to use her college $$.

(Yes she does CBT, 2.5 years, and is under a psychiatrist care)

We have not tried NUCCA but I did just email a doctor up in SF who is an instructor as well as a practitioner for the past 31 years. Good recommendations as well. Again, I just want to totally rule out a neck injury. I will keep you updated on the search once we make a decision.

Thank you for all your work you do here--I've been reading for years now. You are a comfort to those in pain and a "say-it-like-it-is for those who are pushing themselves too hard.

Thanks,