UCSF concussion clinic
 

I would like to post my experience at the UCSF concussion clinic.

I first spent one hour doing an impact test and then a series of vestibular tests which I all passed.

Then I was seen by a neurologist, Neurosurgeon and a neuropsychologist.

They listened to my story.

Before they left to consult with one another, the neurosurgeon said to me that my MRI and CT scans are both clear and normal which means that my brain is healthy and injury free and that my symptoms are coming from an external source and not from my brain. I'm not sure what to think of this.

The neurologist and neurosurgeon returned. I guess the neuropsychologist didn't return because he felt that I didn't need his help? Anyway, they suggested nortriptyline of 40 mg at night and suggested that I do 20 min of stattionary bike exercise at half the recommended heart rate for my weight and height and then if this does not aggravate my symptoms to increase it.

I will return to see them on July 16th.

Anyway, they didn't really mention a timeline or recovery. I asked him if the medications will take away my headaches 100% and he said no they won't they will just help me manage it. But that some people, wake up one day and that all the headaches are suddenly gone . He said that if I feel good for 3 months straight then I can begin to taper off the medications.

Anyway, no new answers. Still a bit confused as ever.

"the neurosurgeon said to me that my MRI and CT scans are both clear and normal which means that my brain is healthy and injury free and that my symptoms are coming from an external source and not from my brain. I'm not sure what to think of this."

I know what I think of this. This neurosurgeon is clueless about concussions. A Diffusion Tensor Image of your brain might show something different. It won't change your need to lower stress in your life. Reducing stress is a choice that we all can make. CBT (Cognitive Behavior Therapy) can help. Each time a stressful thought comes up, we respond by saying something to over-rule that thought. The most common response could be: I just need to relax, let go and give it time.

Is you primary symptom head aches ?

If you can work through your head aches but do low stress work, time may be able to resolve them.

How much time do you spend each week:
At your job ?
Researching and posting about concussions ?
Getting quiet rest while awake ?
Sleeping ?
Doing low stress activities ?

I haven't been to the clinic because I have heard from friends that they are very good at acute and severe traumatic brain injury, but not so good with mild tbi.

I'm sorry your experience only confirms this. The CT and MRI may show no structural damage (ie bleeds or contusions), but there is a lot of shearing and axonal damage that can occur which would never show on CT/MRI.

I saw Dr. J. Richard Mendius of Sutter Pacific Medical Foundation (Greenbrae) who was knowledgeable about mtbi and the power of meditation to help with anxiety. He may be able to refer you to a doctor who is on the peninsula who is experienced with PCS/ mtbi.

Good luck!

Thank you so much. I know that stress is a mitigating and aggravating factor in my condition and before my answer was well i'm stressed BECAUSE of my injury! But I know i need to control it somehow:(

I feel I've been to so many doctors both at Stanford and at PAMF and now UCSF. I still have yet to find a good doctor who understands mTBI. Did Dr. Mendius refer you to anyone who does? I live in Sunnyvale CA but if you recommend him I will go to see him.

Thank you so much.

I'm so sorry you are going through so much. It is compounded by not finding specialists and doctors who are willing to work to find answers.

I drive to see Dr. Mendius because a friend of a friend referred him to me given his understanding of the complexity of PCS/ mtbi. He is extremely busy (I had to wait 2.5 months to see him), but I would call and get a closer referral to Sunnyvale. Or invest in the drive!

I keep thinking that there should be _someone_ at Stanford or Palo Alto Medical Foundation who has some experience with mtbi! Let me ask some folks...I'll get back to you!

These individuals were cited in the press as having mtbi / pcs research experience:

1. Dr. Elaine Date, director of the Palo Alto Polytrauma Rehabilitation Center at Stanford University in California.

2. Dr. Henry Lew, clinical associate professor at Stanford University Medical Center

Thank you so much. I appreciate it a lot.

I agree with the others. In my first three months I had numerous doctors tell me the same thing....that one day I would wake up and be 100%. i wanted to believe them but I was very doubtful. turns out I was right...unfortuneately!
I would not do the exercise etc. I was also told to go to the YMCA...I did and it nearly killed me. The sensory overload was only one thing....it was awful!

Keep trying until you find a doctor that knows something. Read about MTBI from legitimate science based websites and arm yourself so you will know when you meet a doctor that gets it.
Hang in there!

Hi Bluehiroko,
I meant to reply earlier but thought that you found a doc. We are down the road in Santa Cruz. My daughter sees Dr. Saglimbeni at the SOAR clinic. http://soarmedical.com/providers/ant...-saglimbeni-md

I believe he helps patients/athletes who have had a hard time recovering from PCS. He sent her for vestibular therapy. She sees Erin at Good Samaritan in Los Gatos. I believe Erin trained with the person who developed vestibular therapy. She is really knowlegable. At Erin's recommendation we are continuing with eye therapy. (Note daughter was dropped on the back part of her head. She still can not read more than a paragraph) Feel free to contact me if you want.

Thanks

Thank you so much for your help:( I just feel so desparate to find a good doctor and I'm just so dismayed that I live near Stanford and PAMF and dont know of anyone who can really understand or help me with PCS. I will give that clinic a call.

Thank you so much for your help.