[Hellohome]

Hi

I'm new and don't really want to go into the details of my injury. In time I will but I'm not really ready to write about it.

I am desperate to know if any one have found doctors (neurologist, neurophysiology, etc.) who have an in depth knowledge of post concussion syndrome. I'm from the Bay Area in California, but, at this rate, it does not matter what state or part of the world the doctor is, as long as they KNOW WHAT THEY ARE TALKING ABOUT. I have heard my symptoms don't match the severity of the injury so my symptoms are in my head. Doctors tell me relapses never happen so it can't be PCS. I have about a dozen doctor horror stories and really need help.

Fortunately, I do have a wonderful psychologist and psychiatrist

I went to college able to read and now reading feels like running a marathon while giving birth.

PLEASE PLEASE I need Doctors!! and in need be I will travel to get to one!

[ginnie]

I really hope alot of folks respond to you. I can tell you that a teaching hospital is sometimes the best place to go. After two failed attempts at a good neurologist, I found Dr. Kevan Boyer, in Bradenton Florida. He may be the smartest doctor I have ever found. If you came this way, which is a long way from California, his assistant nurse is a gouch, which is an understatemet. He did for me, what others could not do. He is a neurologist/surgeon, with a reputation that goes beyond this state. He also has compassion, and the nicest disposition of any physician I have found to date. It is worth a consideration. I did go to Mayo clinic years ago in MN. Got a DX from there, and directions for future help. They are noted for their ability to accurately dx. Many people on this site have PCS, and will help you too. I wish you all the best, and hope you receive the help you need. ginnie

[Jomar]

If you can list your symptoms, maybe members can help with that part of it as well as suggest Drs.

[Mark in Idaho]

HelloHome,

Welcome to NeuroTalk. Your comments are very familiar. I am from the Bay area and know of no specialists in concussion there.

Tell us about your symptoms. There is far more knowledge here about concussions than in the vast majority of neuro offices. Your comment about them saying your symptoms not matching the severity of your injury is very common and completely without any medical validity.

There are a few truths to understand. First, If you have seen one brain injury, you have seen ONE brain injury. None are alike. Second, there is no direct connection between the intensity of the impact and the symptoms or time to recovery. This is medical fact. Any doctor who says otherwise is misinformed.

So, please tell us about your symptoms and struggles. We are here to help.

My best to you.

[Theta Z]

Hellohome,

If you still live in the Bay Area, this would be my own best choice, if it were me seeking self-referral:
UCSF-Concussion Clinic @ San Francisco General Hospital for further info.
Here's the weblink: http://www.brainandspinalinjury.org/...ers.php?id=196

Let us know how things proceed with you and if you get the followup care you seek.

Sincerely,
Theta

Originally Posted by Hellohome

Hi

I am desperate to know if any one have found doctors (neurologist, neurophysiology, etc.) who have an in depth knowledge of post concussion syndrome. I'm from the Bay Area in California, but, at this rate, it does not matter what state or part of the world the doctor is, as long as they KNOW WHAT THEY ARE TALKING ABOUT. I have heard my symptoms don't match the severity of the injury so my symptoms are in my head. Doctors tell me relapses never happen so it can't be PCS. I have about a dozen doctor horror stories and really need help.

PLEASE PLEASE I need Doctors!! and in need be I will travel to get to one!

[Theta Z]

Originally Posted by ginnie

"I can tell you that a teaching hospital is sometimes the best place to go."

Ginnie is right on here, re: a teaching hospital, which is what UCSF-SF General is. (Sure sounds good to me! )

From the webpage:

"The Concussion Clinic at UCSF was created in recognition of the "silent epidemic". Most people who suffer a concussion go unrecognized in the community. According to the CDC, approximately 1.4 million Americans are treated and released from hospital emergency rooms annually."

"Most are told that they have suffered a mild traumatic brain injury or concussion, and are released without education or follow up with a provider well versed in treating post-concussive symptoms. The Concussion Clinic at San Francisco General Hospital provides patients with expert knowledge and treatment of the multitude of post-concussive symptoms that can plague patients for months after their injury. "

o Held the 3rd Thursday of every month

o 4M Clinic, 4th Floor of main hospital building

o Submit an eReferral to the Concussion Clinic for an appointment

o Call 415-206-4094 for more information.

[Mark in Idaho]

Theta,

Do you have specific experience with the UCSF Concussion Clinic? I have read over all the available information about it and am not impressed. The research side is limited to diagnostic imaging but it is not in regular use. It appears to be a traditional sport medicine and athletic trainer oriented program.

I hope HelloHome, if she gets an appointment, gets a benefit from it. At least she will get confirmation of her concussion. That alone is just about worth the price of admission. Any treatment they offer will be interesting.

My observation is that many Concussion Clinics were established as a result of the 'Silent Epidemic,' whether it was the general idea or the documentary. Health care is always looking for a new way to generate fees. Most of the doctors have very limited training and experience with concussions and just set up a 'multi-disciplinary' approach to treatment. This usually means OT's PT's, and NeuroPsychs. Some have other specialties of limited value. They are the latest boutique clinic of the new decade.

[Theta Z]

Mark,

Your opinions, your impressions ... as you've said it, "Your mileage may vary".
Simply as I said, if I were in her shoes, that would be my own best-choice, and I'd self-refer myself there asap, you bet.
(Got any better suggestions for drs for her to try??)

Sounds like a darn fine place to start at the very least. I'd be there on the phone w/ them in a NY minute.

(What did you offer her? Nothing. Except this your last posting as a dis-couragement to the UCSF suggestion?? As a confusing mind-messer-upper?? :confused )

Your opinions and your "my impression of" carry a lot of weight on this forum, particularly influencing thinking with the younger age-cohorts, the sports-injured, the-moms-and-the-dads, the spouses, and those others like myself, when early-in-post-injury, was not able to think so clearly or independently for myself. You can do a lot of damage for no good result and for no apparent reason other than you seem to urgently 'needing to bash something' -- ??

And no, what I read was not based on the sports/athletics-return-to-play models of which you seem to think it is.
Do you know for certain that this one is? Did you cite/reference that?
No, ya just 'pooped' on it; and on my posting as well. (It's a very bad habit, Mark.)

You do a lot of good on this forum, Mark, but you as well tend to do harm. In that you also seem to have at some times personal need to 'bash-it-in' and 'destroy it' mentality about others' suggestions of options for what might prove helpful. I don't see the need for it, as if you are The Ruling Lord over this Forum and all has to "pass-Gatekeeper-Mark's-seal-of-muster-approval" ?? Get over it, Mark.
It gets really tiresome.


Theta

Originally Posted by Mark in Idaho

Theta,

Do you have specific experience with the UCSF Concussion Clinic? I have read over all the available information about it and am not impressed. The research side is limited to diagnostic imaging but it is not in regular use. It appears to be a traditional sport medicine and athletic trainer oriented program.

I hope HelloHome, if she gets an appointment, gets a benefit from it. At least she will get confirmation of her concussion. That alone is just about worth the price of admission. Any treatment they offer will be interesting.

My observation is that many Concussion Clinics were established as a result of the 'Silent Epidemic,' whether it was the general idea or the documentary. Health care is always looking for a new way to generate fees. Most of the doctors have very limited training and experience with concussions and just set up a 'multi-disciplinary' approach to treatment. This usually means OT's PT's, and NeuroPsychs. Some have other specialties of limited value. They are the latest boutique clinic of the new decade.

[Mark in Idaho]

UCSF has some of the best surgeons on the west coast if not the world. They have a better reputation than Stanford just down the road for some specialties. I used to live in San Jose and researched UCSF for my own neurological needs. When a Concussion Clinic is based out of a Spine and Brain Injury Clinic, the specialists are 'taking a step down' from their specialty of severe coma based brain trauma. The standards for recovery from severe coma brain trauma often are far more debilitating that the worse case of Post Concussion Syndrome. UCSF is well know for their treatment of severe coma brain trauma.

I would go see Dr Amen's clinic in Walnut Creek before spending time and money at a concussion clinic. I have researched concussion clinics all across the country. They all ( almost to the last one that I have researched) base their protocols on the Consensus Statement on Concussion in Sport: the 3rd International Conference on Concussion in Sport held in Zurich, November 2008. This statement is seriously compromised by committee consensus. The sports medicine industry has been constantly watering down the concussion issues. The treatments suggested are weak. The UCSF clinic is a proponent of the ImPACT system without qualification.

They also put too much credence in the CDC and Sports Medicine Association standards. Even the Federal government has not been able to put together a diagnostic criteria for what a concussion is.

My recommendation for someone willing to travel would be Dr Robert Cantu in Concord Massachusetts. There are others closer but he is the best. Dr Walker in Texas is also very good. There are some doctors affiliated with the Ontario Neurotrauma Foundation who sound good. By his writings, there appears to be a good doctor in Tasmania, Australia. Unfortunately, his writing have been secured in a University of Tasmania network that is no longer available to the public.

The key point for Helllohome is, Where can she find worthwhile treatment, not valid diagnosis. Concussion clinics focus on diagnosing and tracking symptoms with some therapies that may or may not be of value. When they can see a decrease in symptoms or a limit in insurance payments, the patient often gets discharged.

I have spent over $18,000 trying to find a reliable diagnosis that would lead to a reliable prognosis for insurance companies. Never did find a worthwhile treatment besides meds to control some symptoms. Even Dr Cantu only suggests quiet rest for recovery. He has been treating and researching concussion since the 1970's. His research is a key part of the recent groundswell of interest in concussion.

I hope Hellohome finds good help. If UCSF has something to offer, great. I already said that.

Here is a link to the Zurich Consensus http://www.sportconcussions.com/html...0Statement.pdf
It is worth a read to see that the only treatment suggested in quiet rest.

[rmschaver]

You may want to try this Dr. He is located in Richmond Virginia. If you google concussion and tree of life you should get his name somewhere. Your Dr., lawyer or your self can refer you. Mark in Idaho speaks highly of a couple of other Dr.s and I have found him to be a good resource of information.

He can at times be clinical but is more in his personality, I believe. We all have our good and bad days. So if someones posts grate try to take it with a grain of salt. We all come to the table with something to contribute.