Neuro Orthopedic Institute


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The last six months have been very tough. Apart from the loss of the housing subsidy, even more cuts have fallen on our family. I no longer have money for medicine, often, short on food, and forget any extras. Everything has gone to rent just to ensure I won’t be on the street again, with no physical strength even to walk.

At the same time, the discouraging experience at Stanford only grew more so:

1) After returning to my GP in October after Stanford refused to do anything at all, I begged and cried for an MRI – what Stanford would later characterize as my “demanding medically unnecessary testing.”

Well, over the next 3 months (yes, 3 months since my GP refused to order all the MRI’s at the same time) the MRI’s of my spine, neck and finally, yes, finally, ONE MRI of my ankle/foot – of course, I was denied an MRI of my entire right leg (now that would just be too much!) – REVEALED MANY SURPRISES.

While UCSF and Stanford claimed I had ‘mental health problems’ or ‘fibromyalgia’ – yes, you guessed it, with absolutely NO testing to back their claims – this is what they missed while they did nothing for the last 9 months – before throwing me out of care just like Stanford PM threatened – as they claimed because I had  ‘demanded medically unnecessary testing’

A) Significant damage in my Spine that requires Orthopedic Surgery.

B) A ganglion nerve cyst in my right ankle,

and, drum rolllllll

C) the chronic tear that appears on the top of my right foot – right where I pointed to every single time, and completely ignored for over 3 years! (Yes, the same three-year time limit for a Medical Malpractice suit against UCSF for the Venipuncture Wound).

So, as Stanford and UCSF were padding my file with fake Pain Management appointments, and failing to conduct ANY tests at all, they were also trying to build a picture of the ‘savage, angry, violent’ Indian to fit their narrative of why they did not do their jobs, nor, conduct any of the necessary further testing to ‘eliminate’ anything else.

No testing of anything, nada, zilch.

So, by last October when Stanford sent me on my way, the three years expired during which from the time of the nerve injury from the blood draw, complaining that I was ANGRY, they failed to conduct any testing nor find the damage described above.

What was worse was that:

1) After the MRI revealing the ‘extensive’ damage to my spine as my GP mentioned, we both – she and I – called Stanford PM to follow-up and get an assessment of the spine damage. We called over and over and over. No reply, no response.

I called Medicare to ask why I was not getting appropriate treatment and response. Stanford’s Patient Advocate contacted my GP’s office staff to ask about their experience and when they described the numerous lost faxed documents, appointment and MRI requests and failure to call us back, all they got from Stanford was ‘sorry.’

What did I get? I got a letter stating that ‘my behavior’ and ‘demands for medically unnecessary’ testing was the reason Stanford, after 9 months of NOT even seeing me, testing or doing a thing, said they were no LONGER going to see me as a patient.

When the Patient Advocate said Stanford PM would send a report my GP, I laughed. Was she joking? What were they going to report?

From August 2011 to June 2012, I was seen a total of 7 hours between Stanford PM and Neurology.

Stanford Neurology said there was nothing more they could do – mind you, they had done NOTHING, not even an MRI despite the visible continued shaking of the arm and the PM diagnosis of the VRSD/CPRS II  – I later found out, Stanford Neurology had ordered an MRI in August 2011, but the MRI was ordered and cancelled with no one telling me at all.

The way I found out? When  I called for my follow-up appointment with Stanford Neurology,  the receptionist told me. Medi-cal has now confirmed the MRI request was submitted and rejected. I had never been told. NEVER.

I have submitted a letter to Stanford asking that hereon forward, STANFORD SHOULD REFRAIN FROM REPORTING  a THING about my health.

2) When I went in to get the results of right foot and ankle MRI – mind you, this being the MRI that I was ABSOLUTELY unable to get any UCSF or Stanford doctor for 3 years- despite the mobility disability and EXTREME PAIN, the Foot/Ankle doctor’s receptionist smiled when she saw me  – ‘you are going to be very happy!’

I knew then that they had found in the MRI the cause of the pain and walking difficulties. Maybe now he’d order a whole MRI of my leg in those spots that I told him hurt so much.

I knew the MRI showed the damage I had pointed to these three years.

Yet, instead, the doctor didn’t mention the chronic tear or cyst found by the MRI.

No, not at all. Not one peep. This from a doctor who continues month after month to damage my credit by showing a pending amount for doctor services not even provided!

No, the only way we learned about this information on my foot and ankle was thanks to a dear friend who drove all the way out to the laboratory herself, and got the films and report.

When I read the report, I literally SOBBED!

3.5 DAMN YEARS!  All the times I had been told they just ‘didn’t know what I had!’ After all kinds of nasty notations about me:

a) Mental Health Problems: yet, no testing, referrals nor even talking to me about any mental health problems. Rather, these ‘mental health’ problems were reported to SSDI, and included in my File.

Instead of asking why I was angry after so long of not being listened to or treated, Stanford threatened to cut off medical access because I had tried in vain to have Stanford find my medical files which they said they had ‘lost’ – Like the lost faxed appointment and MRI requests, Stanford had also supposedly ‘lost’ my medical records.

This was all quite RICH given that I never got any access to those shiny machines and stellar medical knowledge. Instead, myself and my doctor were treated to rude and snickering receptionists who said over and over and over how someone would call me back and never did, or would call the Doctor’s office and never did.

b) Fibromyalgia was something since UCSF even that the doctors kept suggesting, yet, there was ABSOLUTELY  no testing of any sort to confirm nor corroborate this claim. In fact, Stanford and UCSF physicians kept INSISTING that I had pain on both sides of my body – which fit the FIBRO criteria – but was simply NOT TRUE!

In the last appointment with Stanford PM, I insisted in front of two witnesses that they stop, STOP insisting I had pain and symptoms on both sides of my body when it wasn’t true. UCSF had done the same thing.

But, I was also SHOCKED and HORRIFIED why this foot and ankle doctor, who I had trusted and was a colleague of my GP, would simply LIE, and HIDE medical facts from me.

Since I didn’t know he had hidden the facts during our appointment, today, I called to ask that the Dr. call me and provide a complete analysis of the MRI results.

His receptionist was quite surprised to hear the DR. had never given me the results of the MRI.

No, in my appointment with the foot/ankle doctor, he instead suggested maybe I had a ‘pinched nerve’ or perhaps it was CPRS and there was ‘nothing more we can do for you.’

When I asked why it had taken so long to get the test, the Dr. replied that ‘some people think it’s easier to get benefits…’

I was stunned – this man was suggesting that their failures as doctors and institutions pointed to me wanting BENEFITS! Are Doctors and Hospitals now the GateKeepers for Public Benefits?

And, if so, how makes up for their mistaken beliefs that ensure that the patient in fact DOESN’T GET FAIR AND EQUAL ACCESS TO BENEFITS DESIGNED FOR CPRS AND DISABLED PATIENTS? WHO PAYS WHEN THEY MAKE A MISTAKE IN JUDGEMENT?

I told the foot/ankle doctor that he didn’t know me – knew nothing about me or the job I was up for at the time of my injury – who I was as an individual, how hard I had worked my entire life, how excited I was about MY LIFE and OPPORTUNITIES, and WHY WOULD HE THINK THAT ABOUT ME? DID HE KNOW I WAS A FULBRIGHT SCHOLAR, GRADUATED TOP 30% OF MY LAW SCHOOL CLASS?


I was just stunned.


Well, that was not to be the end of my day.

No, next was a visit with my GP who I had seen for over a year. She had been the one who ordered the first MRI after 3 years, and found the significant damage in the spine. She had referred me to the foot and ankle doctor.

What I was to experience next was simply stunning.

I had asked for a longer appointment because I had been having continuing problems with my vision, and in fact, during a recent exam with the eye doctor, when the light went into very edge of my right eye, I nearly threw up and passed out. I was also starting to have some new dystonia and other ‘freezing’ in my arm.

Not having money for medication has meant that my symptoms have begun to dominate my life again, impacting my sleep, ability to eat, and to manage the pain. In the process of the medication moving further out of my system with no replacement, I noticed the numbness in my right hand and arm, and I wanted to talk about the swelling and extreme pain in right leg.

I now wanted an MRI of my right arm.

With the MRI’s we had done already, we were starting to pinpoint the physical issues that were present in my body, and I wanted to have my right arm examined in this way too, to reveal if there was continuing nerve damage.

I asked if we could do an MRI of my right arm.

This doctor who had treated me for over a year suddenly looked at me and said ‘Catherine, what more can I do? I’ve sent you to 4 neurologists – UCSF, Stanford and two in the city – and YOU DIDN’T WANT TO GO TO ANY OF THEM!’

What? What? What?

I was stunned but before I could react, the doctor had left and gone into another patient room.

I simply couldn’t take it anymore, and I broke down crying right there. The doctor’s assistants came in and I said – ‘what is going on here? UCSF – I didn’t even come to this doctor until after UCSF so how could she refer me? Two of the Neurologists that she referred me – 1) refused to even exam me because ‘did I expect him to believe a needle had done that to me?’, and 2) the second Neuro didn’t want to get in the middle with UCSF. Stanford Neurology said there was ‘nothing more they could do and perhaps I should go to the Mayo Clinic!

When the doctor came back, she denied in front of her assistants saying that to me  – basically, calling me a liar, which upset me even more. Here was this doctor I trusted, and she was simply LYING.

What I learned next shocked me.

I had tried to explain to my DR that I had learned that my aunt had been diagnosed with MS. I wanted to know if it was possible I might have MS, and should we do a comparison MRI of my brain given that the last one was in 2009.

I said this seemed important given how FAST the spine damage progressed.

This is when the Dr. told me that, in fact, the UCSF MRI of my spine, neck and brain, had, in fact, SHOWN SPINE DAMAGE!

What? What? What?

Neither myself, nor my father, were told this information by the UCSF GP, EVER.

The UCSF doctor, when we begged to know why UCSF was not doing any testing, or treatment, they said ‘they had no idea what was causing the walking problems’ although they were POSITIVE it wasn’t RSD.’ When I asked why I could not have the MRI, we were told it was ‘political.’

Last week, we went to UCSF to get that 2009 MRI and report.

I had requested that MRI in August of 2011, never given, and then again, in November 2011, when I was told the MRI and report would be ‘sent to me in the mail,’ – it NEVER WAS.

Well, last week, they also refused to give the MRI over, claiming, once again, that they were going to ‘send the MRI and report’ by mail.

We were very lucky that the Radiology Department was able to give us the MRI.

Not only is the spine damage EVIDENT, and never mentioned to us, but, I’ve also learned that I had A CYST IN MY SINUS CAVITY.


To say I have been totally disillusioned with the efforts all these doctors and hospitals went to protect UCSF against Medical Malpractice, even the Administrative Court where I went over and over to seek relief to access medical treatment – its beyond comprehensible.

While I sit here with no food, no money, to think of what I have been subjected, just to protect UCSF, its beyond comprehensible.

My doctor saying I didn’t want to see a Neurologist is beyond belief given the numerous times and documented times I BEGGED to be seen by a Neurologist. I even filed a request for access to a NEUROLOGIST with the State of California, so, for my DR to now suggest I didn’t want to see a Neurologist, was more than I could bear.

I was so hurt, angry, distraught, I am sure there are more notations of what a ‘bad patient’ I am.

Last week, I went to a new Neurologist here in San Francisco. Referred by Medicare. A fresh start, with the new MRI’s and no longer being treated like some crazy woman out for benefits.

The Neurologist listened, then, asked, “have you filed a lawsuit against UCSF?,’ as the doctor asked me to hold my arms out and touch my nose. ‘A settlement?’

The Neurologist asked me to send her the ‘evidence’ of the MRI’s. I did.

I’ve never heard from her again and my calls to her office have gone unanswered.

Each time these doctors choose to protect UCSF and do nothing for me, sending me home with CRPS II, Spine Damage, Ganglion nerve cyst, Sinus cyst, with absolutely no care or concern or follow-up, it feels like a part of me is torn apart.


Let me tell you, this is one of the worst feelings in the world.

I can not help but notice that many CPRS patients deal with this kind of run around. I’ve heard that doctors who treat CPRS HATE these patients, hate their complaints, and many of them, think CPRS is made up!

Like that those doctors who were protecting the BENEFITS, all these trusted medical professionals worried more about UCSF, protecting public benefits and their own asses and nothing about caring, helping, healing or serving me.

In concert, these institutions prevented me from 1) receiving information about my own health and conditions, 2) prevented any further testing, treatment or diagnosis’, 2) failed to provide the appropriate testing to eliminate any other causes, and 3) failed to treat the condition of CPRS-II or spine damage or cysts.

In fact, when I think of how a wheelchair has been denied over and over, despite wheelchairs being issued commonly to RSD patients like myself who are no longer able to walk, the MRI’s we kept requesting and never got, when I think about how we were treated by the public agencies and these institutions who are supposed to protect and help patients, I am STUNNED THIS is CALLED HEALTH CARE.

First, I was injured, and experienced pain levels that were beyond anything – the highest levels of pain on the McGill Pain Scale – and TORTURED EMOTIONALLY, Refusing to help me in PM when I begged and cried in the UCSF Pain Management doctor office, begging them to please help me, the way they told me, laughing, ‘to buy some new shoes,’ and the way they lied, trumped-up mental health conditions, while telling myself and my dad, a psychiatrist, that this was ‘physical, not mental, but we don’t know what it is.’

I think of how on 2 occasions UCSF, instead of reporting the CRPS-II to SSDI, given the special designation of CPRS for people just like me who become disabled within weeks and can no longer work, UCSF lied and said I had a ‘sore back.’

We did not get benefits but instead lived on $561 dollars a month for two years, often, like now again, not having enough food or money for medicine and rent. My SSDI lawyer, despite telling her we were homeless, did not submit an SSI GA request for support, but instead said there was no provisions for someone like me, and never ever spoke to me before my hearing.

I lost good friends, colleagues, jobs while these prestigious medical institutions with SPECIALISTS IN RSD never even BOTHERED TO OFFER THEIR EXPERTISE to help me.

The experience I have been through these last 3 years has shattered many beliefs and faith I had in our country and the people. In the medical system, in doctors.

How much money did these doctors and institutions make from Medi-CARE and Medi-CAL while they lied and hid facts and information?

How much of my life, the life of my family did they take?



This past weekend, I came to terms with the fact that these doctors, these institutions were quite experienced at, and easily able to throw me under the bus, able to delay my care and testing for 3 years to protect themselves from liability.

It is what has motivated me to become a dedicated and serious advocate. I WILL BE SHARING MY STORY, and I WILL BE FIGHTING FOR PROTECTIONS;

A) To create a new system for patients who are INJURED at a hospital, to ensure a third-party is immediately interjected to PROTECT THE PATIENT AND MONITOR CARE OF THE PATIENT INJURED AT A HOSPITAL,


My case is extreme in the legal details since I was injured at UCSF, but, not rare in the lack of coordinated, careful and kind treatment.

I will be exploring what sort of Large Coordinated Effort RSD patients can undertake to ensure that officials and representatives have a CLEAR AND COMPLETE PICTURE OF WHAT IS HAPPENING TO RSD PATIENTS ACROSS THIS COUNTRY, MANY, MANY ARE NOT RECEIVING PROPER, APPROPRIATE AND CONDITION-SENSITIVE CARE..

Many are Veterans and Military who have RSD/CPRS from the line of duty. Many of these good people are now friends, and are inspiring as advocates themselves.


I will add my voice to the chorus of RSD/CPRS patients demanding that CHANGE HAPPEN.


What am I supposed to do?

In my next post, I will be announcing new changes to Letter of Courage – changes that will be in line with the goals described above.

I have sent out letters to Stanford, UCSF, San Francisco Health Plan, Nancy Pelosi, Marc Leno, the Department of Health Services ‘Disparities in Health,’ State of California, and the Civil Rights Division describing exactly what happened to me because many of these people/orgs have been informed since early on in the process.

Documentation of what I have shared here is available  because I FOUGHT TO TRY TO GET THE ACCESS, TREATMENT AND COMPASSION I DESERVED, trying so very hard to be taken seriously, and to get equal access.

I will be sharing my story far and wide and making sure change comes to how RSD and CPRS is treated, how patients are treated.

In 2008, in November, one night as my child and I sat a dinner, me so very sick and trying so very hard to put on a good face for my child, to try with all my fiber to be myself like before the injury, I told my child that I knew there had to be a reason this awful experience was befalling me/us.

When I started Letters of Courage, it was to share my experience with RSD, to share how the condition impacted me as a patient, artist, a woman, and a mother.

I simply had NO IDEA what journey we were going to have to travel.

Well, now, I know that I will be using my skills and talent and intelligence to ENSURE THIS SORT OF TREATMENT NEVER HAPPENS TO ANYONE EVER AGAIN.


Interesting Video with Information for CPRS-1

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I hope its warm where you are.

I was transferring my photo of the day, and this colorful ‘mistake’ happened. It seemed appropriate to this post so I have left it. The original is posted below.

'Winter Skies, From my Window Series,' 2011. Photo by Catherine Herrera. 2011 1 of 1
'Winter Skies, From my Window Series,' 2011. Photo by Catherine Herrera. 2011 1 of 1

Its gotten real windy and the rain clouds are here. I already knew they were on their way. The type of pain in my right arm and leg changes a little before, now, I know the signs. Its a weirdly deep pain, and much more of an attention grabber.

I spent a lot of time in the warm water yesterday, but, there wasn’t much exercise or prayer. Frankly, I could hardly move so I let the water do its thing.

I did think positively because, as I might have explained, I believe in the power of water, both within our body and out, to be a powerful medium of thoughts and actions. The water of my daily soak is a healing companion.

As I am now starting to understand, I probably do have CPRS, probably not CPRS-I, but II, with nerve damage.  I still have not heard from my doctor about the PT’s report they said they were sending her.

Having finally started physical therapy, I can be much more directed in my own work at home. Before, with the constant doubt, and confusion from the doctors due to the complexity of the condition, visits have been very frustrating. I have been asking to see a specialist, but, I kept getting the strange blank stares.

Now, armed with more information, I am able to work as a very dedicated partner in healing, no insurance approval needed.

After a few months of seeing that incredulous face staring back at me, and the horrible emotional strain following those appointments, I realized my health required that I stop putting my self before the doctor as the only source of my healing. This is when I started the mantra, ‘I am the doctor.’

I believe that switch emotionally, and mentally -neurologically- helped me tremendously.

As did my mindset only a few short weeks after the injury, when I had learned the frightening level of pain that CPRS can bring.

'Looking towards Spring, Sage Drying,' 2011, photo by Catherine Herrera.
'Looking towards Spring, Sage Drying,' 2011, photo by Catherine Herrera.


I remember laying in utter pain on the couch. My son was doing his homework, but he too was suffering and stressed. I did my very best to  make dinner, carefully doing everything so as not to cause more pain, but, it didn’t matter, every movement was so painful I was grunting with every movement.

Finally, the meal prepared the best I could, we sat down to eat.

My son was visibly upset. I am sure he was scared. I am his only parent, and seeing me suddenly unable to move like before, was deeply scary for us both. I was having difficulty adjusting myself, but, I knew my son needed my help more.

It was in that moment I made a choice. That evening, I shared with my son that life does not guarantee anything. We do our best, and go about our lives, but sometimes, unexpected changes come about suddenly.

What we do in the face of that challenge makes a world of difference.

I shared with my son (and myself) all the things I gave gratitude, for all I was able to do in my life.

I thought of how I had made the most use of my legs getting myself around, dancing from the time I could, travels to distant places, these legs had carried me many places, and I was deeply grateful at that time that I had been able to do so much of what I had hoped.

I was now required to learn something new, and there were going to be important lessons for us both. (Not the least of which, having better, or, any, medical insurance).

I pledged to him that I would do the very best I could. In place of resisting, I’d lean in, learn all I could about the condition, and give my all to regaining use of my arm.

I didn’t know only a few short weeks later, the pain from walking would completely debilitate my ability to get around. I also had no idea that, soon, I’d be told by the neurologist CPRS doesn’t travel , or that it would be a whole other 2 years before I was seen by a PT.

I know this experience is one so many people have, even with the best of medical insurance.


In researching CPRS, I learned early on about the importance of new discoveries in neuroscience, clues that point to the brain as one of the keys to treating CPRS.

When my physical therapist brought up mirror therapy – which we will try tomorrow on my leg – she also invited me to learn more about the treatment from the Neuro Orthopedic Institute, a site where you can also find out more about the exciting research being conducted for CPRS-1 patients and people with complex pain conditions.

I have noticed a lot of the research on CPRS is coming out of Australia and the Netherlands, and its very encouraging. The NOI group has as its motto: ‘Healthy notions of self through neuroscience knowledge.’ Nice vision, very empowering.

'Winter Skies, From my Window Series,' 2011. Photo by Catherine Herrera. 2011 1 of 1 (2)
'Winter Skies, From my Window Series,' 2011. Photo by Catherine Herrera. 2011 1 of 1 (2)

I will check tomorrow with the PT whether, or how, the nerve damage impacts the diagnosis – does this mean I have CPRS II?

I also took the step today to call my doctor and ask for a new diagnosis in writing based on the work with the physical therapist.

I must admit, I thought my PT appointment was last Friday as that’s been the day of my last two appointments. A very kind message from the PT on Thursday afternoon to find out if I was o.k. and why I missed my appointment, made it clear I had missed my appointment. The automated appointment confirmation message from the hospital stopped just short of the time and date. We rescheduled for Tuesday.

Tomorrow, I will find out more about whether the nerve damage means I have CPRS II.

The reason I asked the PT this question previously is because one can have nerve damage but not CPRS. Since I have only had one recent EMG, during which the pain was apparently so high the technician could not read the report properly. I’ve asked my PT whether my right arm and leg nerves will be tested again. She says only my doctor can make that referral.

In viewing the very helpful material from NOI, I realized the treatments speak to CPRS I. Either way, and for those who have CPRS-I, this video is pretty amazing.


I have become fascinated with neuroscience since this all began, and the research described in this video from NOI points to the incredible resilience of the brain, and its ability to be our greatest partner in the healing process.

I think this encouraging information will give hope to people because, often, in those first few months, the sudden isolation in the first phase of CPRS, is tough, and it can be hard to hold on to hope.

Now, we know from this research, just how important our brain is to healing.

In the video linked below, David Butler shares a pretty amazing fact. The brain not only has the ability to respond to real movement, but also perceived or visualized movement.

This natural neuro activity is the way into the brain with mirror technology, using the brain’s ability to react exactly the same to perceived as to actual movement.

Since I ‘graduated’ during my last therapy session, I will be working with mirror therapy tomorrow. To show my brain the side that works well, and convince my brain its the side with the nerve damage, but without pain, to push the brain on to heal.

I am a little confused by this all, and whether I can heal nerve damage with mirror therapy. It seems nerve damage requires a different approach, but I still do not know much about this all. Let’s see what information I can find out tomorrow.

What’s very cool about the research David Butler presents is that our brain can be helping us the whole remainder of the time we are not seen in the doctor’s office, those deep gulfs of time and space when great fears can creep in.

Early on though, in reading more about the neuroscience, I realized the positive state of my mind was crucial. I must admit, keeping positivity in the face of the medical doubt and delays, and, physically struggling with homelessness and poverty, I lost perspective many times.

Since visits to the doctors were painful encounters, I began to notice the peace in between. To survive mentally, I told myself I was the doctor. Now, I am starting to realize my mantra was not just a mediation tool, but, an actual intuition towards my own brain’s ability to heal.

You can listen and watch David Butler’s presentation on Graded Motor Imagery.

'Light Winter Rain, From my Window Series,' 2011. Photo by Catherine Herrera. 2011 1 of 1
'Light Winter Rain, From my Window Series,' 2011. Photo by Catherine Herrera. 2011 1 of 1


As I mentioned, I have been working with ginger ever since the PT confirmed the nerve damage. I continue to feel overall benefits in my health that I enjoy, and I have noticed over the last week, fewer changes in blood flow on the outside of my right leg.

Yesterday, I had terrible shaking on my right side, feeling so strong, it was like an earthquake was rumbling through, and the nerves through my body were firing off.


Keep that in mind today – we are lucky to have this intuitive healing research available and accessible online. Counting the positives was also a big healing tool, so I often realized how lucky, if one is disabled, to be so in this day and age, when there is thankfully still a world and way in which to participate, for the speed with which patients can connect to each other and experts, and, innovative researchers like those at NOI who are educating doctors and physical therapists from around the world.