Candid Perspectives: Long Road to DBS

Life & the Questions of Living with a Disability

By Ramona Edwards

In March of 2005 I began to have some strange twitching in one arm, only noticeable as I was falling asleep at night.  Rather than going away, it began to get worse, though, and soon it was apparent during the day, also.  My local neurologist, who I was seeing for Restless Leg Syndrome and various other neurological issues, thought I had MS, so she referred me to the MS Clinic at Vanderbilt. 

As that and other illnesses were ruled out, the twitching continued to worsen and soon it had spread to one of my legs.  My neurologist was quite concerned and wanted to send me to Mayo, but after doing some research I declined, due to financial concerns.  So determined was she to help me find a diagnosis, though, that she set me up with a doctor she considered to be the top Movement Disorder Specialist in the country - Dr. Xyz* at Baylor. 
 
My symptoms continued to worsen as we waited for the time of my appointment to arrive.  I was hopeful that he would be able to give me the answers I so desperately desired, though.   About seven months after the initial symptoms began, I traveled to Houston to see Dr. Xyz.  I was questioned thoroughly by one of the young doctors who worked for him, and it was nearing 5 o'clock when he finally came in to talk to me. 

 After asking me a few questions and doing a brief clinical neurological exam, he told me they would like to make a video of my movements.  I agreed to allow them to do this and, once they were finished, Dr. Xyz informed my husband and me that he was diagnosing me with Psychogenic Myoclonus, which he felt was due to stress and depression. 

He gave me a prescription for a medication that he called a "muscle relaxer" (it was Effexor, an anti anxiety medication), recommended that I see a psychologist, and he assured me that, since my illness was psychogenic, my symptoms would not get any worse.  However, he insisted that I would not get any better at all, unless I followed his directions.  He seemed to know that this diagnosis would not be welcomed by us, and we found ourselves wondering if the timing of the video was purposeful, as we would not have allowed it after such a ludicrous statement. 
 
Why did this diagnosis seem so far off base?  For a number of reasons, actually.  First and foremost, Dr. Xyz did not ask any of the standard depression questions during his time with me.  I did not fill out any of the routine depression questionnaires commonly used by medical doctors, nor did they determine a great source of stress in my life. 

Although my husband and I do have a large family, it is run quite smoothly, with less stress than a typical family with 2.5 children.  As a matter of fact, my local neurologist was continually telling me that I was under less stress with my 11 kids than she was with her three.  The second reason that this diagnosis seemed so far off base is that I do not have problems with depression at all, nor have I ever struggled with this.   Family and friends who knew me well were stunned at this diagnosis, knowing that it was not at all accurate. 

Frustrated and discouraged, we returned home..  I continued seeing a MDS (Dr. H*) at Vanderbilt over the next few months, and he eventually told me that I had Conversion Disorder.  The reasoning behind this diagnosis was that my symptoms had changed over the months he was seeing me.  When I asked him why he was giving me a similar diagnosis as Dr. Xyz had, yet telling me the exact opposite regarding my symptoms (his diagnosis was based on the fact that my symptoms had changed, while Dr. Xyz assured me they would not get worse precisely because they were psychogenic), he had no real answer for me..  He was apologetic and compassionate, but my husband and I got the feeling that he had no idea what was going on, thus his determination that I had Conversion Disorder. 
 
At that point, I was determined to give up seeking further diagnoses, although my symptoms continued to progress.  Both arms and legs were involved, and the twitching had intensified and turned into jerking.  No medications alleviated the symptoms, and a few actually made the movements worse.  The time came for a follow up appointment with a MDS at a university a couple of hours from our home and, perhaps as a last ditch effort, I decided to keep the appointment.  I was determined to see no more new doctors after that day, though.  Thankfully, I didn't need to. 

During that appointment, as the doctor watched my shoulders spasm and draw in towards each other, he declared that I had Dystonia.  He went on to distinguish between the different movement disorders and to explain why it was clear to him that my movements were dystonic.  It was when he said, "Dystonia is not caused by stress" that I truly wanted to jump up and hug this doctor!  He assured me that Dystonia was exacerbated by stress, but it was not caused by it.  This doctor was not aware of my previous diagnoses of Psychogenic Myoclonus and Conversion Disorder, yet he was very adamant in his statements about Dystonia not being caused by stress. 
 
Finally having a diagnosis was like having a burden lifted from my shoulders.  And, when my movements finally calmed down for the first time, fifteen minutes after my first dose of Stalevo, I was ecstatic!!  Imagine that - after all this time, I was responsive to levadopa-carbidopa...  The relief was short lived with each dose (almost exactly three and a half hours), so the medication was titrated up to the maximum level.  Over the next few months I continued to see this wonderful doctor (Dr. N* at University of Alabama at Birmingham), but as time went on, the relief I got from medication began to wane.  We were not sure if my symptoms were getting worse or if my body was getting used to the medication, but far earlier than I was expecting, Dr. N* declared that he was referring me to the neurosurgery department so I could be considered for Deep Brain Stimulation surgery for my Idiopathic Torsion Dystonia. 
 
The neurosurgery department did not make such decisions easily, so I began an arduous series of tests to see if they would consider me a good candidate for this surgery.  One of these tests was an extensive neuropsychiatry test, which was intended to rule out possible mental issues that might disqualify me from having the surgery.  I was nervous as I began the testing, having been told that it was to last many long hours.  However, I actually found the process challenging, with an element of fun to it. 

As we finished the memory section of the test, the technician informed me that she had never gotten that far in the test with a patient before.  I thought that meant I had done well, but I could not be certain until I heard from the neurosurgery nurse when she called to give me the decision of the DBS committee.  Their opinion was that I was a good candidate for Deep Brain Stimulation surgery, so, out of curiosity, I asked the nurse how I had done on the neuropsychiatry test.  She said, "You could not have passed that test with any more flying colors."  Ha!  So much for the psychogenic and conversion disorder diagnoses!  I have to admit that I took solace in the knowledge that the doctors who approved me for brain surgery were confident that the diagnosis of Dystonia was not psychological in origin...
 
I had Deep Brain Stimulation surgery two and a half years ago.  The post surgery journey has had lots of ups and downs, with the symptom relief varying widely.  The majority of the time I do enjoy a decent amount of relief with neuro-stimulation added to my medication regimen, and I am very thankful for my "brain pacemaker".  The doctors have not determined the cause of my generalized Dystonia - thus the term idiopathic - but I am finally at a place in my life where I do not feel a need to continue looking for answers to the question of "why me?"  Dystonia is a big part of my life now, having brought blessings along with the daily challenges at times.  Thankfully, I have moved past the disappointment and frustration that came with a psychogenic diagnosis, and I hope that my story will strengthen others to do the same. 
 
**Note** A Google search of "Xyz psychogenic" yields 63,900 hits.  Apparently, he "specializes" in research of psychogenic illnesses. (Sadly, I fear that the video they made of my movements was added to their data bank of research.)  I also read in an article Dr. Xyz wrote to others in the medical field that he assumed patients had gone through all normal modes of testing by the time they were referred to him, thus garnering an almost guaranteed label of psychogenic illness for many referred patients. 

Candid guest writer Ramona Edwards has been married to her best friend for 31 years and they have 11 children.  Her Dystonia symptoms began in March of 2005, at the age of 43.  She was officially diagnosed with Generalized Dystonia in May of 2006 and underwent Deep Brain Stimulation surgery in April of 2007.

 

[Editor’s Note: Names have been changed to purposefully obscure the medical professionals involved. Candid Perspectives articles are intended to reduce emotional isolation among those experiencing all forms of dystonic movements.]

 

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