Hello everyone,
I am new to this forum. I am 53 and am in excellent health – apart from my neurological issues.
I have had Essential tremor (ET) in my hands from birth. My auntie (my father’s sister) has told me that my paternal grandfather (who died when I was about 5, so I never really knew him) had “the shakes”, so I presume I inherited my ET from him.
Throughout the first 30 years of my life, my ET was not really a problem. It was mild, and in the hands only. I didn’t notice it myself, apart from during stressful situations.
By my mid-30s, however, my shaking began to spread to my head. By my late 30s, more people (strangers mostly) would ask me why I was saying no to their questions. I’d be asked a question and I’d say nothing and they’d think I was saying no. Obviously my head was giving a “no-no” tremor.
I realised, very slowly, that my “shakes” were spreading.
By age 43 my no-no head shaking was getting totally out of control. At 45 I finally got a diagnosis from a neurologist in inner-west Sydney: I now also had cervical dystonia. (My dystonia causes my head to jerk constantly to the right, and of course is a source of great embarrassment to me.)
That same year, in 2009, the same neurologist in inner-west Sydney started giving me Botox shots and, in combination with propranolol, this worked extremely well to control my jerking head.
After a year of the shots, the CD had gone, as had a dystonia in my right arm that had developed with the head CD.
(I believe now I went into remission, but I continued getting the botox every 3 months, thinking it controlled the CD).
From 2010 to 2014 I was very happy with the control over my CD and even the ET.
Then in 2014 I had a minor operation, a double hernia operation, which required a general anaesthetic. It also required the insertion of a small mesh to put the hernia right.
I thought there would be no problem whatsoever, but when I awoke after the two-hour operation, my head jerking was back but now much worse than it had been before I started Botox shots. It also went into violent no-no spasms if I turned my head 10-30 degrees to the right.
The arm dystonia was also back, PLUS my essential tremor in the hands was now much worse after the operation PLUS I have a permanent feeling of (internal) anxiety.
My neurologist cannot understand what exactly has happened.
I’ve had no problem with the mesh.
I continue with the botox but it is now far less effective, often producing erratic results and also often doing nothing to reduce my no-no jerking. (I have been tested for botox resistance and that is not the issue; i.e., I am NOT resistant or developing antibodies to the botox).
My arm dystonia (now in both arms!) and hand shaking is shocking, and my anxiety is terrible.
I am wondering if it may be the general anaesthetic that has caused this problem.
So I would like to ask everyone out there if they have ever had a worsening of their dystonia and/or any tremor after having a general anaesthetic.
I am now feeling very depressed that my dystonia and tremor is now as bad as ever, especially after I had a good 4 years where both had finally got under some sort of control.
Also, can anyone offer their ideas about acupuncture, massage, yoga etc to relieve this awful problem?
And I am considering seeing another neurologist for a 2nd opinion and/or trying another neurologist for botox. Can anyone recommend a neurologist with lots of experience with botox and with CD patients?
And has anyone had DBS for CD that produced a successful result?
Many, many thanks in advance.
J
