Spastic Hypertonia following traumatic brain injury

[FeatherMe]

For years following two head injuries I have suffered with what first was called spasms and more recently the episodes have been called stiffenings. I have been frustrated as the doctors that trigger these spells do not listen to me about the head injuries. In Sept. of 1997 I fell headfirst into a glass door when my foot became entrapped under a mat that was not tacked down. About three to six months later, while getting a massage, my right shoulder, arm, and hand went into a stiffening mode - became rigid and unmoveable - my hand looked like a claw. The second head injury occurred in Jan. of 1999. That injury I suffered was more severe than the first. I have no memory of it to this day - just coming to and being cold and wet as I found myself on about 4 inches of ice that covered the parking lot of my place of employment. I had a concussion and a broken arm. I had post concussion syndrome and was out of work for six weeks. The stiffening then became pretty much body wide, mostly sparing my left arm - I am right handed. I had to learn to drive left handed because certain positions of my right arm would trigger a stiffening episode.

I have been laughed at by doctors, humiliated, and made to feel less than human. The last doc I saw, a well known NYC doctor said it was conversion disorder. When I asked why he came to that conclusion, he stammered, " Well, I've never seen anything like that before in my life!" That was really scientific. Just the other day I started researching brain injuries and found an article on spastic hypertonia following TBI and it fits like a glove. One doctor suggested that oerhaps not all neurologists subscribe to this as a diagnosis. I found nothing mentioned on your site about it. What do you understand about this diagnosis? Is it something that is very particular to those who study brain injuries and unknown to say those who study movement disorders? Thank you for your help.

[MG (Admin)]

Was there any actual documented brain damage (e.g. bleeding seen on a CT scan)?

[FeatherMe]

I had no imaging. Yesterday I did have an EEG. I was asked to breathe in short pants. The tech asked if there was anything going on. I told her I had I very brief stiffening which shortly after became body wide. Obviously she saw something happening on her screen. She asked several questions. I was able to answer them all. I'm not sure how long it lasted. As usual my right hand was the last to relax. I don't know when I will hear about the results.

Featherme

[MG (Admin)]

The tech asked if there was anything going on. I told her I had I very brief stiffening which shortly after became body wide. Obviously she saw something happening on her screen.

This is not necessarily true as they often ask you feel during the hyperventilation phase...also changes during this part of the test may have different significance to the rest of the test (e.g. a slow pattern can be normal).
I would advise waiting for the official EEG results...if there was no epileptic activity during the stiffening you describe then it is unlikely that it is due to a seizure.

Let us know what the EEG shows.

[FeatherMe]

I was told there was no sign of seizures. That I can accept but are there not other things that show on the EEG? Besides the question, it was the tone of her voice - not just asking how I was doing. She asked if there was something going on.

[MG (Admin)]

Let us know when you get the official results.

[FeatherMe]

BACKGROUND: This is a continuous waking EEG. A 10 Hz reactive bioccipital posterior dominant rhythm is well established and background frequencies are well sustained and all in the alpha range in the absence of any focal slowing.

ACTIVATION: Hyperventilation and photic stimulation do not provoke any epileptiform paroxysms.

ABNORMALITIES; On several occasions the patient's right upper extremity stiffens in extension and the digits going to a claw-like deformity in the absence of any electrographic changes.

EEG DIAGNOSIS - Normal awake EEG

IMPRESSION: This EEG is within normal limits and several episodes of extremity deformity occurred in the absence of EEG change.

The above is quoted from the final report.

From what I have read this does not eliminate the dx of spastic hypertonia.

The referring doctor called me this evening and believes it is somatization. I strongly disagree. Her reasoning is the same as others - they've never seen anything like it before in their lives. (I have asked for a CD of the video taken of me the day of my exam when I had an episode.) I've asked her to talk to my psychiatrist but that relationship doesn't sound promising from her attitude. She believes he will say it's neurologic and she says it's psychiatric. Seems to me they should each evaluate me in their own specialty! I believe it still to be a result of the head injuries.

I would like to know what you feel about the possibility of spastic hypertonia. Is this a dx for those who specialize in brain injury?

[MG (Admin)]

Spastic hypertonia is something that is easily identified on neurological exam. A neurologist who examined you would be able to confirm or exclude this quite easily.
As you said...it is unlikely that you are having seizures.
Of course I am in no position to judge your psych. state...have you asked your psychiatrist recently about these symptoms after getting these results?

[FeatherMe]

I am waiting to receive a copy of a video taken while I was having an episode at the neurologist's. Is there any way to get a copy to you? My psychiatrist does not agree with somatization or conversion disorder dx.

I had an episode while at PT the other day. I asked her if she would describe my stiffening as effortful as the neurologist did. She said no. She could feel the hypertonicity.

I gave the neurologist an article on spastic hypertonia following traumatic brain injury. She called me the other night. I asked her about it. She never considered it being from my head injuries nor appeared to have any knowledge of SH. She admitted she was new to movement disorders. On the other hand, she also had no knowledge of my emotional or mental health background but that didn't stop her from dx somatization!

[MG (Admin)]

You can upload the video to youtube and post a link if you would like.

[MG (Admin)]

BY the way...does your psychiatrist think you have any psychiatric issues at all?
If so what?

[FeatherMe]

I haven't done the utube thing before but I can give it a try.

My psychiatrist sees me for insomnia.

[FeatherMe]

I have had computer problems. I will try to get the flashdrive uploaded to my computer. Meanwhile I went to a brain injury specialist. He said he can help me but first I have to see a specialist top in the field of multiple sclerosis. He believes that's one dx. He also is sending me to have my neck checked out for being the source of the stiffening episodes. I go back to NYC the end of Dec. and the neck thing the beginning of January locally.

Hopefully I'll have url for you soon.

[MG (Admin)]

ok

[FeatherMe]

Not able to send it for some reason. Meanwhile I was recently told what I have is somatic energy - musculature surrounded by armor from unresolved emotional issues or emotional issues that have been trapped in my body. The trapping I can see. I have dealt with most conscious emotional issues and spiritually received healing. The massage therapist feels body work directed to this in particular will be very helpful. I also do well with an osteopath I see. I do not do well with medications as I have many allergic reactions and suffer severe side effects from others so body work is best. I am looking forward to improved health. Thanks for your help.