Lymphedema and Dystonia

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Lymphedema and Dystonia

Postby butterfly » Tue Sep 19, 2006 11:21 am

Hi, just wondering if there is a link with Lymphodema and dystonia? i transient dystonia from birth to about two years in my right foot. I now have my le in left hip leg. Had medical boots for a year or so. Just wondering is there a link ? Thanks.

Lymhpedema and Dystonia

Postby patoco » Mon Sep 25, 2006 12:50 pm

Hi Butterfly

So very sorry I didn't respond to this yet.

If I am understanding dysontia correctly, there should be no clinically viable connection between primary dystonia and early stages of lymphedema.

However, there is clinical evidence that indicates secondary dynstonia can indeed be caused by injury or trauma to the nervious system.

Therefore, it is my opinion (I'm not a doctor, now) that it is possible in stage three lymphedema that dystonia could be triggered. I say this due to several factors.

1.) With late stage lymphedema, in which the tissue fiborisis becomes extreme, the can be/is compression of the nerves in the effected limb. Many, many of us with stage three or the enw stage four lymphedema report peripheral neuropathy problems.

2.) If there has been damage to the nerves because of the severe infections we are prone to, this would be a serious trauma. The earlier you experience the infections, the greater possible damage could occur.

3.) If you have had any type of debulking surgery, there is absolutely an incredible amount of nerve damage.

I would also think that there may be more of a possibility of the transient dystonia that you are talking about with life long lymphedema.


Dystonia is a neurological movement disorder characterized by involuntary muscle contractions, which force certain parts of the body into abnormal, sometimes painful, movements or postures. Dystonia can affect any part of the body including the arms and legs, trunk, neck, eyelids, face, or vocal cords.

If dystonia causes any type of impairment, it is because muscle contractions interfere with normal function. Features such as cognition, strength, and the senses, including vision and hearing are normal. While dystonia is not fatal, it is a chronic disorder and prognosis is difficult to predict.

It is the third most common movement disorder after Parkinson's Disease and Tremor, affecting more than 300,000 people in North America. Dystonia does not discriminate - affecting all races and ethnic groups.

Brief History of Dystonia

Dystonia, like many other chronic neurological disorders, was recognized as a distinct entity only relatively recently. Even before the term "dystonia" was coined, people with the syndrome were being reported explicitly in the literature.

In 1911, Hermann Oppenheim, an esteemed Berlin neurologist who wrote a leading textbook of neurology, was impressed with the variation in muscle tone seen in a neurologic syndrome that he had encountered in several young boys. He coined the term "dystonia" to indicate that "muscle tone was hypotonic at one occasion and in tonic muscle spasm at another, usually, but exclusively, elicited upon volitional movements." The term was widely accepted and has been used by neurologists ever since, even though throughout time, the definition changes. In addition to alteration of muscle tone, Oppenheim also described twisted postures associated with the muscle spasms affecting limbs and trunk, bizarre walking with bending and twisting of the torso, rapid and sometimes rhythmic jerking movements, and progression of symptoms leading eventually to sustained fixed postural deformities.

In 1944, Ernst Herz, from analysis of cinematographic and eletromyographic recordings, regarded slow sustained postures as the best definition for dystonia.

In 1962, Derek Denny-Brown expanded upon this definition and defined dystonia as a fixed or relatively fixed attitude. One problem with using only sustained postures for the definition of dystonia is that it allows all types of abnormal postures to be called dystonia, such as fixed postures that could develop from a stroke. Another problem is that these definitions do not take into account the other types of abnormal movements seen in the disorder.

In February, 1984, a committee consisting of members of the Scientific Advisory Board of the Dystonia Medical Research Foundation met, deliberated, and developed the following definition: "dystonia is a syndrome of sustained muscle contractions, frequently causing twisting and repetitive movements, or abnormal postures." The committee consisted of Drs. André Barbeau, Donald B. Calne, Stanley Fahn, C. David Marsden, John H. Menkes, and G. Fred Wooten. This definition is still utilized.

This committee also proposed a classification scheme for all types of dystonia, recommending that there should be three classification schemes: by age at onset, by parts of body affected, and by etiology. With the advent of discovering different genetic types of dystonia, the etiologic classification was changed at the time of the 3rd International Dystonia Symposium in 1996. The main definition of dystonia will most likely remain the same, but the etiologic classification will change over time as new genetic forms are described.

Primary dystonia is believed to be due to abnormal functioning of the basal ganglia which are deep brain structures involved with the control of movement. The basal ganglia assists in initiating and regulating movement. What goes wrong in the basal ganglia is still unknown. An imbalance of dopamine, a neurotransmitter in the basal ganglia, may underlie several different forms of dystonia, but much more research needs to be done for a better understanding of the brain mechanisms involved with dystonia.

Secondary forms of dystonia arise from and can be attributed to numerous causes, such as birth injury, trauma, toxins, or stroke. Secondary dystonia can be symptomatic and can also occur in association with other disorders such as Wilson's disease. When dystonia is secondary to certain injuries or small strokes, we often find lesions (areas of damage) in the putamen, one nucleus in the basal ganglia, as well as in certain nearby structures. Even though we can see no microscopic abnormalities of the brain in the great majority of cases of dystonia, including those with generalized dystonia, the evidence is so clear in the secondary dystonias that we believe the same part of the brain is involved in all types.

How does dystonia work in the brain?

Dystonia is a disorder that has to do with the way we move. The control of our movements is very complicated and involves many areas in the brain. The area of the brain that is involved in dystonia is called the basal ganglia. The basal ganglia is a deep region of the brain that controls the speed of movement and prevents unwanted movements.

If there is a small change in the way the basal ganglia works, it can cause movements to occur even if you don't want them to. This small change is not found by medical tests or pictures of the brain on an MRI scan. Even if this deep area of the brain is not working the right way and dystonia occurs, the areas of the brain that have to do with thinking and learning work normally. Once researchers understand what the problem is in this part of the brain, they will be able to come up with ways to allow persons with dystonia to control these unwanted movements.

Can dystonia come about overnight? Are there any warning signs?

Dystonia generally develops gradually. Occasionally the dystonia may occur suddenly, as in the acute dystonic reactions related to the administration of antipsychotic drugs. These attacks most commonly affect the head and neck muscles and are usually transient and readily treatable.

Some clinical features may precede the full clinical presentation of dystonia. Eye irritation, excessive sensitivity to bright light, and increased blinking may precede blepharospasm. Subtle facial or jaw spasms, difficulty chewing, changes in the cadence or pitch of speech may suggest early face, jaw, or voice dystonia. Mild jerky head movements, stiff neck, or local neck discomfort may occur in early torticollis. Cramping or fatiguing of the hands during writing, other manual activities, or walking may suggest limb dystonia. Sometimes a local dystonia may seem to arise directly following injury to a local body region.

Can dystonia affect muscles such as the heart or diaphragm?

Dystonia can affect breathing in several ways. Severe neck dystonia can cause difficulty breathing when the upper airway is partially closed off. Dystonia involving the vocal cords can potentially cause shortness of breath when the vocal cords close tight, but in general the tightness is present primarily when speaking. The act of breathing involves muscles between the ribs and a large muscle called the diaphragm. Dystonia can cause stiffness in the muscles between the ribs and can cause a sensation or shortness of breath. Occasionally, the diaphragm can also be affected. Finally, when a person with dystonia has involvement of the spine, twisting of the torso can limit how much the lungs can expand when breathing, and this can potentially cause shortness of breath. The heart muscle is not affected by dystonia.

Is it possible to have focal dystonia of the back, abdomen, bladder or diaphragm?

Dystonia can involve muscles in almost all parts of the body. Although pure back dystonia is uncommon, it certainly does occur. The same applies to abdominal musculature although this is probably seen even less frequently. These forms of dystonia tend to result in the body being pulled to one side, backwards (in the case of back involvement) or forward (in the case of abdominal muscle involvement). The bladder proper is made up of a different type of muscles (smooth muscle) which are not affected by dystonia. On the other hand, the muscles around the opening of the bladder (the external sphincter) can be rarely involved, resulting in difficulty of passing urine. This, too, is an extremely rare phenomenon and probably occurs most often in forms of dystonia complicating other brain diseases such as Parkinson's disease and its treatment than in people with "idiopathic" or isolated dystonia.

Can you die from dystonia?

In the overwhelming majority of people with dystonia, it does not shorten life expectancy or result in death. In very severe, generalized dystonia, affecting all body areas, there can be problems that may arise secondary to the dystonia which can cause medical illnesses. However, these instances are quite rare and usually treatable.

What role, if any, do environmental factors play in dystonia?

The role of environmental factors causing or contributing to dystonia remains uncertain. It is not clear why some individuals inheriting a specific gene develop a severe form of dystonia while many others who have inherited the same gene either never develop the problem or only demonstrate a very mild form (this is what is meant by "variable penetrance" in genetics parlance).

It is possible that unknown environmental factors could play a contributing role in determining whether or not a member of such a family might develop dystonia and, if so, whether it is a mild or severe form. On the other hand, numerous other unrecognized genetic factors may account for these differences. Where no genetic predisposition exists, it is also possible that environmental factors are an important cause of dystonia. However, at this time, the specific nature of such environmental factors is completely unknown.

Can exposure to toxins or specific chemicals cause dystonia?

The answer to this question is clearly yes. This is distinctly different from widespread environmental exposures to which large numbers of dystonic patients could be exposed. A number of uncommon toxins are capable of causing brain damage centered in the motor control region known as the basal ganglia. Dystonia may be one prominent feature experienced by patients with these exposures, but it is extremely uncommon for "isolated dystonia" to be seen in such patients. In other words, the vast majority of patients exposed to toxins (for example, manganeses) have additional neurological problems associated with the dystonia. Possibly the most common feature in such patients is the presence of a Parkinson's disease-like state.

A large number of drugs are capable of causing dystonia. In most cases, the dystonia is transient but in some patients exposed to neuroleptics, such as Haldol, the dystonia may be persistent. This disorder, known as "tardive dystonia," in contrast to dystonia associated with other neurotoxins, commonly manifests isolated dystonia without additional neurological problems.

What is the chance of X-ray therapy generating dystonia?

There are no reports of radio-therapy generating dystonia in any parts of the body.

Can childhood illnesses, such as measles, cause dystonia?

Rarely is dystonia linked to the occurrence of a childhood illness. Dystonia can arise from birth injury, associated with a rare childhood metabolic disorder or following a brain infection such as encephalitis. Subacute sclerosing panencephalities is a rare complication of measles which has been associated with dystonia. In most instances, however, uncomplicated measles does not cause dystonia. The disorders mentioned above usually have other associated features, including cognitive problems, seizures, or other neurologic abnormalities, and do not typically cause only dystonic symptoms.

Sometimes trauma to the head or neck area may cause slippage of the bony spine, particularly in a child. This is called atlantoaxial dislocation and may result in a picture which resembles spasmodic torticollis but is, in fact, not dystonia but an orthopedic problem.

Is there any correlation between general anesthetics and dystonia?

There is not a causal link between general anesthetics and dystonia. Certain types of medication can cause dystonia. The medications most frequently implicated include antipsychotic agents and certain medications used to treat nausea and vomiting. These agents can cause acute and reversible symptoms of dystonia at the time of administration, most often involving the eyes, face, jaw, oral muscles, neck and back, or can produce chronic dystonia following prolonged use, called tardive dystonia. Agents used as general anesthetics are not directly linked to dystonia.

Can the prolonged use of antihistamines, decongestants, or headache medicines cause dystonia?

The medications commonly used for the treatment of headache are not directly linked with dystonia. However, some of the medications used to treat the nausea and vomiting associated with migraine headaches, in particular, metoclopramide (Reglan), are known to cause acute reversible dystonic reactions and tardive dystonia. There have been rare, isolated instances in which antihistaminic agents have been associated with dystonia, which subsides following the discontinuation of the medication. Antihistaminic medications are actually used in some people to treat the symptoms of dystonia.

Could an allergic reaction to a drug cause dystonia?

The term "allergic" refers to an idiosyncratic response to a drug in which the body recognizes the drug as a foreign substance, and the immune system is activated to eliminate the offending agent. Typical allergic reactions to drugs include rash, hives, shortness of breath, dizziness, and light-headedness. Dystonia does not result from allergy to drugs. Prudence in the use of medications is always wise. People should not take medicines unless they have been informed of the risks and benefits of the proposed therapy.

If dystonia is not genetically caused (no family history known), what is the probable cause of childhood-onset and generalized dystonia?

The absence of a clear family history of dystonia does not rule out a hereditary basis for childhood-onset generalized dystonia. Explanations for this phenomenon include mild undiagnosed dystonia in family members and certain types of inheritance (autosomal recessive, X-linked recessive, reduced penetrance of autosomal dominant genes). All these may result in "skipped generations" or indeed in a completely negative family history. It is possible that breakthroughs in genetics may soon allow the diagnosis of hereditary dystonia even in families without a clear family history.

Other conditions may cause childhood-onset generalized dystonia. Some of these conditions are hereditary as well. They are discussed separately from hereditary onset generalized dystonia because they also cause other signs of neurologic dysfunction such as seizures, mental retardation, weakness, coordination, and other difficulties.

These conditions are diagnosed with various tests such as brain scanning, blood, urine, and other tests. Lastly, childhood-onset generalized dystonia may result from a brain damage resulting from head trauma, lack of brain oxygen, stroke, or exposure to toxin. Your doctor will determine to what extent testing should be performed to try to explain the occurrence of dystonia in childhood.

Can neurofibromatosis cause dystonia?

Yes, neurofibromatosis is a condition of many small brain tumors that may cause dystonia.

If you are not born with dystonia, what causes it to manifest itself later in life?

It is quite rare to see someone "born" with dystonia, manifesting symptoms at the time of birth. Childhood-onset dystonia associated with the inherited form of dystonia begins in early childhood after a period of normal physical development and often initially involves the leg and foot. In adult-onset dystonia, the onset is typically in the 40's following decades of normal physical function. The reason for the appearance of dystonia after initial normal development and function is not known. It is thought that in some people there are external factors which may trigger the dystonia, but specific triggers have not yet been identified.

Can dystonia be caused by a injury?

To date, there is some evidence to support a role of trauma including injury to the head or other body parts.It makes sense that if these factors can influence genetic forms of dystonia, they may also be important to other forms of primary dystonia where there is little or no genetic influence. Studies of these questions require accurate and detailed evaluations of the past histories of large numbers of patients as well as unaffected individuals or "controls." One reason for pursuing these issues is that it is well established that trauma does occasionally result in some forms of well-established "secondary" dystonia.

For example, closed head injury can sometimes result in severe dystonia. Typically in these cases, the injury has been severe enough to result in damage to the basal ganglia, which can be visualized on brain imaging studies. Direct injury to a limb may also result in severe dystonic postures. The mechanisms underlying this "peripheral injury-induced dystonia" are poorly understood.

It appears from the literature that people who are carriers of the gene for dystonia may be more likely to have trauma as a triggering factor for the development of dystonia. When people have an injury and then develop dystonia in that body part, you are tempted to say, "There must be some relationship between the trauma and the dystonia." There are legal aspects of trauma-induced dystonia that have to be dealt with as well. It's a gray area at this point. It may be that there is a triggering factor, but we're really not clear as to why some people who have the gene manifest the symptoms and some do not.

Is dystonia a sensory disorder?

On first appearance, dystonia is a movement disorder. It is characterized by abnormal postures and movements. Sensation seems normal. There are clues, however, that sensory function may not be completely normal and that sensory features are important. Since the sensory system is an important influence on the motor system, abnormalities of the sensory system could be relevant in causing motor dysfunction.

Sensory tricks can relieve a dystonic spasm. The most commonly noted is the "geste" in spasmodic torticollis where, for example, a finger placed lightly on the face will neutralize the spasm. Such tricks are seen in all forms of dystonia. Pressure on the eyelids might improve blepharospasm, a toothpick in the mouth might relieve tongue dystonia, and sensation applied to parts of the arm might improve a writer's cramp.

On the other hand, sensory stimulation might trigger dystonia. This might be called a reverse "geste." Examples include a tart taste producing tongue dystonia or a loud noise producing spasmodic torticollis.

Sensory symptoms may well precede the appearance of dystonia. Common examples would be a gritty sensation in the eye preceding blepharospasm and irritation of the throat preceding spasmodic dysphonia. Photophobia is an example of distorted sensation.

Abnormal sensory input might well be a trigger for dystonia. Trauma to a body part is often a precedent to dystonia of that part. A blow to the head might precede torticollis, irritations of the eye are common in blepharospasm, and a deep cut of the hand might occur just before writer's cramp develops.

There may be an important problem with the processing of muscle spindle input. In patients with hand cramps, vibration can induce the patient's dystonia. Cutaneous input similar to that which produces the sensory trick can reverse the vibration-induced dystonia. Conversely, both action-induced and vibration-induced dystonia can be improved with lidocaine block of the muscle, which will reduce sensory input.

The brain response to somatosensory input is abnormal in dystonia. This can be demonstrated with PET studies and evoked potential studies using EEG. In addition, studies of sensory receptive fields of neurons in the thalamus in humans with dystonia show expanded regions where cells all respond to the same passive movement. Mapping of the location of cortical sensory areas of the different fingers is abnormal in dystonia, and this is potentially consistent with the idea that there is abnormal cortical plasticity.

Lastly, there is some evidence that there might, in fact, be subtle abnormalities of sensation in patients with dystonia. The best evidence is for an abnormality of proprioception, the sense of movement of body parts.


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Postby butterfly » Tue Sep 26, 2006 6:50 am

thanks Pat- i see it is rare to be born with dystonia like I was. My foot is perfectly normal now. I just wondred if the dystonia could have caused a malformation of the hip, in turn affecting the maturation and growth of the lymph node on that side hence my le since 21. My le nurse said my lymph ingroial?! node on the right side might not be fully developed or immature etc. So my lymphosinticraphy should show this she said. Thanks for all your hard work posting up this info . I really appreciate your support and info Pat.

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