Botulinum Toxin – Infodystonia

Swallowing difficulties can be a side effects of Botox injections, when treating neck dystonia, tongue dystonia, jaw dystonia and voice dystonia. It can occur in the most expert pair of hands as the response to Botulinum toxin varies among patients…

What is important to know?

Some patients experience swallowing difficulties after Botox injections, due to the spread of the Botulinum toxin to adjacent muscles. Dysphagia (swallowing difficulty, choking on food and/or fluid) is the most serious local side effect, following Botox injections. It can occur in the most expert pair of hands as the response to Botulinum toxin varies among patients. A given dose of Botulinum toxin will be not enough for some patients, but for others it will too much, responsible for spreading to muscles next to the injection site.

Side effects occur most often 10 days after the injection, but may occur earlier, 2 or 3 days after injection. All the side effects are transient, lasting on average 4 to 6 weeks after the injection.

You can be reassured that all the side effects disappear completely with time.

How it happens?

Green arrows represent the Sterno-cleido-mastoid muscle (SCM)

Red arrows represent the strap muscles

Blue dot represents the Hyoid bone

1- Dysphagia following neck muscle injection for cervical dystonia

a- Dysphagia can follow injections into the front neck muscles, the sterno-cleido-mastoid (SCM) muscles. When these big muscles in the front of the neck are injected, some of the Botox can leak into the surrounding muscles, called the strap muscles. These strap muscles act on the hyoid bone, which is attached to the bottom of the tongue. Normally the strap muscles keep the hyoid still and allow the tongue to push the food back into the throat to trigger the swallow. If the muscles are weak, it does not happen properly and patients can get a feeling of choking, worse with solid food. These swallowing difficulties after SCM injections are more frequent if both sides (right and left SCM ) are injected, if large doses are injected, if the neck is very slim.

b- The injections of the Longus colli muscles for severe antecollis (dystonic flexion of the neck). These muscles are found deep in the neck and are very close to the muscles of the gullet, responsible for pushing the food down towards the stomach. If the injection is put in too high up, the ability to push the food down can be reduced; this is usually a problem with swallowing solids. We usually avoid this happening by testing that we are below the swallow muscles during the injection by performing the injection under EMG (recording of the muscle activity), to check when the patient is drinking, just before the injection, that the needle is out of the pharyngeal constrictors.

2- Dysphagia following tongue muscle injection for tongue dystonia or following mouth floor muscles (supra-hyoid muscles) injection for opening jaw spasms is frequent. The reason some people struggle with swallowing after this injection is basically the same as after SCM injections and the weakening of the strap muscles. The mouth floor muscles and the bottom of the tongue muscles are attached on the hyoid bone. The power of the back of the tongue is reduced and the ability to push the food backwards, towards the top of the gullet, and trigger the swallow reflex is impaired.

3-Dysphagia , following laryngeal (voice box) injections, is mainly when drinking fluid and are usually mild. Apart from making a sound for speaking, the main function of the vocal cords is actually to protect the lungs from things falling into them. When Botox is injected into the vocal cords from the front, the closing action is weakened. In most patients this does not cause a problem but some people find that they have an increased tendency to cough when drinking fluids. Very rarely it can also affect eating solids.

Drawing from website on swallowing difficulties after stroke, which explains how aspiration pneumonia can happen.

http://www.strokerehabunit.ie/en/AboutStroke/FeedingandSwallowing/

What to do if you have a problem with swallowing?

As with all Botox side effects, the problem will get better with time. The average length of side effects for most people is a couple of weeks but some will have less and some more. There are many ways to help yourself during this time.

1-Take small mouthfuls and chew carefully before trying to swallow.

2- If food feels like it is slow to go down, keep a glass of water nearby to help wash down the food.

3-Consider eating softer consistency food (thick soup, yoghurt, mashed vegetables) for a short while, avoid crusts, large pieces of meat and anything very hard. Eating in front of somebody and not alone is recommended.

4-If swallowing fluid is making you cough, make sure you are sitting up when drinking. Sip slowly through a straw as this allows you to keep your chin tucked down and this makes it more difficult for the liquid to spill into the voice box. Sucking ice/ice lollies can get you quite a lot of fluid but as it is delivered in very small amounts does not cause any coughing.

5- If food/drink enters the wind pipe and goes into the lungs frequently, a serious infection may result, called aspiration pneumonia. Also you may not be able to eat or drink enough, so please make sure you get in touch with your GP or the doctor who injected you, as very occasionally patients will need to be admitted to hospital to be fed through a tube for a few days.. This is very rare and in our experience has happened to less that 1 patient per year

What to do to avoid the side effects at the next session of injections?

1-Swallowing difficulties, which can exist before the injections, have to be reported to your doctor, before the injection.

– It has been shown that patients with already swallowing difficulties before injection, due to their dystonia, are more at risk of severe dysphagia with Botulinum toxin treatment.

– Swallowing difficulties are frequent before any treatment in cervical dystonia, (from 36% clinically to 72% when investigated), in spasmodic dysphonia and in oro-mandibular dystonia.

– The Speech and Language Therapist may x-ray the mouth and throat area to see what the precise swallowing difficulties are. This x-ray is called a videofluoroscopy. This x-ray will help to determine what types of food and drink are safe to swallow and what dysphagia therapy might be appropriate.

– Studies showed that Cervical dystonia patient with dysphagia can have difficulty to drink only 1-10ml in one attempt, in contrast with non-dyphagic patients with cervical dystonia who can drink 20 ml in one attempt.

2 -The injections have to be customised:

a. If already dysphagia, the doses into the front muscles should be limited.

b. At a session of injection, following severe dysphagia after the initial injections, the injection sites and dosages should be adjusted to avoid the reoccurrence of any side effect.

c. It may also require delaying the injection more than usual, 14 weeks instead of 12 weeks for instance, to avoid any cumulative effect.

3-The dysphagia has to be documented:

It’s very important that the patient documents precisely the nature of the side effect, (for instance, choking on fluid or on food, need to drink to wash down the food after eating), in particular if the patient is not seeing his doctor in between 2 sessions. A dairy of the events will be very helpful for the doctor when adjusting the next dose.

Conclusion

Dysphagia is frequent before injections in patients with dystonia, but can also be a local side effect of the Botox injections. Being cautious when drinking and eating, and talking to your doctor are the best advices. It can be a scary time, but it will all go back to normal after 3 to 6 weeks time .

Also it can be avoided the next time, so it should not discourage you for having further injection.

I wanted to thank my collaborator, Ms Lucy Hicklin, ENT surgeon, a specialist of Botox injection into the vocal cords for spasmodic dysphonia and into the Longus colli for antecoliis for her contribution to this post.

References:

Oropharyngeal swallowing in craniocervical dystonia. Ertekin C, Aydogdu I, and al, J Neurol Neurosurg Psychiatry. 2002;73:406-411

The swallowing side effects of botulinum toxin type A injection in spasmodic dysphonia. Holzer SE, Ludlow CL. Laryngoscope.1996; 106: 86-92

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Droopy eyelid, double vision..after Botox injection, what to do?

May 12, 2012June 17, 2015Dr. Marie-Hélène MarionLeave a comment

Double vision, droopy eyelid, tearful eye can occur in the most expert pair of hands as the response to Botulinum toxin varies among patients…Dr Marie-Helene Marion tells you the facts behind these side effects and what to do when they occur . Dr Marie-helene Marion will also share her tips to avoid them…

Botulinum toxin injections can cause side effects due to the spread of the Botulinum toxin to adjacent muscles.

They can occur in the most expert pair of hands as the response to Botulinum toxin varies among patients. A given dose of Botulinum toxin will be not enough for some patients, but for others it will too much, responsible for side effects.

Side effects occur most often 10 days after the injection, but may occur earlier, 2 or 3 days after injection. All the side effects are transient, lasting on average 4 to 6 weeks after the injection. You can be reassured that all the side effects disappear completely with time.

1-Droopy eyelid

-Droopy eyelid (ptosis) is due to a spread of the neurotoxin to the middle part of the superior eyelid, into the Levator palpebrae muscle. This muscle is responsible for holding up the eyelid. The ptosis, can be mild, covering the top of the pupil only, or more pronounced covering half the pupil; very rarely the eye is completely closed. It happens after injection of Botulinum toxin around the eyes (eg for Blepharospasm or Hemifacial spasm).

– What to do?

Iopidine 0.5% (Apraclonidine) eye drop can be used to decrease the ptosis, inducing a contraction of a small eyelid muscle (the Muller muscle), which lift up the eyelid 1-3 mm. Two drops of Iopidine , 3 to 4 times a day for the 2 to 3 weeks is the usual dose; the effect can be seen 30 minutes after administration of the Iopidine drops and lasts about 2 to 3 hours. It’s used for the treatment of Glaucoma (high intra ocular pressure). It can be responsible for redness of the conjunctiva after 1 week, and for dry eye and dry mouth. It should not be used as a long term treatment, more than 1 month. It’s contra-indicated in case of kidney failure, recent heart attack, heart failure, angina, stroke and high blood pressure

–The ptosis is different from a droopy eyebrow, which can occur after injection into the forehead for cosmetic injection or facial sweating, and which closes the eye by making the eyelid looking “ heavy”, increasing the skinfold of the upper eyelid. Iopidine eye drop is not useful in this case.

2– Double vision and blurred vision

-Double vision (called Diplopia) is due to the spread of the Botulinum toxin into the muscles which move the eyeball; if one of these oculo-motor muscles become weak on one side, the patient will see 2 images instead of one, when looking with the 2 eyes; the double vision will disappear when looking with only one eye; the movement of the 2 eyes are no longer synchronous. B lurred vision is often from the same mechanism but less marked, so the image seen by the 2 eyes is blurred.

– 2 types of double vision:

-If double vision comes from spread of the Botulinum toxin injected into the upper lid, the 2 images will be one above the other, (vertical diplopia) and the weakened muscle will be the Superior Rectus in the middle part of the upper eyelid.

-If double vision comes from spread of the Botulinum toxin injected into the lower lid, the 2 images will be one above the other (either vertical or oblique diplopia). The weakened muscle will be the Inferior Oblique, in the medial part of the lower lid.

–What to do?

Double vision can very disturbing, a source of headache and falls as the edge of the pavement, for instance, will be difficult to appreciate. Therefore the patient with double vision has to be careful when walking, and can either cover one eye, or ask his optician for a prism to attach on one side of his glasses to correct the oculo-motor imbalance. It will also disappear spontaneously in 4 to 6 weeks.

3- Tearful eyes.

Tearful eyes are due to dysfunction of the evacuation of the normal tear production by the tear duct, situated on the edge of the lower lid in the corner near the nose. If the lower eyelid is too saggy, the tear duct is no longer facing the inside of the eye and cannot drain the tears. It can be source of blurred vision.

4- Exposure keratitis

– Exposure keratitis is due to difficulty to close completely the eye (lagophtalmos). If the pretarsal injection of Botulinum toxin into the upper lid is too strong for the patient, the eye can be wide open with decreased blinking and difficulty to close completely the eye at night. The eye becomes dry, sore, red, irritated by any dust or other foreign bodies, which are usually cleared from the surface of the eye (cornea) by blinking.

– What to do?

Artificial tears during the day, ointment at night, protection of the eye from the wind by wearing large glasses, and closing the eye at night with an eye pad are the protective measures to avoid keratitis.

5- What to do to avoid the side effects at the next session of injections?

– Customize the injections:

a. At the next session of injection, the injection sites and dosages should be adjusted to avoid the reoccurrence of any side effect.

b. In case of ptosis, the injection can be distanced from the middle part of the upper lid.

c. In case of diplopia or tearful eye, the injection of the medial (near the nose) lower lid site will be avoided.

d. It may also require delaying the injection more than usual, 14 weeks instead of 12 weeks for instance, instead of decreasing the dose too much. A low dose could have no side effect but also have no effect on the dystonic spasm.

-Document the side effect:

Therefore, it’s very important that the patient documents precisely the nature of the side effect, in particular if the patient is not seeing his doctor in between 2 sessions. Pictures of the face for the droopy eyelid, description of the double vision at the time of the event, will be very helpful for the doctor when adjusting the next dose.

Again, every patient responds differently to the injections, and it may take sometimes 2 or 3 sessions, to customize the injections in order to achieve an optimal benefit without side effect.

Don’t lose hope! The side effects never last and the injections will eventually be tailored to your own condition, fitting you like a dress from a haute couture salon!

Botulinum toxin has transformed the treatment of focal dystonia.

December 8, 2011June 17, 2015Dr. Marie-Hélène MarionLeave a comment

Botulinum toxin (Botox) has transformed the treatment of focal dystonia over the last 25 years. Dr Marion lectured at the SENA meeting about the contribution of Botox to neurology…

South of England Neurology Association (SENA)

The 2nd December, St George’s Hospital

Botulinum toxin (BTX/ Botox) has transformed the treatment of focal dystonia.

Dr Jeff Kimber, neurologist organised The South of England Neurology Association (SENA) meeting, hosted this time at St George’s Hospital, London. In the morning session, several talk were on movement disorders. Dr Salah Omer gave a lecture on Progressive Myoclonic Epilepsy, and Dr Bridget Mcdonald adressed the questions of the long term prognosis of cerebral palsy. I gave a lecture on the contribution of Botulinum toxin to Neurology over the last 25 years.

In 1985, I remembered as a research fellow running a clinic dedicated to patients with cervical dystonia for which the only treatment was anticholinergic drugs (triheyphenidryl, procyclidine), physiotherapy and peripheral denervation surgery (cutting the nerves of the neck muscles). Patients with focal dystonia have always a major functional disability as the dystonic spasms are triggered by action. Oromandibular dystonia is the source of chewing or speaking difficulties. Blepharospasm can lead to functional blindness. Writer’s cramp stops the patient writing. Cervical dystonia interferes with walking, writing, working in front of a screen. Spasmodic dysphonia makes talking on the phone an impossible task…

Botox treatment has been a revolution for these patients, giving them a relief and the possibility to carry on their daily activities.

It’s important to inform the public and the funding body in healthcare profession that Botulinum toxin is not a beauty cream but a major therapeutic tool and that every department of neurology should be given the resources to offer this treatment to their patients.

Marie-Helene Marion

London Btx Centre

More than a wink!

December 7, 2011June 17, 2015Dr. Marie-Hélène MarionLeave a comment

A little twitch under the eye (Benign Eyelid Myokimia)

It’s not rare to have a jumpy lower eyelid when tired. It comes and goes, it’s upsetting when trying to read or when talking to somebody; it’s worst when drinking too much coffee, lacking of sleep or being under pressure. It’s called Benign Myokimia and it usually disappears without any treatment after rest and relaxation. Don’t hesitate to talk to your GP if it persists.

A spasm of one side of the face (Hemifacial spasm)

Less commonly the twitch in the eyelid continues and spreads to the upper lid with a tendency to close the eye. It also spreads very gradually to the cheek, and to the corner of the mouth, which starts twitching at the same time. The person looks like winking to somebody with the sudden eye closure and the cheek pulled up. Of course it’s very embarrassing in public and can lead to some misunderstanding!

Life with Hemifacial spasm.

It interferes with daily life activities like reading. Patients find very tiring to cope with the facial spasm every day. It is worst when going to bed and falling asleep. Every muscle on one side of the face can be jerky from the forehead (Frontalis) muscle to the muscle of the skin of the neck ( Platysma). Patients often are embarrassed when meeting people for the first time. It’s more than a wink!

The diagnosis of hemifacial spasm is not always easy!

The spasm is intermittent and often not present during the clinic, like the toothache disappears when sitting in the dentist ‘s chair! The trick is to stretch the muscles of the face to trigger the facial spasm; I ask the patient to do a forceful smile or to close very tight the eyes for few seconds; following these stretches, the facial muscles start to jump on one side of the face. The diagnosis is then much easier for the doctor.

Why one side of my face is jerky?

The facial muscles on one side become too active, due to an irritation of the facial nerve on the same side. The irritation is most often due to an artery, which forms a loop and rubs against the facial nerve.

What is the treatment?

Botulinum toxin injections are indicated at the first line treatment for hemifacial spasm, as the side effects are very limited and always transient. The results are very good in 80% of the cases. The limitation of the injections is the necessity to repeat them every 4 months and the difficulty to control severe spasm around the mouth without changing the smile.

The surgeon can put a pad of Teflon between the vessel and the nerve to separate them; this surgical treatment calls vascular decompression and is performed by neurosurgeon, trained in this type of surgery. It is usually discussed after having tried Botulinum toxin treatment.

Few words about me… Dr Marie-Hélène Marion

November 26, 2011June 17, 2015Dr. Marie-Hélène MarionLeave a comment

Few words about me…

Dr Marie-Hélène Marion, specialist in Botox treatment for 25 years.

My name is Marie-Hélène Marion and I am a consultant neurologist, specialized in the use of Botulinum toxin (also called Botox) in Neurology. I started blogging 2 months ago about Botox, Dystonia and Hyperhydrosis and I enjoyed every minute of it. Of course at the beginning I had some hesitations, but quickly I realized that blogging for patients and talking to patients during a clinic, have a lot in common, except that you don’t know and you don’t see the reactions of your readers.

My training

I studied medicine at the University of Clermont-Ferrand in the heart of the beautiful volcanic region of Auvergne. Then went to Paris to study Neurology as an “ Interne des Hopitaux de Paris” in the most prestigious departments of that time and in parallel studied Neuro-pharmacology (how the drugs work in the brain)

Then I started to have itchy feet and went to London to specialize in movement disorder as a research fellow under Professor David Marsden for 2 years. His passion for Parkinson’s disease, Dystonia and the all field of involuntary movement was contagious and never left me since.

My work as a movement disorder specialist on both sides of the channel

I went back to Paris in September 1986 to work as a Chef de Clinique and pioneer in France the use of Botulinum toxin in Neurology. Then in 1998 I crossed again the channel to follow my Australian husband and worked for 12 years at St George’s hospital, in London, running Movement disorders clinics and various Botulinum toxin clinics. At St George’s I still run a clinic specialized in excessive sweating, in particular facial sweating and hands sweating, and a clinic for voice disorders and severe bent neck.

The London BTX Centre

Now my main clinical activity is at the London BTX Centre in Sloane Square that I founded 6 years ago, dedicated to the treatment of focal dystonia, (Blepharospasm, Cervical dystonia, Jaw dystonia, Writer’s cramp, Musician’s cramp), Hemifacial spasm, Facial palsy, Tremor, Bruxism and excessive sweating.

A special mention for patients with voice disorders who are seen in a joint clinic, unique in London, with an ENT-voice specialist (Ms Lucy Hicklin) and a neurologist (MH Marion).

Dr Marie-Helene Marion (neurologist) and MS Lucy Hicklin ( ENT surgeon, Voice specialist)

Academic interests

In parallel, I pursue academic projects in the movement disorders field and published this year on Parkinson’s disease and also on complex cervical dystonia with my junior colleagues at St George’s Hospital. I recently organized the British Neurotoxin Network (BNN) which gathered all the clinicians over UK who are running Botox services for neurological conditions.

I am a regular invited speaker in international meetings on the field of movement disorders and organized workshops on the use of Botox treatment in neurology, as European expert in the field.

There is more than one Botulinum toxin!

November 10, 2011June 17, 2015Dr. Marie-Hélène MarionLeave a comment

There are 4 different botulinum toxin brands available in UK; let’s Dr Marion guide you through the pharmaceutical maze of the botulinum toxin.

Various names and abbreviations are attached to Botulinum toxin. I hope these explanations will make reading and listening about the topic less confusing….

– Botulinum toxin is called a Neurotoxin as it’s a toxin, which is active on the nerve, controlling the action of the muscles or the secretion of the glands.

-Botox is often used in newspaper, magazine and on Internet as a generic name instead of Botulinum toxin. BOTOX is one of the brand names, registered as a trademark, and it uses inappropriately like Kleenex for facial tissue paper.

-There are 3 Botulinum toxins type A (BOTOX, DYSPORT, and XEOMIN) and 1 type B (NEUROBLOC), available in UK for therapeutic uses. The FDA (Food and Drug administration which is a regulatory body for drugs in USA) has decided to give 4 different chemical names to each of these brands, as there is no standard equivalence between the numbers of units of these brands. Ona-botulinumtoxinA for BOTOX, Abo-botulinumtoxinA for Dysport, Inco-botulinumtoxinA for Xeomin, Rima-botulinumtoxinB for Neurobloc.

-To add to the complexity of the story, the abbreviations are also changing. We used commonly Botox, BTX, and recently we have been asked to use BoNT-A (pronounce Bonte) and BoNT-B by the scientific community!

But don’t worry too much! Despite or because of all these various labels, neurologists communicate well between each other about the treatment of their patients.