Medical – Treatments Given
A. Context
When doctors decide a treatment plan for dystonia there seem to still be very few options.The common ones today are different from earlier eras of invasive surgeries, powerful drugs, psychiatric institutionalization, in a track record of some progress and many setbacks. Today’s treatments include:
-deep brain stimulation – insertion of electrodes into the brain, a reversible procedure
-exercise – referral to physiotherapists
-injections- botulinum toxin, cortisone
-muscle surgery to destroy affected muscles
-pills – muscle relaxants, pills for pain, pills for stress
-radio frequency ablation, radio frequency lesioning
-selective peripheral denervation surgery – cutting some muscles
-spinal fusion
-stereotctic neuorsurgery-
-thyroplasty – for adductor spasmodic dysphonia – uses a titanium binder in the vocal cord
-ventro-oral thalamotomy
-vocal cord surgery
B. History of treatments
1820- Justinus Kerner, German physician sees patients who have dry eyes,
dry skin, gastrointestinal disturbances and weakness after
eating contaminated meat. He calls the culprit sausage poison. It is later
discovered that the condition is due to botulinum toxin, which can lead to
intense sweating, high skin temperature in a condition called botulism.. The
bacterium C botulinum is potent and works by blocking nerve function
and preventing release of acetylcholine in the brain, leading to paralysis
of some muscles. Left untreated the toxin can lead to increased weakness,,
swollen stomach, vomiting and respiratory failure
However the same toxin in later years and purified with small doses becomes
very useful to temporarily relax muscles.
1919 – Edward Schantz cultures the clostridium botulinum and isolates
the toxin. Later two strains of botulinum toxin , A and B, are identified
1924- it is discovered that a bacterium is associated with food poisoning.
In 1897 food poisoning from bad sausage was named botulism.
after the Latin word botulus for sausage. The bacterium is named
clostridium botulinum. It is found to be a neurotoxin, damaging
nervous tissue. It goes between the nerves and muscles and
blocks the impulses, leading to weakness of the muscle or paralysis.
1930- surgeons try a new technique of heating electrodes inserted in part of the brain
to selectively destroy a small area. The pallidotomy procedure is done on
the globus pallidus part of the brain and aims to reduce involuntary movements.
It has however an unpredictable outcome.
1940s- Milton Trager, a medical doctor, tries to direct treatment to the patient’s unconscious mind. The patient is subjected to oscillation and rocking to get him to gradually relinquish control. This technique was called tragering
1950- R. Meyers is the first neurosurgeon to treat movement disorders like
dystonia by creating lesions in the basal ganglia of the brain.
1970s – there have been 7 types of proteins identified in the clostridium botulinum bacteriaand named A – G . It is found that A, B,E and F can create a medical condition called botulism. It is also found that in small doses toxin can be injected in muscles that are tight or in spasm to relax them.
Only type A in marketed as a drug at that time.
1980 Dr. Alan Scott, a San Francisco ophthalmologist found that if a patient had eyes looking different directions, strabismus, (crossed eyes), one way to help them was to cut away the muscle that pulled the eye to one side. However this destroyed the muscle and he found that another way to fix the problem was to inject botulinum toxin to temporarily weaken that muscle. He had an idea then of using the botulinum toxin also on the muscles of people with blepharospasm. This weakened but did not destroy the muscles around the eye for those with eye dystonia.
1980 – Children with severe generalized dystonia are treated with ablation brain surgery
1980s- Quebec neurosurgeon Claude Bertrand has developed a surgical
procedure for people with severe cervical dystonia, where nerves believed
associated with the abnormally contracting muscles are severed while other
nerves to less affected muscles are left intact. This procedure is named
selective peripheral denervation or the Bertrand procedure. However
its effectiveness is not established and some patients in follow up studies
had significant complications.
1989- the US Food and Drug Administration approves use of botulinum toxin
Botox BT-A for treatment of eye dystonia
1990- Deep brain stimulation becomes a possible treatment for severe dystonia
1991 – in North America over 98% of physicians had not heard
of dystonia
1995- Botulunium toxiM Botox trademark developed by Allergan is later used as treatment for dystonia.
2000- the US Food and Drug Administration approves use of botulinum toxin Botox and BT-B Myoblock as treatments for cervical dystonia
2009 – Botulinum toxin Xeomin trademark is developed by Merz as treatment for dystonia
2003 – The US Food and Drug Administration approves the use of deep brain
stimulation as a humanitarian device exemption to treat chronic, intractable primary dystonia including generalized, segmental, hemidystonia and cervical dystonia. It involves placing a medical device to send electrical stimulation to implanted electrodes in the brain.. The results of deep brain stimulation are frequently positive but the mechanism for why it works is not well understood and the control mechanism requires careful programming.
2009 – Botulinum toxin Xeomin trademark is developed by Merz as treatment for dystonia
2014 – Research during PET scans shows the efficacy of some drug treatments for dystonia. Studies show that when a patient taps the fingers, dopamine is released. Brain scans during that motion trace how dystonia involves brain chemicals.
2016- Botunlinum toxin Dysport trademark is developed by Ipsen and used to treat dystonia
2019 -Botulinum toxin Jeuveau trademark is developed by Evolus, Inc. and used to treat dystonia
C. What seems useful to study further
(the description of these procedures is general only)
1. earlier surgeries
Many surgeries to precisely destroy certain areas of the brain that were believed impaired were popular for a while, but with mixed reviews and often significant downsides such as stroke, inadvertent damage to another brain area, or death.
More recently surgery is usually avoided unless there is a significant level of dystonia that impairs function. These newer surgeries seem to have more positive but not uniformly positive success. They are invasive and permanent. Nowadays doctors seem to avoid surgeries as a first response. and try injections or pills first.
2. botulinum toxin
This is one of the most powerful poisons known to man. Its link to botulism was noticed in 1919 and later it was discovered in small doses to temporarily paralyze muscles in ways that might be of benefit. The same toxin used to reduce wrinkles for cosmetic treatment is adapted to use for those with dystonia, to for a few weeks or months make their muscles less tight or less painful.
The mechanism of this toxin, in its various forms, does not seem fully understood. Clinical studies examine strategies, where to inject, with what type of toxin, at what dose, for how long, and the effects. Individual patients report different results from each other for such treatments and differing results from injection to injection themselves. Some clinics use computer guided ways to inject more accurately. The skill of individual doctors at injecting the right place or the right angle is often variable according to patient reports. Many patients report significant improvement of their condition after such injections and some have been having them for 20 years.
The toxin however does not cease being a toxin. Some patients report side effects from treatments and have to weigh the benefits versus the risks. Some patients report high costs of the treatment.
The toxin has been reported to over time lose its effectiveness for some patients. Some find that their body develops antibodies and then the treatment works less efficiently. Such experiences reinforce for some patients that do not really want just a treatment, but a cure.
3. pills
Patients may be prescribed pills for several aspects of the condition, including for muscle relaxation, pain, brain neurotransmitter levels and anxiety. Many report that they are taking several pills concurrently.
It is important to patients that doctors are aware of all the medications they are taking and warn them of possible interactions. Patients express uncertainty at some of the pill regimes they are put on, what to do if they miss a dose, whether they permitted to adjust a dose or if to do so would be dangerous. The answer to these dilemmas may be simply in ensuring that patients have more information.
4.deep brain stimulation
Patients often report positive results from this procedure but some distress heading into it. It may be helpful to ensure they are briefed and reassured ahead of time.
The head is shaved, a hole is bored into the skull and a small wire is inserted into the brain area that regulates movement. Electrodes are inserted in the brain using a wire with a small trip with nodes on it. A cable runs under the skin into the chest where a matchbox-sized battery is implanted. The patient is taught how to calibrate settings for voltage of the nodes to get the desired benefit in the brain. In some cases the patient is also able to recharge the battery.
During the surgery there is noise and the patient is conscious to report effects. After surgery there is at first a lesion effect which heals. Patients return for periodic adjustments of the settings. It is possible to recalibrate the device to make it work better, to relocate it or, if necessary, to remove it permanently. Deep brain stimulation has been used now for many years and has had many positive reviews, but some negative ones. A chapter on effects and side effects follows.
5. spinal fusion
This is an attempt to help those with extreme neck tilt. It involves fusing some parts of the spinal cord so that less tilt is possible. The surgery can improve daily function aligning the head better for speech or chewing. However the fusion may have side-effects of reducing ability to move the head, and it is not clear that the dystonic message has been eliminated for pain or pressure.
5. selective denervation
The goal of this surgery is to prevent some muscles from contracting by cutting some nerves that send messages from the brain for them to contract. The procedure is usually done if other treatments have not been helpful and it is not clear that the cutting the nerves fully ends the message of dystonia. Some clinical studies suggest that the dystonia simply then relocates to other muscles. This surgery is not reversible.
D. oscw
Comments from clinical studies and researchers
about treatments
Treatments for focal dystonia include anticholinergics, baclofen antispastic, relaxants like clonazepam, lorazepam, antidopaminergics
Treatments for generalized dystonia include levodopa, anti cholinergics, antiepileptics and anti tremor medicine
E. Comments from patient experience
Providing literature does not necessarily solve the problem
The doctor swithered back and forth about what treatment to give me
The injections vary. Different pokes for different folks
F. How to ask
Source of question ideas:
clinical studies, patient reports
G. Question categories
types of treatment
treatment – injections
pills – pain, muscle relaxers, mood
pills- logistics – time, dose, number
treatment -splint, brace, orthotics
surgeries
H Questions asked -survey number, question number
surveys 14, 35
I. Results
doctor, tests, treatment
14 39 doc,tests 26 69 88 7
35 6 doc.tests 10 14 83 2
max no. respondents 39
total questions 83
likely type of dystonia all
percent of all respondents doing survey 39 of 508 or 7.7 %
I. Results
(The bracketed item at the end of each question set indicates the survey number and then the question number. eg. 1-3 is survey one, question 3)
1. intro -treatment range offered
-Have doctors told you several treatment options?
51.35% Yes
48.65% No (14-7)
-Did the doctor discuss with you risks and benefits of treatment options?
56.76% Yes they brought it up
10.81% Yes but I had to bring it up
32.43% No (14-8)
-treatments you have been given
73.76% Pills
81.29% Injections
11.40% Surgeries (1-9)
2.pills
-These questions ask about medicines and pills
50.00% I was prescribed pills to relax muscle tension
25.00% I was prescribed pills to adjust brain chemical balance
50.00% I was prescribed pills for anxiety as I deal with dystonia
25.00% not applicable (35-12)
(low number of respondents to this question)
3. pills for pain
-For pain have you taken any of Tylenol, Aspirin, Acetaminophen, Ibuprofen?
37.84% Yes quite regularly
32.43% Yes, but only occasionally
29.73% No (14-26)
-Have you been prescribed painkillers?
27.78% Yes
69.44% No
2.78% not applicable (14-27)
4. pills for muscle relaxation, tightness, spasticity
-Have you been prescribed muscle relaxants?
54.05% Yes
43.24% No
2.70% not applicable (14-28)
-Have you been given antispasticity medications?
27.03% Yes
48.65% No
21.62% unsure
2.70% not applicable (14-31)
5. pills for mood, neurotransmitter adjustments
-Since the dystonia diagnosis were you prescribed antidepressants?
32.43% Yes
59.46% No
5.41% unsure
2.70% not applicable (14-32)
-Since the dystonia diagnosis were you prescribed benzodiazepines?
35.14% Yes
54.05% No
10.81% unsure
0% not applicable (14-33)
-Have you been given drugs to block effects of acetylcholine?
10.81% Yes
45.95% No
40.54% unsure
2.70% not applicable (14-29)
-Have you been given medication for deficiency of dopamine?
24.32% Yes
56.76% No
16.22% unsure
2.70% not applicable (14-30)
6. pills – dose, increases
-Did the doctor tell you risks of changing a prescribed dose on your own?
25.00% Yes
33.33% No
41.67% not applicable (14-35)
-dose
33.33% I was given a precise dose instrucction
66.67% I was given a variable dose instruction- eg take 1 ‘as needed’ or
with some discretion -eg. 1-2 per day
33.33% The doctor explained to me the risks of varying the dose on my own
33.33% The doctor explained to me any risks of skipping a dose
33.33% not applicable (37-3)
(low number of respondents to this question)
7 pills – timing, number
-Are you taking several types of prescribed pills the same day?
36.11% Yes I take some pills for dystonia and some for other conditions
8.33% Yes I take several types of pills for dystonia
2.78% No I only take one type of pill a day and it is for dystonia
36.11% I do not take any pills
16.67% not applicable (14-34)
-types of pills you were prescribed
33.33% The doctor explained to me what the pill is for and how it may help
33.33% The doctor did not explain to me about why the pill was recommended
33.33% The doctor told me about possible side effects of the pill
66.67% The doctor knows or asked what other medications I am taking
66.67% The doctor is aware of my financial situation and tries to find me
medication within my budget
33.33% not applicable (37-2)
(low number of respondents to this question)
-These questions ask about how many different pills you regularly take by prescription for dystonia.
0% I have been prescribed one type of pill only, to take daily
25.00% I have been prescribed 2-3 names of pills to take daily
25.00% I have been prescribed 4 or more names of pills to take daily
50.00% not applicable (37-1)
(low number of respondents to this question)
8. pills- risks
-Did your doctor or pharmacist explain risks of side effects of the medication?
35.14% Yes they always tell me risks
21.62% Yes they sometimes tell me risks
0% I don’t like to hear about risks
13.51% No they do not tell me risks
29.73% not applicable (14-37)
9. pills – interactions
-Did the pharmacist tell you food, drinks or activities to avoid on the medicine you are taking?
16.67% Yes always
19.44% Yes sometimes
22.22% No
41.67% not applicable (14-36)
-When you get a prescription do you tell the doctor what other medicines you are taking?
72.97% I discuss with the doctor all of my prescriptions and whether they interact
40.54% I discuss with my doctor any over the counter medications I take
and if they interact with prescriptions
10.81% I never ask the doctor about interactions of medicine I am taking
16.22% not applicable (14-38)
10. injections- botulinum toxin, dose, frequency, location
-Have you been given injections of botulinum neurotoxin such as Botox, Xeomin, Dysport, Myobloc?
59.46% Yes I take them regularly
24.32%Yes but I quit taking them
16.22% No I have never had them
0% not applicable (14-40)
-What challenges are there with giving you an injection for dystonia?
25.00% The muscles affected are quite deep and hard to reach
9.38% The location of the dystonia seems to change
43.75% There are several locations for my dystonia discomfort
43.75% It is not easy to locate the exact muscles affected
25.00% not applicable (14-41)
-These questions ask about the experience of getting injections
66.67% The injection process works well for me
50.00% Over time the doctor has figured out pretty well where injections
work best for me
16.67% The injections cost me so much money that I have not gotten them
as often as I am medically allowed to
33.33% The injection process seems pretty imprecise in my case
33.33% I am so familiar with the injection process that I refer to it
casually as getting my shots or my jabs
16.67% I have stopped getting injections because they were not working for me
0% I have stopped getting injections because they were too costly
33.33% I have stopped getting injections because of negative side effects
(35-11)
-injection procedures
0% My doctor uses dry needling
40.00% My doctor uses guided injections, with devices to help guide
where to put the needle
0% My doctor uses trigger point injections
20.00% My doctor uses electromyography to guide the injection
20.00% My doctor uses ultrasound guided needle for the injection
20.00% not sure
20.00% not applicable (35-10)
(low number of respondents to this question)
11. injections- other, cortisone
-Have you ever been given cortisone by injection?
19.44% Yes
75.00% No
5.56% not applicable (14-39)
12 -deep brain stimulation DBS
-If you considered having an electrode implanted for deep brain stimulation, how was that experience?
11.43% The doctor explained to me the possible risks and benefits
2.86% The doctor gave me a choice and respected my choice
5.71% The doctor explained the procedure for the implantation
2.86% The doctor explained how to make adjustments of the stimulation
88.57% not applicable (14-44)
13. other surgeries
-If you considered surgery for dystonia, how was your experience?
13.89% The doctor explained the possible risks and benefits of surgery
2.78% The doctor gave me a choice and respected my choice
13.89% I do not like to make permanent changes surgically
5.56% I was grateful to have a chance at surgery
63.89% not applicable (14-43)
-Have you had surgery to sever muscles?
10.81% Yes
67.57% No
5.41% unsure
16.22% not applicable (14-47)
-Have you had surgery to lengthen muscles?
2.78% Yes
77.78% No
0% unsure
19.44% not applicable (14-46)
-Have you had surgery to implant a Baclofen battery-operated pump under the skin?
0% Yes
75.00% No
25.00% not applicable (14-45)
-Have you had selective denervation surgery to weaken nerves?
2.70% Yes
91.89% No
2.70% unsure
2.70% not applicable (14-50)
-Have you had a thalamotomy probe in your brain?
2.78% Yes
86.11% No
0% unsure
11.11% not applicable (14-48)
-Have you had a palidotomy probe in your brain?
0% Yes
88.89% No
0% unsure
11.11% not applicable (14-49)
-other surgeries
16.67% I had muscle release surgery
0% I had deep brain stimulation
0% I had a thaladotomy
0% I had deep brain stimulation devices removed
0% not sure
83.33% not applicable (35-14)
(low number of respondents to this survey)
-Have you had multiple surgeries for the dystonia?
2.78% Yes I have had multiple surgeries
2.78% No I have had only one surgery
5.56% I have had some surgeries and some implants
75.00% have had no surgeries
13.89% not applicable (14-68)
-Have you had a treatment of phenol surgical antiseptic that destroys muscle?
0% Yes
97.22% No
0% unsure
2.78% not applicable ( 14-42)
14. other therapies – retrain brain, relax, exercise, orthotics, brace
-For dystonia have you ever been given a cast or brace or splint?
8.11% Yes
81.08% No
10.81% not applicable (14-52)
-Have you tried an oral orthotic that fits into your mouth?
5.41% Yes
86.49% No
8.11% not applicable (14-51)
-Have you done patterning exercises to repeat a motion to get the brain used to it?
19.44% Yes
69.44% No
11.11% not applicable (14-56)
-Have you been given movement therapy to constrain some fingers to make others move?
0% Yes
83.33% No
0% unsure
16.67% not applicable ( 14-54)
-muscle or brain retraining
6.25% I have figured out what is easy to do and then gradually moved from
that closer and closer to what is harder to do
0% I have tried to build up sensation in my fingers by learning braille
0% I have tried to build up sensation in my fingers by carrying coins in my
pocket or feeling embossed letters on paper
31.25% I have tried doing repetitive gentle movements to just get a stiff
muscle used to moving
25.00% I have tried exercising nondystonic muscles on the other side of the body
as if to get the brain used to activation in that brain area
18.75% unsure
37.50% not applicable (20A-31)
-other medical treatments
0% I have been given a brace for my fingers, hand or arm
0% I have been given a brace for my head
20.00% I have been given a brace for my neck
0% I have been given a brace for my knee, foot or leg
20.00% I have had transcranial magnetic stimulation
60.00% not applicable (35-13)
(low number of respondents to this question)
15. overall experience with treatment options
-What has been your overall experience with treatments and surgeries?
25.71% I have been happy to get treatments and surgeries as needed
11.43% It has taken a long time to arrange treatments and surgeries
28.57% It has been frustrating to have some treatments and surgeries
37.14% not applicable (14-69)
J. Analysis:
The survey questions about medical care have been divided into 3 parts
-consultation with doctors, tests and diagnosis
-treatments offered
-effects and side effects of treatments
This survey is about the treatments offered.
main treatments
injections
The treatment of dystonia currently reported is mainly injection
83.78% reported they had been given injections of botulinum neurotoxin
81.29% reported they had been given injections
59.46% reported they got botulinum toxin injections regularly
pills
73.76% reported they were prescribed pills
70.27% reported taking Tylenol, Aspirin, Acetaminophen or Ibuprofen
quite regularly or occasionally
54.05% had been prescribed muscle relaxants
35.14% had been described benzodiazepines
36.11% said they take some pills for dystonia and some for other conditions
32.43% had been prescribed antidepressants
27.78% had been prescribed painkillers
27.03% had been given antispasticity medications
25.00% had been prescribed 2-3 types of pills to take daily
25.00% had been prescribed 4 or more types of pills to take daily
24.32% had been given medication for deficiency of dopamine
10.81% had been given drugs to block effects of acetylcholine
8.33% reported taking several types of pills for dystoia
2.78% say they only take one type of pill a day for dystonia
surgeries
16.67% said they had muscle release surgery
5.56% had had some surgeries and some implants
2.78% had had only one surgery
2.78% had had multiple surgeries
2.70% said they had selective denervation surgery to weaken nerves
other therapies
31.25% reported doing repetitive gentle movements to get a stiff muscle
used to moving
25.00% reported exercising nondystonic muscles to activate the related brain area
19.44% reported they had done patterning exercises to repeat a motion
8.11% said they have been given a cast, brace or splint
6.25% reported a gradual retraining of dystonic muscles
5.41% said they had tried an oral orthotic
The question about surgeries may need expansion. Some respondents may have been confused about whether deep brain stimulation was considered a surgery or not, since it is invasive inserting of an implant but is a reversible procedure.
The high rate of prescription of pills is consistent with patient anecdotal reports of great challenges managing the regime of taking pills and their interactions and side effects. The survey of effects and side effects may also be of use to study the results here.
patient uncertainty
High rates of patients reported not being certain about what type of medication they were given or even what types of surgeries they had had. This uncertainty may be due to memory over time or lack of adequate personal records. However it may also suggest a more serious concern that the patients were not at any point told exactly what the pill was for, opr what category of pill it was.
40.54% were not sure if they had been given drugs to block effects of acetylcholine
16.22% were not sure if they had been given medication for deficiency of dopamine
10.81% were not sure if they had been prescribed benzodiazepines
5.41% were not sure if they had been prescribed antidepressants
It is not clear if a patient needs to know the nature of the pill. Some may not want to know its classification or the way it works. However addressing lack of information may be useful.
information given to doctor
The lack of information may however be mutual. Some survey questions asked how much the patient told the doctor.
72.97% say they discuss with the doctor all of their prescriptions
66.67% said the doctor knows or asks what other medications they are taking
66.67% said the doctor is aware of their financial situation and tries to find a medication
within their budget
40.54% say they discuss with the doctor any over the counter medications they
take
10.81% say they never ask the doctor about interactions of medicine they are taking
The doctor may not know what the diet of the patient is, or the sleep or exercise regime. The doctor may not know what the alcohol or tobacco intake is, and may not be told of any alternative therapies being tried. The patient may not give this information for various reasons. They may not feel it is medically relevant. They may feel it is private. They may fear that it would be seen as an insult to the doctor that they are trying something else also and they don’t want to hurt feelings. They may feel that the doctor might chastise them .
information given to patient about how the medication or procedure works
Some questions asked about how much the doctor told the patient. In particular in the area of doses, schedules required and risks of drugs, reports varied.
33.33% said the doctor explained what the pill is for and how it may help
33.33% said the doctor did not explain why the pill was recommended
33.33% said they were given precise dose instructions
5.71% said the doctor explained DBS procedure for implantation
2.86% said the doctor explained how to make DBS adjustments
information given to the patient about risks and possible side effects
56.76% reported that the doctor or pharmacist explains risks of side effects
always or sometimes
36.11% say the pharmacist always or sometimes tells them food, drinks and activities
to avoid on the medicine they are prescribed
33.33% said the doctor told them about possible side effects of the pill
33.33% said the doctor explained risks of skipping a dose
25.00% -33.33% said they were told risks of changing a prescribed dose on their own
13.89% said the doctor explained possible risks of surgery
11.43% said the doctor explained possible risks and benefits of DBS
The low numbers who received explanation of risk for some treatments may be inaccurate given that those not offered surgery or DBS may have also felt they should answer the question.
choices given to patients
The issue of choices for patients is complicated. Patients report that doctors may be busy, may not fully explain treatment options. Referrals to specialists are common but access to them may be difficult logistically or financially. The fact there is a choice does not ensure that patients all are able to use it.
Patients who have had dystonia for years sometimes report that they don’t want to hurt the feelings of a doctor if a treatment does not seem to be working. These human considerations complicate scientific decisions about what treatments to give. It is possible that an anonymous survey or 3rd person feedback consultation with a nurse may be useful to remove discomfort and reluctance to be fully honest.
Trusting in the judgment of the patient about dose of pills may be a concern, given that some medications are addictive, and that sudden dose changes may put a patient into discomfort or drug withdrawal. Patients recommended a range of dose, for instance ‘take one or two pills a day as needed” have expressed uncertainty about the meaning. Some report negative effects when changing a dose from one half pill, to two, to one, to one half each day. It is not clear if they were told risks of varying the dose frequently.
66.67% were given variable dose instruction. eg take one ‘as needed’ or with
some discretion – eg. 1-2 per day
Patients reported being given choices for treatments
2.86% said the doctor gave them a choice about DBS and respected their choice
2.78% said the doctor gave them a choice about surgery and respected their choice
The statistics about choice may not be accurate given that not all respondents were candidates for surgery or DBS but they may still have felt they should respond to the question. The proportion of those offered the procedure who were given a choice is likely much higher, possibly nearly 100%. The question is useful however as an indicator that patients do feel they are given options.
overall view of treatment
The surveys of reaction to treatments are in another section of effects and side effects. The question here about the range of options however indicated a range of views.
positive
66.67% said that the injection process works for them and 50.00% said that over time the
doctor has figured out pretty well where injections work best for them
33.33% said they are so familiar with the injection process that they refer to it
casually as getting my shots or my jabs
25.71% said they have been happy to get treatments and surgeries as needed
negative
33.33% reported that the injection process seems pretty imprecise
33.33% reported that they have stopped getting injections because of negative
side effects
28.57% found getting some treatments and surgeries frustrating
24.32% reported that they have quit getting botulinum toxin injections
16.67% reported that the injections cost them so much money that they have not
gotten them as often as they are medically allowed to
11.43% found that it took a long time to arrange treatments and surgeries
A more thorough look at effects and side effects of treatment follows.
Lived Experience With Dystonia 