Permanent eyelid drooping (ptosis)?

Hi all,

Has anyone here suffered from a permanent lid droop? I was born with congenital ptosis (a weakened eyelid muscle) that gave me a droopy eye growing up. I had surgery at 25 and while my eye looked great, I couldn’t stop frowning. I ended up getting botox to stop the frowning because I was getting headaches 24×7. A few days later my lid dropped – I was told it was temporary and unrelated, but it never came back up and I had to have 2 more surgeries to correct.

My case baffled my opthamologist, plastic surgeon, etc. and they don’t believe it was the botox, rather a complication from the surgery.

I am still frowning and have very prominent “11s” and was considering trying it again. Curious if anyone else here has experienced a permanent lid droop?

Appreciate any stories and hope all of you recover soon from your complications!

 

-Kris

Permanent eyelid drooping (ptosis)?

Hi all,

Has anyone here suffered from a permanent lid droop? I was born with congenital ptosis (a weakened eyelid muscle) that gave me a droopy eye growing up. I had surgery at 25 and while my eye looked great, I couldn’t stop frowning. I ended up getting botox to stop the frowning because I was getting headaches 24×7. A few days later my lid dropped – I was told it was temporary and unrelated, but it never came back up and I had to have 2 more surgeries to correct.

My case baffled my opthamologist, plastic surgeon, etc. and they don’t believe it was the botox, rather a complication from the surgery.

I am still frowning and have very prominent “11s” and was considering trying it again. Curious if anyone else here has experienced a permanent lid droop?

Appreciate any stories and hope all of you recover soon from your complications!

 

-Kris

Looking For Help!

Hi – I’m brand new to the site, and not even sure what catagory this  will be posted under or who will see it, but I’m searching for help.  I did Botox injections for one year  for migraines, usually around 200 units per three months, and it has made me incredibly ill.  I’m having a hard time finding a doctor that will take this seriously, although due to timing of reaction, my illness was, and still is, obvious hypersensitivity to the Botox.  I live outside of Portland, OR.  Are there any toxicologist, neurologists, or just plain “I believe you” kind of doctors around the west coast anywhere that anyone has found?  I desperately need someone to help me manage my symptoms, and help me thru what is now a waiting game in regards to how long this stuff will take to work its way out of my body (my last round of injections was in October 2014).  Thank you so much for any information.  And special thanks to all on this site.  When I first got sick, you guys saved my husband and I from thinking we were all alone and going crazy!  Thank you.  God bless – De

Feeling helpless…and scared

Hi all

I posted about recently about my bad experience of Botox. I have muscular dystrophy and was given Botox for spasticity in my ankle. The neuro said it was a “small” dose. I went through hell for six weeks…muscle weakness preventing me from walking or working or driving, breathing problems, hungry for air. Eventually got my review appointment with neuro moved forward after complaining a lot about symptoms. The neuro said I have had a generalised effect on my body due to Botox but that it will “definitely” wear off in the three months. After explaining the fear and depression I have due to feeling my life has been ruined he prescribed me with Mestinon which I believe is used for Myastenia Gravis but he said is used “off-label” for Botox adverse effects. I have been taking it since Tuesday and to be fair, it really does help with the muscle weakness but only for about three hours each dose. Now the breathing problems are back in full force though and it’s very scary. I don’t really know what to do and I’m so worried after reading the posts on here that it probably WONT be the three months before I’m better. I am living with muscular dystrophy which was hard enough but I was so active and outgoing and busy. I’m now a recluse at 26 years of age. Getting out of bed is difficult where as before getting me to stay in the house was a task!!! Does anyone have any success stories wherein the Botox actually DID wear off in the three months?

More tests

i have not posted for while –I had to put it all down for a while and try to focus on my family/job and ignore (lol) my issues. I have been reading the posts from time to time and it strikes me that more and more people find this site and have the same ‘aha’ moment the rest of us do.  I saw my first neurologist today.  My primary doc got me in to see him in a couple of weeks–otherwise it would have been Oct. (crazy).  I knew at ‘hello’ it would be a worthless visit.  He doesn’t know what’s wrong with me and wants to rule stuff out. I made the decision to NOT say anything about Botox because I wanted to see what he would do.  He ordered a MRI to look at my spine (which has been hurting quite a bit especially  my neck) and my side around my left rib cage–which is always painful (and according to a former CT scan, there are no issues).  He made me walk down the hall and tested my reflexes…that was the extent of my exam.  Had I waited until Oct for that I would have been very upset.

so my question is–anyone  have a good doc that believes them??  Anyone??  If so, where are they located??  Thank you all.  You give me more strength than you know.

Dysautonomia Anyone?

 

I was reading about Dysautonomia tonight and saw that it can be caused by botulism. I wonder if anyone finds these symptoms familiar…

 

from Wikipedia

The symptoms of dysautonomia are numerous and vary widely from person to person depending on the nerves affected and underlying cause. Symptoms often develop gradually over years. Each patient with dysautonomia is different—some are affected only mildly, while others are often left disabled.[citation needed]

The primary symptoms present in patients with dysautonomia include:[citation needed]

Excessive fatigue
Excessive thirst (polydipsia)
Lightheadedness or dizziness, often associated with orthostatic hypotension (abnormally low blood pressure on standing), sometimes resultin

g in syncope (fainting)
Rapid heart rate or slow heart rate
Blood pressure fluctuations
Difficulty with breathing or swallowing
Shortness of breath with activity or exercise
Distension of the abdomen
Mydriasis (abnormal dilation of the pupils) leading to blurry vision
Urinary incontinence or neurogenic bladder dysfunction
Gastroparesis (delayed gastric emptying) with associated nausea, acid reflux and vomiting
Constipation
Excessive sweating or lack of sweating (anhydrosis)
Heat intolerance brought on with activity and exercise
Sexual problems including erectile dysfunction in men and vaginal dryness and orgasmic difficulties in women
Causes

Dysautonomia may be due to inherited or degenerative neurologic diseases (primary dysautonomia) or it may occur due to injury of the autonomic nervous system from an acquired disorder (secondary dysautonomia). Side effects of drugs can cause abnormalities in the function of the autonomic nervous system, producing an iatrogenic form of dysautonomia.[citation needed]

The most common causes of dysautonomia include:[citation needed]

Heavy metal poisoning
Autoimmune disorders including Sjogren’s syndrome, lupus, sarcoidosis, Anti-NMDA receptor encephalitis
Diabetes mellitus
Multiple sclerosis
Parkinson’s disease (in advanced parkinsonism or early in multiple system atrophy)
HIV and AIDS
Hereditary disorders including familial dysautonomia and Ehlers-Danlos syndrome
Pure autonomic failure
Amyloidosis
Botulism
Chronic alcohol misuse
Some bacterial infections: (Lyme disease, tuberculosis, and Helicobacter pylori)
Spinal cord injury
Surgery or injury involving the nerves
Physical trauma or injury
Closed brain injury caused by asphyxiation, poisoning or encephalitis
Sympathetic nervous system-predominant dysautonomia is common in fibromyalgia, chronic fatigue syndrome, irritable bowel syndrome, and interstitial cystitis, raising the possibility that such dysautonomia could be their common clustering underlying pathogenesis.[1]

Recent injury

Hi Everyone, I am new here. About a month ago I had botox on the forehead. As you know it was an enormous mistake. I am posting to see if anyone has ideas on how to help at this stage. Numbness in extremeties has been my scariest symptom so far. Would the acetylcholine drug help? I was very thankful to find this site and have spent hours here already. Thank you very much and I wish you healing and health.

another positive mouse test

Hi everyone

We have another proof that toxin DOES STAY ACTIVE   in a system much longer and DOES circulate for long in a blood. Klaudia just got her mouse bioassay result positive and she is over 7 months out now. She has done her test in the same lab where I  did – the only place we could get tested.

Im pretty sure every  person have it in the system after injection, injectible drugs goes to the bloodstream, this is logic.  No one knows how long it will be circulating, no one knows when and how it will be metabolized. I just want to know how the hell injectors and doctors can say all this crap if there’s no studies done??? Azzalure ( Dysport) in their leaflet say  ” it is not EXPECTED to be in the bloodstream so pharmacokinetic studies WERE NOT DONE”

Well now they have 2 first proofs , wish there would be more, much much more..

 

where can we get tested for Botulism Type A antibodies?

I found some places…but they are no longer testing…it is now the fourth month…my neuropathy has improved in my tongue…but my hands still terrible…

I tried to find a place that will do this test but they are not doing the test anymore?

there is a black box warning on Botox issued by FDA http://www.drugwatch.com/2012/01/18/fda-black-box-warnings/

doctors are saying this cannot be Botox….yet the FDA says it can …read black box warning…

BOTULINUM TOXIN TYPE A ANTIBODY TEST (ATHENA 113)

Test Code

15589X

CPT Code(s)

84182

 

 

Breathing problems. Muscle weakness

Hi all

I would be so grateful if I could get some advice on how long I will be suffering the side effects of Botox. I had injections into my right calf on the 13th of May 2015 to try and bring my ankle to the ground as I toe walk due to a muscle contracture.  and two weeks later I developed some pretty bad side effects. My breathing is very laboured and I cannot get a deep breath as it feels like my rib muscles aren’t strong enough. The worst side effect is the muscle weakness and fatigue that I’m feeling throughout my whole body. Every limb and muscle is so weak and I now cannot work or drive due to the loss of strength. It’s worth noting that I already have muscular dystrophy so this has made me even worse than I ever was. It has been six weeks since the injection. I have been to A and E once already and spoke to the doctor that administeredn the injection. He said that it is most likely linked to the Botox and that my symptoms should subside after about two months.  Any input or advice would be greatly appreciated.

 

matthew

Hair loss

Hi everyone-

I know many people have experienced hair loss with this poisoning but I’m trying to understand why it’s happening. I had my thyroid and hormones checked a few months ago and nothing was off. I’ve been losing hair from the roots for a couple of months and I knew it was a lot but this morning, I could clearly see where my hair was thinning, and now my hair wants to part there exposing my scalp. Well, I completely lost it and sobbed. My fiancé tried to make me feel better but how can he…I feel sick everyday, my eyes are bloodshot all the time, smaller with lines and dark circles, I’ve lost fat in my face completely changing the shape and structure of it, and now my hair is falling out too. I meditate, I pray, but there are moments where I feel like this is too much. My friends, family, even my fiancé wonder why we haven’t started planning the wedding…I just can’t get myself to do it. I so desperately want to feel and look like myself again before I walk down that aisle. In the meantime I’m trying to help my body recover. I am taking prenatal vitamins and also started with  iodine drops, but I’m wondering what has worked for others? Have you found that the hair loss was connected to something, thyroid perhaps? If so, I will get my blood work done again. Back in December, my blood work did show I had low levels of alpha lipoic acid and B-12, and I never started on any supplements so I’m wondering if that could be causing some of the symptoms. Any suggestions, thoughts, etc would be greatly appreciated. :)

And they all lie that any “good or bad results are only temporary” !!!

 

Permanent extraocular muscle damage following botulinum toxin injection

EDITOR,—The use of botulinum toxin in the management of ocular motility disorders is well established.1 While transient side effects like ptosis2 and diplopia3 4 due to local spread of the toxin do occur, to our knowledge permanent extraocular muscle damage has not been reported. We report a patient with congenital right superior oblique weakness who underwent botulinum toxin injection to the left inferior rectus muscle. This resulted in permanent and profound loss of inferior rectus muscle function, with atrophy of the muscle, confirmed by magnetic resonance imaging scan.

CASE REPORT

 

A 70 year old white man was seen for increasing angle of deviation of a long standing right hyperphoria which had previously been controlled with a small prism correction. His general health was excellent and his only medication was phenelzine 15 mg daily. His visual acuity was 6/5 in each eye. There was a small right hyperphoria (8 prism dioptres) for near and distance with right superior oblique underaction, right inferior oblique overaction, left superior rectus underaction, and left inferior rectus overaction. Symptoms of difficulty maintaining binocular vision while reading were initially alleviated by increasing his prism correction, but 9 months later the deviation had increased, measuring 13 dioptres in the reading position and 4 dioptres for distance. A decision was made to proceed with left inferior rectus botulinum toxin injection. The injection was performed under electromyography control using a 27 gauge monopolar needle. The injection was performed through the lower eyelid, angled upwards, advancing the needle posteriorly, superiorly, and nasally by a surgeon (BWF) experienced in the technique. 2.5 U “Botox” botulinum toxin A were injected. The EMG response from the muscle was low to moderate, but there was no apparent complication associated with the procedure.

At review 1 month later the patient complained of diplopia in all directions of gaze. There was a left hypertropia of 20 dioptres in primary position, which increased on laevodepression, in keeping with left inferior rectus muscle paresis. Over the following 10 months, there was persisting diplopia with no change in Hess chart measurements, and no recovery of left inferior rectus muscle function (Fig 1). Forced duction test did not reveal any significant left superior rectus contracture. Investigations for thyroid dysfunction and myasthenia were negative. Magnetic resonance imaging of the patient’s orbits showed atrophy of the left inferior rectus muscle.

Limited function of left inferior rectus muscle 10 months after botulinum toxin injection.

Coronal scan of orbits 10 months after botulinum toxin injection. Note atrophy of left inferior rectus muscle (arrow).

Inferior transposition of the medial and lateral recti muscles was performed (by JPL). The inferior rectus muscle insertion appeared normal at the time of surgery. No attempt was made to explore the muscle more posteriorly. The procedure produced satisfactory alignment in primary position, with a small overcorrection in laevoversion.

COMMENT

 

Injection of botulinum toxin into a clinically overacting muscle produces a temporary reversible paralysis of that muscle. The result of this paralysis is a change in the force dynamics of the paired antagonistic muscles, which allows the weaker opposing muscle to gain force advantage.

The paralytic action of botulinum toxin is attributed to blockade of neuromuscular transmission by interfering with the release of the neurotransmitter acetylcholine at the motor end plate.5The paralysis following the use of botulinum is generally associated with complete recovery of neuromuscular function over 3–4 months.6 Permanent histological changes have been reported in animal studies of the orbital, singly innervated muscle fibre of adult monkey extraocular muscles. Structural changes in muscle fibres and decrease in the density and lumenal area of vasculature of the muscle fibres was seen.7 Histological evidence of atrophy in the leg muscles has also been reported as a distant effect of botulinum treatment of cervical dystonia.8

Permanent superior rectus muscle weakness in association with botulinum induced ptosis has also been reported, and was presumed to be due either to breakdown of fusion or contracture of the ipsilateral antagonist.9 The possible causes of left inferior rectus muscle atrophy following botulinum toxin injection in our case include intramuscular haematoma or direct damage to the nerve to the muscle within the muscle cone. Inferior rectus muscle paresis has been reported following retrobulbar anaesthesia for cataract surgery,10 and the mechanism may have been similar.

Permanent damage to an extraocular muscle following botulinum toxin injection is a rare complication of the procedure. With increasing numbers of patients undergoing the procedure, both the patient and the surgeon should be aware of this rare complication of botulinum toxin injection.

References

 

Eye Bags

I would like to know if anyone on the site has eye bags since the botox. I look like a 90 year old woman from this. I always had great eyes now I don’t my eyes have horrible bags that I cannot seem to get rid of. Does anyone know what exactly this is from and how to remedy this problem. Is it inflammation or is it fat pads under the eyes. At one point mine went away but now it is horrible and this is 2 yrs. 9 mos out. I would do anything to get rid of these. Has anyone been successful in getting rid of them?

Joint Pain

Hi All — so, June 7 was my six-month injection anniversary (and my b-day. Lousy way to remember a b-day, I’ll tell you). For the past month and a half I have been noticing joint pain, especially in my hands, wrists, and elbows. It’s not there all of the time, but comes and goes (just like other depressing symptoms, like my weirdly twitching eye). I’m pretty sure I remember people on this page mentioning joint pain as a Botox poisoning side effect. Just throwing it out there to see if anything helps, or if it’s just like everything else – drink a lot of water & ginger/turmeric tea & ride it out and wait for the symptoms to go away. If anyone has any specific suggestions for things that helped (or things to avoid!!!) that would be great. Thank you!

Hormones

Has anyone had high estrogen and progesterone levels throughout this. I was on bioidentical hormones when I got the botox and I had to come off because I overdosed on them due to the fact that my liver was not processing them out. I want to know if anyone else has had high progesterone and estrogen levels? It has been 7 months since I stopped taking them and my levels are still high. If anyone has any suggestions on how to get them lowered I really would love to here. It is dangerous to have these high levels. My dr. said they would probably level out in a year. But that scares me I don’t know if they will. This crap doesn’t want to leave my system and things are not working properly. Any feedback would be greatly appreciated. Thanks, Lori

articles about facial paralysis/bell’s palsy

http://www.bellspalsy.ws/symptoms.htm

ok ive been promising for awhile to put up some of this info from this bells palsy site about facial retraining and the social stigma of having stuff wrong with your face… we do -not- have bell’s palsy, but we do have partial paralysis of the face, caused by nerve damage, (and a lot of associated issues) some of which people with bell’s palsy share. (such as crossing of the nerves or abnormal movement patterns during healing) and they definitely share the stigma and depression of having your face be paralyzed, or abnormally functioning and appearing, due to nerve injury. for this reason, i think theres a lot we can learn from information about bell’s palsy, becuase its considerably better understood than botox poisoning and theres a lot more information on how to heal it and help it.. and there arent any big money interests muddying the waters of normal research. unfortunately, there is already a big market being pushed for botox as a -cure- for bells palsy!! so i guess there realy isnt anywhere where the botox mafia hasnt reached in the field of how to mess up people’s faces and bodies and get more money. but ignoring that part, theres still alot of good info on dealing with facial paralysis on these sites.

either way, my favorite thing though is that people on bell’s palsy sites dont try to sugar coat how distressing it can be to have your face deformed or paralyzed. they dont try to act like ‘at least’ your not ‘something else’ or whatever- or try to convince you its not that big a deal or its ‘just your face’. they go right to the point. having your face messed up can be devastating for a million reasons, and its totally not necessary for ANYONE to understand this, but you, the person who are dealign with it.. so it really doest matter what anyone else thinks or says. if your face is messed up and it bothers you, thats true for you and its not up to anyone anywhere anytime, to try to minimize that for you.

i know there are peopel here suffering a lot from being suddenly forced to look like a freak on top of everything else we are dealing with, and im putting this up as validation for what you are going through. anyone who -isnt- goign through it, has -nothing- to say about it. bottom line. -nothing-. here as some quote from the site:

“Psychologically, facial paralysis can be devastating, particularly in cases that extend for a long period, or where residuals are significant. Friends, family and doctors often have no true concept of how deeply the patient’s sense of self and self-esteem is affected. You will also find that they have little or no understanding of your physical discomfort, difficulty and frustration as you struggle to do seemingly simple things that they take for granted.

“There are many physical symptoms associated with facial paralysis, but the effects will differ between individuals. They can vary in accordance with the degree of nerve damage, and the location of the damage.

GENERAL
EYE RELATED

Muscle weakness or paralysis
Forehead wrinkles disappear
Overall droopy appearance
Impossible or difficult to blink
Nose runs
Nose is constantly stuffed
Difficulty speaking
Difficulty eating and drinking
Sensitivity to sound (hyperacusis)
Excess or reduced salivation
Facial swelling
Diminished or distorted taste
Pain in or near the ear
Drooling

Eye closure difficult or impossible
Lack of tears
Excessive tearing
Brow droop
Tears fail to coat cornea
Lower eyelid droop
Sensitivity to light

RESIDUAL EFFECTS
Eye appears smaller
Blink remains incomplete or infrequent
Tearing abnormalities
Asymmetrical smile
Mouth pulls up and outward
Sinus problems
Nose runs during physical exertion
Post paralytic hemifacial spasm
Hypertonic muscles
Co-contracting muscles
Synkinesis (oral/ocular well known, but can affect any muscle group)
Sweating while eating or during physical exertion
Muscles become more flaccid when tired, or during minor illness
Muscles stiffen when exposed to cold, when tired, or during illness

“Recovery is not consistent among patients. For some people the mouth may move before the ability to blink returns; in others it will be eyelids first and mouth last. Twitching may precede movement, but it doesn’t always. Pain in areas starting to “wake up” may occur, or may not. The sense of taste can be odd as the sensation returns, or the sense of taste may return without any awareness of the change. Recovery can be gradual, rapid, or hit occassional plateaus. Et cetera.

RESIDUAL EFFECTS
“Residuals may be due to one, or a combination of several factors. Initial trauma to the nerve can be minor and temporary, or significant and long lasting. When the damage is minor, recovery is likely to be essentially complete, and rapid. With more extensive damage, other factors begin to effect recovery.

“In longer recoveries, other cranial nerves may try to take over for the 7th nerve, growing into passageways formerly occupied by the 7th nerve. Also, the 7th nerve can regenerate incorrectly, taking some different paths than it had followed before Bells palsy. The result is “crossed wiring” and synkinesis, which is further described in the next section.

After paralysis facial muscles have a tendancy to become hypertonic. This means they tend to be overactive, contracting when they should be at rest. Typical signs are a squinty eye, the mouth pulling up, a sore or swollen cheek, and deepened creases. Unlike skeletal muscles, facial muscles lack spindles. Muscle spindles sense when a muscle is in a contracted state, and nerves can send the appropriate signal to the muscle telling it to relax. Without these spindles, there is no awareness of the contraction, and the muscles remain in a state of tension. A muscle that can not fully relax also can not fully contract, so the range of motion becomes limited.

“Learned misuse and disuse of the muscles also can effect both appearance and mobility. While the muscles are paralysed, it’s natural to try to eat, drink and speak, etc., as well as you can. New habits may be learned while you’re compensating for the nonworking muscles. You may inadvertantly call on inappropriate muscles to join forces and work together to accomplish movements that aren’t happening on their own (learned misuse). Or you may become accustomed to compensating without using the lazy muscles (learned disuse). The effects of both may remain after nerve function returns. Both can also effect the “good” side, which may have learned unnatural patterns while its muscles were assisting the nonworking muscles.

“Physical therapy can minimize asymmetrical appearance and improve mobility, even when therapy is started years after the initial paralysis.”

theres a couple little points to take out of here i think: one is the idea that muscles recovering from paralysis often respond with overcontraction or hyperactivity…. some of this is resposible, i think, for the weird way our faces start to move (or not move) -after- the poison wears off… lots of us have muscles that seem permanently contracted, spasming, or abnormally enlarged.. long after the botox effect has supposedly worn off… or facial problems that got worse -after- it wore off. (i know mine did ) even if its not externally noticeable to you, the fact that some of your muscles are overcontracted while others are still weak, is probably a big factor throwing off the balance and normal look/function of your face as a whole. (my personal guess) and this is normal when recovering from paralysis.

the other thing is that facial muscles are different from body muscles in some key ways. one is, they dont have ‘spindles’ which other muscles have which tell them to relax when they are contracted. for this reason facial muscles that are overcontracted wont just heal on their own. they need to be exercised and loosened through massage or biofeedback or meditation or any other technique that works. but they -dont- have the mechanism to relax normally on their own when they are overcontracted, like other muscles in the body. this limits the range of motion of our injured muscles, whether we notice it or not, and affects the way our face functions.

the other point at least on this page of the article is that these thigns can still be improved even years after the paralysis occurs, even when it has healed abnormally and all kinds of other secondary problemse have happened. they still expect to see good improvement with therapy aimed at retraining the nerves and muscles. we – dont- have bell’s palsy but i definitely think we can apply some of their training techiques to what we have and that its possible to see improvements even long after the original injury. there are other points too not listed here, such as it takes much, much longer for facial muscles to atrophy than other muscles… and its easier for them to recover from atrophy. thats a good thing for us.

so i hope this article helps a bit, to validate those who are suffering, and also to maybe give a bit of hope, there is no cure for botox poisoning or botox damage to the muscles, but thast becuase noone is studying it. tons of people study bell’s palsy and they are confident of making improvements in facial function and appearance even years after the original injury.

its just flat out nerve damage.. which has caused paralysis, and a lot of secondary problems because of this paralysis.. this is how i think it is similar to bell’s palsy. and if other people with nerve paralysis in the face can see improvement and results with a little focused effort i think we can too. and dont let anyone tell you its ‘just your face’ yeah on some levels the face is just a superficial thing, on other levels, its who we are. its the way we interact with the world and the people we love and care about. its what people instantly judge others by. thats no small thing to lose, for something as utterly stupid as getting poisoned by what was promised to be a totally reversible extremely minor -totally- unecessary procedure.