Partial Myectomy and Ptosis Repair for Blepharospasm with Apraxia of Lid Opening

I am in Boise Idaho. BEB was self diagnosed as none of the opth I saw locally was considering it. Dx Nov 08, I think Sx began 5 yrs ago, worse since 07. Have had a very protracted course with no end in sight. Initial Surg oct 09,2 revisions on each eye since then.one eye seems to have "excess" of lower half of upper lid,lids don't align,blurred vision, I think unstable tear film, The other just had a revision 10 days ago and still looks "hung up" laterally.Also supposed to have had SOOF,but one side already showing decreased tone lower lid/cheek area.No evidence of SOOF per another opth locally. Any suggestions?. Need to be able to work, study to re-certify this yr.....

sorry to hear. I have had a year on not being able to keep eyes open, botox treats the spasms but apraxia does not all them to stay open. have doctor that is specialist with beb, ocular plastic surgeon. am considering partial myectemy and ptosis repair. May i ask who did your surgery? I would be glad to share the name of my doctor if you are interested. did you have a complete myectamy or ptosis repair. prior to surgery what were your symptoms and how did botox work? kim

If ur spec is in UT, we are prob taking about the same. My surg is supposed to be"the authority" on BEB. rec surg after 1 botox Rx. My apraxia was not that much of a problem after botox.I had partial myec, ptosis rep all at the same time. Botox worked very well for spasms.apparently had all 3 BEB,ptosis and ALO. My eyes want to go back to the same lid position because that is the only position when i have a stable tear film and all ghost images go away. This is a decision I will regret for the rest of my life. My vision now is like looking thru eyes full of tears all the time,

my guy is in st louis but spent 2 years with the man who created the surgery and currently practices in utah. at one time i had considered traveling if he was the best. my guy does not speak much about him. after one teat and minimal success with botox he has sugested the ptosis repair and partial myectamy. What is AOL? What else can be done to correct? could you explain a bit about your eyes going back to original position? i am unfamiliar as to what you are experiencing. thanks for your info. it is very helpful to me as i consider this procedure. i am terribly sorry for your current condition and wish you well. What kind of doc are you? kim

I am an internist. AlO is apraxia of lid opening.my eyes used to suddenly close and i could not open them until they wanted to, but i could open them with my hand. Apparently ALO only responds to Myectomy. in my case that was the ONLY reason to do the surgery. I was struggling for 2-3 yrs , gradually getting worse and had gone down to very part time work.With the economic crash 2 yrs ago and 2 kids in college,I needed to go back to FT work. Found about the doc in UT, great response to botox, felt good to look for full time practice.Got a great offer. Thought of getting surg before starting full time . i was told 2wks off best 6wks, i resigned from my part-time.6 wks before, got surg, was unable to join, got 1 mon extension. still could not join, lost the offer along with what I was doing. At a time when I needed more work, i have lost everything, still can't look for work. Tried to get 1 lid repaired locally, now that is very loose and does not sit on the eyeball. What I meant was that if I pull my lids to how they used to be I can see, all ghosts go away.I wish I knew what else can be done. I need to work or go bankrupt. I can't imagine someone anyone can do what was done to me and get away with it

jdasi, so sorry to hear of all the persons that are going thru BEBRF
I pray that heal us of this horrible affliction I started back in sept/oct 2007 squinting had my eyes ck'd by several eye dr's and one specialist for aprox 4 hours and same as others a mild dry eye , vision good for my age 53 saw many dr's at this piont about 2 mos, developed heaviness and cramps, as if i had water inside the head moving, very dizzy,nausea,unbalance and ringing in my ears, i would try to describe it as if having a really BAD head cold and had just gotten off a really wild rollercoaster ride, i did't know how to knock some sense in these trained drs it's been three yrs, after seeing a number of neur's they would refer me to phych. and one even said "we can refer u to a neursurg. to open your eye perm. and use alot of eye drops" the worst was when they would tell me there is nothing they can do. I would walk out very depressed, i just came back from visiting dr in utah myectomy was advised had botox to see if i can have some relief, just 3 days ago, finally someone actually knew my symptoms felt very good about dr. i don't have the money came back broke no insurance. my life has turned upsidedown, constent pressure head, neck, shoulders, feel like i'am going crazy, left all drugs lorazepam, etc. tried about 20-30 dif,ones none help the only one i get relief after 5-7 days is ambien -cr i get to finally sleep and when i get up to use rroom i can open my eyes completely and relieved of any pressure pain! Thank God!!! but in the morning i start getting all the syptoms. back
i tried taking ambien during the day it seemed to help a little but dr said i was over-dosing and it should only be used in the dark. i spend my last 3 yrs confined in a dark room a do alot of praying which has helped my from taking my life, going crazy, nobody knew what was wrong until this dr seemed to know what i'am going thru! I was very active in our church most of my life, helping the sick and needy, i miss it all so much, i pray that God will deliver me from this affliction all i want to do is serve Him with all my heart. sp please if anybody has had myectomy surgery please reply thanks and God bless!

my name is Theresa and I live outside the New Orleans area and there is an opthamalogist who specializes in eye plastic surgery and I have had one consultation with him for surgery for bleapharospsms, and I have talked to a lot of people who have had him do there surgery, from just cosmetic purposes to people who had eye cancer and had reconstruction after radiation and a friend of mine her daughter was born with an issue with one of her eyes, and this dr. developed an artificial eye for her that moves like her "good" eye, she still cannot see out of it but you would never know it to look at her and people who have blepharospasms and my daughter is a R.N. in the New Orleans area and she has had a lot of good feedback from people and doctors she encounters. and they all say he is "the man" to go to in our general area and I have heard of people coming from other states to see him. I saw a neurologist for 5 years with botox injections, (botox, disport) every 3 months for 5 years. and when I was first diagnosed in 2010 (after seeing many other dr's who could not diagnose me) the botox worked for a while then it got to where it was not as affective as it once was. so I quit for awhile, I have not had botox injections since September 2014. I presently am about to consult a new neurologist for restarting my botox, but I also have other neurological issues that I need a neurologist for. but I am trying to decide whether or not to have the eye surgery. I am like you sp1354 I have a lot of the issues you described in your response to jdasi and also get very depressed, cuz unless you are living with this disorder people have no idea what you are going through. I also have meige and cervical torticollis and was getting botox in my face and neck and shoulders as well as my eyes. I wish everyone who reads this Blessings from God on there Journey because it is a journey albeit not a pleasant one. But with faith and prayers I believe we can get through it. I just would like to read some positive results on the surgery with people who have blepharospasms. Good Luck to all and God Bless. tpjla.

As time is going on, I am beginning to think it wasn't the doctor but just my luck.I KNOW THE DOC IS PROB BEST IN THE WORLD.My professional life has just been that when it seemed my career would take off, luck intervened. I have trained more in my life than I ever got to use.I wish somebody knew my story. trained as a pediatrician in Europe,gave up to raise kids,came to US,needed to train again per req, head-on coll 1 day passed out on way back after a hard call weekend while in training,went back to finish after 2 months, Aced the Board exams ,5 yrs later blepharospasm began.. rest is history as they say.. When i first wrote here, I was mad,still am to an extent for the rec for surgery when my stakes were so high.BUT IT WOULD BE UNFAIR TO BLAME THE SURGEON ALONE.I was so happy after the botox results, conf to go back to work, delighted at the job offer..that I didn't think anything could go wrong or asked more ques.Also think since a lot of communication was on email via secretary,she gave his routine ans without really understanding my job, its req etc..

I also wanted to add for u Vickisue, that the botox was BEFORE surgery for spasms. Since the initial surgeery, its only been more surg and massage. Talking abouta stranger looking at you in the mirror, I looked like someone from a diff planet at 5 wks after the 1st surg. At present all I care about is to be able to see clearly so i can drive,find some work to help finances a little.In the desperation I probably pushed for correction too early without giving more time to heal. Well, my eyes were so dry and uncovered that the cornea was getting abraisons, even patching hurt as the eyelashes would rub the eyeball.I have been patching my eyes every night for 3 months now just to try to sleep even if interrupted

was wondering how you are doing? kim

Thks for caring! Did U ever get your surg? I dec to not let this destroy me, the person.Been to hell and back before, prayed for a chance again.With God's grace, found a 3 mo job in one of the rural areas, with patching at night and drops after every patient,sqeezing out the air from the lids in-between, I am getting more used to working with these eyes. Both eyes have very diff shape,I wear glasses all the time. The pts are elderly, don't care about what I look like and love the care they get,give a lot of blessing.My life is getting rebuilt one blessing at a time. The price is-living away from my family and making up at night for all the extra time I take to do my notes due to eyes.Instead of 8-5 or 6, my working days are 8-10 or 11. 4-5 hrs sleep x 5 days, sleep half day sat and sun , time is going fast. Can't do any procedures or trust my readings of xrays scans etc, live walking distance from the place of work ....

I had surgery on May 7 with dr. holds in st louis. so far so good. my eyes are open and sight is good. i have some swelling and still quite numb in the forehead and eye lid. Dr holds spoke of correcting surgeries for those that did not fair well. If interested i would be glad to share more. Sounds as if you are adjusting well. Having this surgery was the hardest decision I have ever made.kim

Kim, I would like to speak with Dr Holds if he can make my eyes look even again. I have developed a problem in both lower lids now too because of changing angle of eyes. Both lids turn inwards everynow and then especially when I rub(entropion). This locum is coming to an end, can't really afford much but paid some of the debt. I wonder if he will give a free phone consult as a professional curtsey, I am sure the insurance will pay for functional lid repair and if he will charge a reasonable fee for the rest..I can try to come one time. I live in Idaho. Can you talk to him about me please and tell me what he says? I will really appreciate any help.

I am seeing him on Friday 6/25 and will pass him your info. I will contact you back Kim.

Thanks Kim! Much Appreciated. God bless you.

wondering how you are doing kim s

I am carrying on. Decided to take a break from surgeries. Learning to live with what I have. Both my lower lids have started to turn inwards and i have been told they will need surgical correction. every now and then the lashes rub too much and they get very irritated. Vision wise i can get by but all the precision is gone, I see double unless I scrunch up my eyes like the spasm s did. the floppy upper Lt lid is a little better but still loose, so still have to squeeze out air and tears from it periodically.

I never heard back from you. kept wondering if you ever talked to your surgeon about me.I am so far away, will need a phone consult or something first before i can take a chance again.

How are you doing? Hope all is well with you.
Take care, Happy Holidays!!

Jdasi

I just wanted to add . i think it would have made all the difference if my surgeon had done a brow lift instead of Ptosis repair. Due to the repair, my lids keep pulling the brow down because the upper lids aren't wide enough any more. my eyebrows sit almost underneath the brow ridge instead of a little above. Just added this in case you do talk to your surgeon again,

Who was your surgeon? I am contemplating a blepharoplasty and I live in Utah. Please message me the name if you don't want to write it here.

My doc is occular plastic surgeon. John holds. MD St louis mo. The surgeries I had were for blepfrospasm with apraxia. Included ptosis repair. While a myectemy is not cosmetic surgery I believe the results are better than expected. Most important I can see again. Best of luck Kim

Thanks Arlo777. I think I will try to get an appointment with Dr. Schorr. I actually made one for a doctor at Keck but just realized she is only 2 years out of residency! I know surgery is all about experience. I think I will try and see if Dr. Schorr can see me then instead. Thanks a Lot.

I am curious were you able to drive after the procedure? and do you have any regrets doing the procedure? I was told by a neurologist that I would love it for 6 months then be disappointed? any comments regarding that statement? I have blepharospasms with meige and have a competent eye plastic surgeon to do the procedure but am hesitant. tpjla