Re: Blephro surgery
Hi Patti,
I am also on SSD. I had my upper limited myectomy surgery a year ago. Some people have enough improvement from the surgery that they would be able to go back to work. I did not. When I initially was approved for SSD I was told that I would be re-evaluated in three years. That evaluation time will fall sometime this summer.
You probably will have a re-evaluation at some point to see if you should remain on SSD. Some people have mentioned that their re-evals would be in 7 years.
It is my understanding, though, that at any point that your condition improves to the point where you can work that the SSD will be stopped. So, it will just all depend on the amount of improvement that you get from the surgery. Results vary. Look through your SS paperwork and you might also call the SS office and ask when you will be evaluated again. I've made certain that the doctors that I see now are well aware of my limitations. I'm sure that I will receive a notification and questionaire regarding this and at that time I plan on writing a letter to my doctors stating the things that I still have difficulty with so that they will have something specific to go by.But the short answer is yes your SSD could be taken away from you if you improve enough that you could go back to work. You will not know the full results of your surgery though for 6 months to a year. Shirley in Arkansas
Re: Blephro surgery
They said I would be re evaluated in 5 years. Shirley, How are you eyes doing now after surgery? Would you e-mail me? pati@artnet.net I had your e-mail address at one time. I'll look for it agan.
Re: Blephro surgery
Patti, my email address has changed so you won't have the new one.My eyes have improved some (enough that I would have done the surgery again) but not to the extent of improvement that some have had. My apraxia problem was not helped as much as I would have liked and continues to be my biggest problem. The only other option for improvement in this area is a frontalis sling and I'm not comfortable with having that procedure done at this time. I'll email you. Shirley in Arkansas
Re: Blephro surgery
Thank you Shirley and Alan.What is a "frontal sling?" I receive the news letter but can't read it much because of the small print and the layout. I really don't expect much improvement. If I only can get some relief with the spasms.
Re: Frontalis Sling
Patti,
I copied a section out of the article on Apraxia by Dr.Anderson from the BEBRF Main Page that explains what a frontalis sling is.
It is below:Most patients with apraxia of lid opening can be markedly improved with a combination of limited myectomy, ptosis repair, and botulinum toxin. Unfortunately, drugs have provided little or no improvement. However, despite these treatments, there remains a small group of patients who are unable to function adequately. In this group, a frontalis sling or frontalis suspension Is performed as a second operation. The frontalis muscle is the forehead muscle that raises the eyebrows. In a frontalis sling, the frontalis is used to raise the eyelids by running a material from this muscle into the eyelids. We have recently found that a thick Gore-Tex suture is the best material available for frontalis suspensions in apraxia of lid opening. This suture material is readily obtainable and allows vascular ingrowth as opposed to other synthetic materials. Fascia lata, or tendons from elsewhere in the body, can also be used for frontalis suspension, but they require an additional surgical site for obtaining this material and they are not as easily adjustable if the patient's eyes are open too much or do not close adequately after the surgery.
Re: Frontalis Sling
SOUNDS LIKE A DRINK. Ann D.
Re: Frontalis Sling
I thought that was "Singapore"???Sally in North Idaho who only drinks water, and it's not in a sling.
(But I read about lots of different types of people and ways of life and I find out lots of useful stuff like that!)
Re: Frontalis Sling
You are absolutely correct Sally :)In days of youth and yore I consumed two of these wonderfull concoctions because they were SO yummy. .... and then attempted to get up and dance. For some odd reason the floor and walls tilted and my legs wouldn't work. Singapore Sling One half-measure Gin
One quarter Cherry Brandy
One quarter mixed fruit juices ( Orange, Lime or Lemon, Pineapple )
A few drops of Cointreau & Benedictine
A dash of Angostura Bitters
Top with a cherry and a slice of pineapple Judy (who doesn't do that anymore :)
Re: Frontalis Sling
Thanks for the recipe, Judy. How come you didn't include that in the Eye-Opening cookbook? I wonder how it would go with Evelyn's tofu lasagna?Sally in North Idaho who hasn't had a wild life yet, but might begin it one day soon!
Re: Party?
I think that we should include Judy's Singapore Slings and Evelyn's Tofu lasagna in our next party. Sally, just let us know when you feel that you would like to start your wild partying days. Maybe when you get back from Scotland. :-)Shirley in Arkansas who used to love Singapore Slings in her 20's(over 21 of course ]:-) I would have "one" (really) and dance the night away.
Re: Blephro surgery
Patti, chances are that SS will not contact you for the five years unless you actually do go out and make some income that gets reported through payroll deductions. Even though I have a seven year category, I get contacted every year by SSI asking if I am still disabled since they noticed that I had sizeable ordinary income that I reported on my W2. Each year, I have a number of shares of my Companies stocks that I acquired while working that expired. The difference between the price that they were optioned to me and the price that I had to exercize (buy) them is unfortunately, treated as ordinary income and subject to the same taxation as if I was working. There is no differentation. Anyway, it is no big deal as I do not have to take exams or get Dr's letters, I just tell them where the income came from and that is that. I also at the same time remind them to reformulate my SSI check amount to reflect the wages earned which believe it or not they do. I am sure they would whether I mentioned it or not. Anyway, Shirley is also right in that nothing is ever cast in stone and you just have to be careful in what you do and don't do. ....Alan
Re: SSD Re-evaluations
Alan do you or anybody else know what this actually consists of? When you do have the evaluation for continuing SSD benefits, I wonder what they actually ask or what process one goes through.
Has anyone had a re-evaluation for continuing benefits? I'm don't think that anyone has ever commented on having this done.
I would assume that more forms would have to be filled out and medical records from your doctors turned in again.Shirley in Arkansas-inquiring minds want to know
Re: SSD Re-evaluations
Shirley, you know, I really do not know the answer. This is one of those that normally I would pick up the phone in a second and ask but I would be afraid that they would then somehow signal me out for review early. It is nothing I am afraid of because of my condition, it it just the pain in the neck it would be if it were the same process. I would have to believe that it would only require the Doctors sign-off since the precedent has already been set with the individual that the disease itself is recognized by them and that the person does in fact have it. It would just be a statement that says the patient is not able to work. Just my guess.Oh what the heck, I think I will call them up and ask anyway. I will just say Shirley ......said so and her EMail is.......... so go pick on her. Boy would I get even up with you real quick.
Re: SSD Re-evaluations
Alan, you are just too helpful. :-) You must know by now that getting even with me will not work.I don't seriously think that the re-eval will be a problem either, just a lot of extra paperwork like you said which can be a pain. Shirley
SSD Re-evaluations
Ok, inquiring minds ...My SSDI notice of award was effective, with first payment on Sept. 1998. My renewal period was listed at 3 yrs. On October 2001, I received a 'Disability Update Report' consisting of a 2 page simple form requesting information on my current physical status. I also attached an updated letter from my doctor which had just been done for my LTD from Cigna (through my previous employment) which stated that my condition had retrogressed and that I was 75 - 100% disabled by his estimation. Sending the above information in to SSDI, I received no further questioning. The primary intent of the update seems to be: 1. Have you been able to return to work. 2. What condition is your condition in? An adequately definitive letter from your doctor as to the current status of your disorder supplies the qualifying answers. (Make sure you know what is on that report before it is sent in. Have the doctor return it to you so that you are aware of the content.) Don't EVER throw anything away! Judy
Re: SSD Re-evaluations
Thanks Judy. About what I figured but it's nice to hear about it from someone that has gone through the process. This is also something that might be good to be in the BEBRF's packact on SSD information.
I should be hearing from SS this summer as that will be my 3 year point.Thanks again,
Shirley
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