I'M CONFUSED???????


Posted by clara allen , Feb 07,2001,08:48   Archive
OK, HERE IS THE SCOOP.....WENT BACK TO SURGEON YESTERDAY. THE BOTOX INJECTIONS I HAD ONE WEEK POST-OP WORE OFF WITHIN TWO WEEKS AFTER THE BOTOX STARTED WORKING. EYES STILL CLOSED MOST OF THE TIME, LOTS OF SPASM IN LOWER EYELIDS AND FACE. HE SAID HE COULD NOT GIVE ME BOTOX AGAIN UNTIL THE 27TH OF FEBRUARY. THEN TO COME BACK THREE WEEKS AFTER INJECTIONS TO BE EVALUATED FOR APRAXIA OF EYELID AND TO SEE IF BOTOX IS GOING TO CONTROL SPASMS FOR A SUBSTANIAL AMOUNT OF TIME. HE SAID THAT AT THIS POINT IN TIME, I HAVE 10% MUSCLE STRENGTH IN UPPER EYELIDS AND 100% STRENGTH IN LOWER EYELIDS.

REASON FOR CONFUSION-----I HAD A FULL RADICAL MYECTOMY, HOW CAN I HAVE 100% MUSCLE STRENGTH IN LOWER EYELIDS???? IF BOTOX DOES NOT WORK AND HE CAN NOT DIAGNOS APRAXIA, WHY CAN'T HE JUST PUT THE SUSPENSIONS IN ANYWAY TO HELP OPEN MY UPPER EYELIDS? SAID HE MAY HAVE TO REMOVE MORE MUSCLE FROM LOWER EYELIDS, THOUGHT THAT WAS WHAT A FULL RADICAL MYECTOMY INCLUDED......I TOLD HIM WHATEVER HE WAS GOING TO DO HE HAD BETTER DO IT PDQ BECAUSE MY DISABILITY INSURANCE RUNS OUT THE END OF MARCH AND I CAN'T AFFORD COBRA. HE DID NOT SEEM TOO CONCERNED ABOUT THAT AND WROTE ME OFF FROM WORK FOR ANOTHER THREE MONTHS. HAVE BEEN OFF SINCE OCT. 1, 00.

OH, WELL, WHO KNOWS!!!! I HAVE APPLIED FOR SSD AND AM WAITING FOR RESPONSE ON THAT. MEANWHILE I HAVE ENROLLED IN PROGRAM THAT TRAINS BLIND PEOPLE TO WORK ON COMPUTER USING SCREEN READING PROGRAM. I CAN TYPE WITHOUT LOOKING AT KEYS, JUST CANT READ WHAT I AM TYPING OR WHAT NEEDS TO BE TYPED. THE PROGRAM WORKS BY USING VOICE RECORDING OF INFO TO BE ENTERED AND SCREEN READER TELLS YOU WHAT FIELD YOU ARE IN AND WHAT IS ENTERED.

AS MY FAVORITE TV COMMERCIAL SAYS "THERE ARE NO PROBLEMS.....JUST SOLUTIONS!!!!!

CLARA IN OHIO--DAZED AND CONFUSED




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Re: I'M CONFUSED???????

Re : I'M CONFUSED??????? --- clara allen
Posted by Virginia , Feb 07,2001,09:17 Top of Thread Archive
Clara,
Sorry you are still having so much trouble. Doctors never really remove all of the muscles. It is a judgement call for them to decide how much to take out. He may (must) have mis-judged. I'm as confused as you about the 100% - that seems strange.

Have you discussed Myobloc with him? A different strain of Botulinum toxin might work to get your muscles calmed down enough to diagnose apraxia. He could just go ahead and put in a sling. Some doctors do it. If you are not satisfied with what your doctor is doing and telling you, you have every right to see another doctor. I know the insurance running out doesn't help, but maybe the SSD will be approved and you will have other options when that happens.

Hoping for better results in the future,
Virginia in AL




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Re: I'M CONFUSED???????

Re : I'M CONFUSED??????? --- clara allen
Posted by Shirley-Arkansas-USA , Feb 07,2001,13:41 Top of Thread Archive
Hi Clara, I really feel for you. It sounds like you had a limited myectomy which would just involve the upper lids (or upper myectomy). It doesn't sound like he addressed the apraxia problem at all which would have consisted of tightening or shortening the levator muscle and also removing any excess skin on your upper lids. From what you are saying, it doesn't sound like he removed any or much muscle from your lower lids. If he did not, then you could be having enough squeezing from just your lower lids to cause your eyes to close completely. Mine will certainly do that.
When you got the botox, how much did he give you and where was it given? Did he inject the lower lids? I would think that he would have done that if he didn't do a lower myectomy.
When you had spoken of "radical Myectomy" before, the term confused me as I had never heard it used before. (which doesn't mean there isn't such a thing). Usually it is referred to as an upper and lower myectomy, with the two being done at different times. Usually the upper myectomy is done first and then the patient evaluated for the amount of squeezing in the lower lids and a trial done to see if botox can manage the lower lids. If not, then a lower myectomy can be done. But depending on the muscles left and the amount of squeezing that remains, botox may have to be continued indefinitely.
For apraxia, the surgery usually involves what I stated above regarding the levator muscle and removal of excess baggy upper lid tissue, The frontalis sling is another option.

I think that you need to check with your doctor to see EXACTLY what he did and did not do.

Shirley in AR. Just going by what I have read and heard at the conference. Copy and take my post in with you and ask him questions.

--modified by Shirley-Arkansas-USA at Wed, Feb 07, 2001, 13:43:30




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Re: I'M CONFUSED???????

Re : Re: I'M CONFUSED??????? --- Shirley-Arkansas-USA
Posted by clara allen , Feb 07,2001,15:58 Top of Thread Archive
THE SURGEON SAID AFTER SURGERY THAT HE REMOVED THE MUSCLES FROM MY UPPER EYELIDS, DID AN EYEBROW LIFT, REMOVED MUSCLE FROM BETWEEN EYEBROWS AND BETWEEN EYES AND AS MUCH MUSCLE AS HE COULD FROM LOWER EYELIDS, (HE STATED THAT HE HAD TO LEAVE SOME FOR BLOOD FLOW). MY SCARS ARE ABOVE MY EYEBROWS. MY BROWS HAVE BEEN RAISED, BECAUSE BEFORE THEY WERE WAY DOWN OUT OF PLACE AND THE SKIN FOLDED OVER MY EYELIDS. NOW NICE AND HIGH, EYELIDS DO NOT HAVE ANY BAGGAGE, ACTUALLY LOOK PRETTY GOOD FROM THOSE RARE OCCASIONS WHEN I CAN GET THEM TO STAY OPEN LONG ENOUGH TO SEE WHAT THEY LOOK LIKE. SCARS ARE VERY FAINT FOLLOWING THE OUTLINE OF MY EYEBROW. ALMOST NO SWELLING LEFT, JUST ANNOYING ITCHING.
DON'T WANT TO SWITCH DOCTORS, I THINK HE IS BEST ONE IN AREA. MY CASE WAS JUST SO SEVERE THAT I THINK MAYBE HE HAS DONE ABOUT ALL HE COULD DO AS FAR AS REMOVING MUSCLE. AM THINKING HE PLANS ON DOING FRONTALIS SLING, BUT HAS TO TRY AND CONTROL SPASMS WITH BOTOX FIRST. I WILL ASK ABOUT TRYING BOTOX B, HE IS ONE OF THE DOCTOR APPROVED TO TRY IT ON PATIENTS ONLY WITH MODERATE SYMPTOMS. MAYBE THAT WILL WORK BETTER....



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Re: I'M CONFUSED???????

Re : I'M CONFUSED??????? --- clara allen
Posted by Cynthia , Feb 07,2001,20:59 Top of Thread Archive
Clara, you have a right to see all of your records both at the hospital and at the doctor's. You will probably have to request them in writing. If you request to view them at their convehience they might allow that; otherwise they will charge you for making copies. That charge could be somewhere around $25, but you may find the answers you are looking for, though your doctor should be the one to give them to you.

I commend you for your courages and perseverance through all of this. You have a lot of legitimate questions that need to be answered and I certainly hope that you get them. Wish we could be of more help.

Prayers,
Cynthia in IL where it is raining.




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Re: I'M CONFUSED???????

Re : I'M CONFUSED??????? --- clara allen
Posted by Sharon Carey , Feb 09,2001,09:46 Top of Thread Archive
Dear Clara
Sounds to me like your doctor did the same surgery on you that I had at the UW, in Madison, Wi. He called it a "Radical" and removed most of the muscle from around my eyebrows and between my eyes. I have scars just at my eyebrows, and they do not show much, because I wear bangs. They are fading all the time. I would stick with your doctor, at least for the time being, and remember that none of them have this goofy condition figured out, its always sort of hit and miss. Just ask a lot of questions.
Regards from Sharon Carey on vacation in Ga. and loving the 78 degree weather.



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