Thanks for the welcome


Posted by Curtis Dylan (curtis dylan,Curtis Dylan), Jul 16,2001,20:39   Archive
Thank you all who responded to my posted reply below. I love your
humor on this board and by no means was complaining. Everyone needs
to laugh. I got a kick out of the silly responses and how far you
all took the thread. Keep it up.

So after reading the replies I have gathered that Myectomy is not a
cure. So If I do not respond to Botox and I get the surgery what
other type of treatment (post surgery) will I have? Can the surgery
be repeated again if the surgeon is to conservative? If my Dystonia
is more involved than just Blephs does this matter? Why are doctors
writing that the reoccurrence rate is <90% in those with Myectomy?
Dr. Frueh says " we now reserve surgery for patients who are refractory
to the toxin or cannot return to periodic injections "? I realize that
the muscles don't regenerate after myectomy but nerves do and blephs
can return. I am confused I guess.

When they did your upper myectomy did they make a brow incision?
I guess I could use a eye tuck, joking. I hope that if I have
neuromyectomy that my facial nerves branches that traverse the muscle
will be removed and help me. My main problems is at times my Blephs
are substainded for seconds. It seems as though any other motor
function I am doing my blephs are good and unnoticeable. When I sit
or try to read, relax or do anything that just involves my eyes and
not other body parts my blephs are worse. Stress is a killer.
I can't complain about the weather here. 85 day, 70 night.
With my blephs there are just certain times that it is bad. Driving
and walking are no problem. When I am forced to concentrate I can.
If someone sits in front of me and stares at me my eyes gp shut
and wont reopen. They walk away and I can reopen. I think given
that fact my Dystonia is wide spread that I allow thoughts of what
others think of me get to me and elevates my nerves and stress
goes through the roof. Social embarrassment is hard to deal with
as you all know, I'm sure.

Thanks for the BB and your gracious welcome. Hope I can help
others.

Curtis




Recommend Current pageAuthor Profile
Replies to this message


Re: Thanks for the welcome

Re : Thanks for the welcome --- Curtis Dylan
Posted by Shirley-Arkansas-USA , Jul 17,2001,16:49 Top of Thread Archive
Hi Curtis, I'll try and answer some of your questions.

>>So If I do not respond to Botox and I get the surgery what
>>other type of treatment (post surgery) will I have?

Actually the same as before. Possibly botox will help after surgery-can't say for sure. Medications are available to help with some of the symptoms. Some people gain relief with stress management techniques, chiropractic care, acupuncture, etc. Patient Stories volume II can be obtained from the BEBRF and relates stories of people with BEB and treatments that they have tried.

>>Can the surgery be repeated again if the surgeon is to conservative?

Yes, but I would only want to do it once. Find the best surgeon that you can and most experienced in this particular surgery for optimum results. Others have had it done more than once. They may comment on this. I believe that Alan already has.

>>If my Dystonia is more involved than just Blephs does this matter?

I'm not sure but I wouldn't think that it would make a difference in having a myectomy done.

>>Why are doctors writing that the reoccurrence rate is <90% in those with Myectomy?

Reoccurrence of what? I don't know that I understand your question. Your BEB will not be cured with a myectomy.

>>Dr. Frueh says " we now reserve surgery for patients who are refractory to the toxin or cannot return to periodic injections "?

I have not heard of Dr.Frueh. Botox worked for me but could not correct my problems of apraxia. There are various reasons for a myectomy to be a viable treatment option. Many times functional cosmetic problems need to be corrected. I was getting botox before my upper myectomy and will continue to get it but in a more limited area and at a reduced dose. Everyone with BEB does not need surgery. Botox and medications work well for many and allow them to be quite functional. I was not one of them, though.

>>I realize that the muscles don't regenerate after myectomy but nerves do and blephs can return.

If the muscles are no longer there, the nerves can not make them spasm and squeeze. The muscles do the squeezing and pulling. The surgery does not make your Blepharospasm go away, it just removes some of the offending muscles. You will continue to have spasms, pulling, or squeezing where muscles remain. I only had an upper myectomy-meaning that all of the squeezing muscles in my upper lids were removed. They no longer cause me problems and I will not need injections in this area. My lower lid muscles are still intact and they still pull up and spasm but the botox relieves this problem area.

>>When they did your upper myectomy did they make a brow incision?

Different surgeons do the surgery differently. Dr. Anderson only made one incision on each eyelid and that was in the crease line of the upper lid. He did all the work from that one incision on each eye.

Your other comments on stress and eyes closing when someone is looking at you or talking to you and the sustained closure is very typical of those with BEB. I definitely can relate to all those things as can most of us. You are not alone with this.
The stress factor and having really bad eye days is one reason that we occasionally have a "pity Party" or some other fun thing as an outlet to just be able to laugh at something. I'm just glad that at this point, I can laugh at some of our predicaments and things that happen to us.

Sorry this is so long.
Please ask whatever you like. Others may have some different information for you or a different take on things. We're not doctors, we just have information that we have gained from dealing with this disorder and research and listening to others.

Shirley in AR.


--modified by Shirley-Arkansas-USA at Tue, Jul 17, 2001, 16:54:42




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Dark glasses

Re : Thanks for the welcome --- Curtis Dylan
Posted by Joann Humphrey , Jul 17,2001,18:42 Top of Thread Archive
I wear dark glasses a lot. People can stare but at least they cant see my closed or droopy eyes.If asked I talk about blepharospasm & tell them bright lights really bother.



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Thanks for the welcome

Re : Thanks for the welcome --- Curtis Dylan
Posted by Curtis Dylan (curtis dylan,Curtis Dylan), Jul 20,2001,14:09 Top of Thread Archive
Hi, thanks for your answers. It appears to me that the news about Myectomy has been explain to me as a cure. I guess I was wrong. Thanks again for all you help.

Does anyone have any tricks or other suggestions for alternatives that help with Blephs other than the usual oral meds. I must do something soon to help with my blephs. Certain activities must improve for me or I am going to be worthless. Guess I was hoping for better news or a cure
in this myectomy.
thanks a bunch - Curtis




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Thanks for the welcome

Re : Re: Thanks for the welcome --- Curtis Dylan
Posted by Shirley-Arkansas-USA , Jul 20,2001,15:20 Top of Thread Archive
I would run and not look back from whomever told you that a myectomy was a cure. There is no cure for BEB at the present time. Only treatments that work with varying degrees of success for some people. Sorry, but you need to know that. I believe that there is like a 5 to 10% remission rate. The reasons are generally unknown for the remissions. Some people do improve and attribute their improvement to various things but none of which seem to be consistent to help the majority of people with BEB.

You have mentioned that your dystonia is widespread. What other forms of dystonia do you have or what symptoms do you have with these? You might check out the dystonia bulletin board also. You can get to it by scrolling down to the very bottom of the bb page and click on where it says Dystonia bb. You may already be aware of their site if you have multiple dystonias.

What activities are you specifically needing to improve or have help with? If you might be a little more specific, there might be someone out there reading this that could offer a suggestion for a particular thing. I understand your feeling of worthlessness. I've been there.
Hang in there and keep asking questions. Sorry to be asking more than I am answering.

Shirley in AR.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Thanks for the welcome

Re : Thanks for the welcome --- Curtis Dylan
Posted by kathy , Jul 20,2001,15:37 Top of Thread Archive
i am sorry you are having problems, curtis. i am the horrible person who had the pity party and enjoyed it. any time you have a problem , you can just post a message to start a new thread. do you have BEB along with MS? did these 2 misfortunes come together at the same time?



Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile