Philly support group meeting results in new doctor


Posted by coleen dennis , Oct 30,2001,17:48   Archive
That support group meeting in Philly on Sunday was a real Godsend for me. I got to talk with a ocularplastic surgeon and he advised against my having surgery yet. Yes, this is the same info from some of you that I need to wait get the blepharospasm under control and wait until all else fails for surgery. It is hard when both your Botox doctor and the surgeon he sends you to advise you to have surgery so soon but I guess I need to listen more to those who have been through it than some doctors that earn there living by Botox and surgery.

I really liked this doctor and found that I am able to go to him with my insurance. He is with the Wills Eye Hospital. I don't get to go until 12/12 but I have asked for Botox that same day and his office said that is fine.

My present doctor does not feel this is a disabiling condition and the attorney that spoke at this support group says that if I ever get to the point of needing disability I will not get it without documentation from my doctor and this doctor is in the dark on that issue.

Now that I stand back from the situation I think I was going to do the surgery out of frustation with present doctor and work wanting me to get healed quickly. I have to do what is best for me and not what others want. This is a part of who I am now and I need to work through it in my own way not others.

Coleen in Central PA who is excited about a new doctor that will listen to what I am saying for a change.




Recommend Current pageAuthor Profile
Replies to this message


Re: Philly support group meeting results in new doctor

Re : Philly support group meeting results in new doctor --- coleen dennis
Posted by Shirley-Arkansas-USA , Oct 31,2001,09:17 Top of Thread Archive
Hi Coleen. I'm very glad that the support group meeting was helpful for you to understand your situation in a different light.
I also wanted to be "healed" quickly so I do understand. I'm certainly not against the surgery, I just hate to see anyone rush into it when they are so early into this. There are other options and I just feel that they should be given a fair trial.
I've heard good things about Wills Eye Hospital.

Without supportive documentation from your doctor, disability will be difficult to impossible to obtain. It is extremely important.

Good luck to you with your new doctor. You are doing the right thing by going to the support group meetings and learning as much as you can about Blepharospasm so that you can make your own knowledgeable decisions about your care. The more that you learn from a variety of sources, the easier it will be for you to make decisions that will work for you. We offer a lot of advice and suggestions on the bb but one has to weed through the information and go with what is best for you.
My advice may not work for you but someone else's may.

Shirley in Arkansas




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Philly support group meeting results in new doctor

Re : Re: Philly support group meeting results in new doctor --- Shirley-Arkansas-USA
Posted by coleen dennis , Oct 31,2001,18:14 Top of Thread Archive
Thanks, Shirley, for your response. I have heard good things about Wills Eye Hospital and look forward to meeting with the new doctor there.

I think I could deal with this easier if I was not working and watching the reactions of people I work with. As I have limitations already from my surgery for breast cancer and the fibromyalgia I find my limitations are looked on by some of my co-workers as excuses. If they only realized that I would LOVE to be able to do more instead of less.

Yes, one of the reasons for changing doctors is that I am not looking forward to be disabled, but if this should progress to that point, I certainly want to have all the documentation to be there. I guess that is the Boy Scout's Mom in me...always be prepared!

I always appreciate your "give it to them straight" talk as well as your ability to laugh at life.....take care....Coleen in PA who can't seem to write anything less than 4 paragraphs.....help!





Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Philly support group meeting results in new doctor

Re : Re: Philly support group meeting results in new doctor --- coleen dennis
Posted by Shirley-Arkansas-USA , Oct 31,2001,23:49 Top of Thread Archive
Hi Coleen,
When I first started having problems with this and was still working it was very difficult. I had a tentative diagnosis from an optometrist but couldn't get in to see the "expert" for a time and wasn't getting any treatment. I was having difficulty driving and the paper work was becoming a nightmare for me. Get this, I was screening elementary kids for hearing and vision problems. If I hadn't been doing it for years and knew the diagrams and letters and which way they pointed by heart, I wouldn't have been able to continue as long as I did. I couldn't see what I was asking them to see. Without a "real" diagnosis, my husband and boss just thought it was all stress related. Excuse me but hell, yes, I was stressed. I couldn't keep my eyes open and I didn't know what was wrong or how to fix it. I really thought, in the beginning, that I was going to go see that expert and he was going to be able to "make it all better". He didn't even want to give me the injections when he saw me. He told me to come back and see him when it got bad enough for the botox. I couldn't believe it. Everyone kept telling me not to quit my job. I couldn't for the life of me figure out how I was going to keep working, though. I, very simply, could not do it. I took sick leave and kept waiting for the injections to make it all better. They did not and still don't.
I didn't take out the disability option with my work as I didn't think that "I" would ever need it. I was the care giver. I was the nurse. I could not ever imagine myself disabled. The word doesn't "sting" quite as bad as it once did.

I remember going back in to work (my boss picked me up) for a meeting at the beginning of the school year and my co-workers kept looking at me squinting and not being able to keep my eyes open unless I was talking. They knew that I wouldn't be back and I did, too. I felt very much like I didn't belong anymore.

Sorry that I've gotten off on my soapbox again. I do hope that you are able to continue working if that is what you want. Being prepared is a good thing, though and you do need a doctor that understands this disorder and I believe that you are on the right track with that. There are many people with this that can continue to work. Everyone's symptoms vary to some degree and you will just have to make the decision as to what you can do.

Keep on with the four paragraphs. Make them long or make them short.

Shirley in Arkansas where it is past my bedtime.




Recommend Original Message Top of Thread Where am I? Current pageAuthor Profile
Re: Fascinating reading - doctors memos for 2nd opinion

Re : Re: Philly support group meeting results in new doctor --- Shirley-Arkansas-USA
Posted by coleen dennis , Nov 02,2001,21:00 Top of Thread Archive
Hi Shirley,

I wanted to let you know that I just received my packet from my neuro-ophth and ocularplastic surgeon to take for the 2nd opinion at wills Eye next month and was I surprised! Since my neuro-ophth sent me to the surgeon I was under the impression that he felt I should have surgery before he could give me more Botox. In his last memo that a copy went to the surgeon he states that he wants me to have the amount of Botox optimized (spelling?) before I have a myectomy. Apprarently the surgeon and I didn't understand that. The surgeon went ahead with scheduling surgery after the 2 sets of injections and I thought the neuro-ophthal wanted it that way. His memo says otherwise and actually agrees with the ocularplastic that I talked to at the support group last weekend. He is the one I am going to see in December.

I have decided that anyone I have treat me for this in the future, copy me on any documentation so that I am fully aware of what they are saying. Sometimes when I am going through things I may not understand or remember everything. Seeing it on paper helps.

Does anyone else have this problem with miscommunication with doctors? Has anyone ever gotten anything in writing?

My writing must be like my chewing, I can't write anything short and I can't swallow without chewing 50 times....Coleen in Central PA





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