Nance-Orbit Decompression/eye options

[Guest guest]

Hi Nance,

I was wondering if you would mind giving me information about what

you have had done with your eyes. What procedures and how your eyes

are after having the surgery? If you dont mind sharing your

thoughts and experiences with me I would really really really

appreciate it.

I have an appointment October 4th with my new Opthomolgist and I am

trying to get more information on what can actually be done about my

eyes... so that when I go talk to him I have some basic knowledge.

I underwent eye lid surgery years ago. They lowered my top lid and

lifted my bottom lid. Unfortunatly the bottom lid has since sagged

so the surgery wasnt anything that really helpful.

My eyes are almost in constant pain ~ sore is how I would describe

it. My left eye is much worse than my right but my right is also

protruding quite a lot.

Sometimes I just hold warm wet clothes over my eyes and massage them

to relieve the soreness.

My eyes dont close all the way when I sleep (WOW I bet thats a sight

for my honey!) Im not sure about when I blink....Ive never really

checked. I also have problems with my lids falling behind my eyes..

I thought this was called lid retraction but from reading I guess lid

retration is just when your eyes look wide open?? I dont know but

let me tell ya it is soooo scary when your lid totally slips behind

your eyeball!! Feels like your eye has popped out!!! Very

frightening...

You are sooooo right when you say that emotionally the GravesEyes

take soooo much out of you!!! Its hard to deal with it when your

looks totally change and you arent comfortable with the way you look.

I hate it!

So not only do you feel bad physically but you feel bad mentally!!!

I really look forward to going to see my new optho...he seems very

open and interested in my case. I hope he can help or at least send

me on the right path....

Any info you would be willing to share with me would be greatly

appreciated!!!! Thank you soooooo much!!!! (((((hugs to you)))))

[Guest guest]

Nance, I am curious,

Was your vision in jeopardy when you had the decompression?

[Guest guest]

Wanted to add something to Nance's post, even tho I have not had any surgery.

My decompression will be done transnasal (when I decide to do it after my

TSI antibodies go down or if my vision is in jeopardy). An ENT and Ocular

Plastic Surgeon will do it together. So I will not have an incision. I have

not read about anyone having this technique, but I have read in medical

journals that it is less invasive and the results are as good if not better

than surgery thru incision.

[Guest guest]

> Hi Nance,

> I was wondering if you would mind giving me information about what

> you have had done with your eyes. What procedures and how your eyes

> are after having the surgery? If you dont mind sharing your

> thoughts and experiences with me I would really really really

> appreciate it.

This will be a long post, but detailed and hopefully can answer some

of the concerns that you have. All of the procedures to date have been

done on the left eye only. Right eye has only minor disease.

2/16/01-orbit decompression, procedure was a little over 3 hrs. My

surgeon is a plastic surgeon that specializes in the disease of the

eye and orbit repair. Made an incision out from the corner temple on

the left side, not longer than a inch. Went down underneath the eye

and removed some of the bottom orbit and part of the left sinus. I

spent the night in the hospital and was patched for a couple of days.

Post surgerical instructions, no bending down, looking down, hold your

head back as much as possible and do not blow the nose. (side story)

the first night home I went to brush my teeth and couldn't figure out

what to do with the toothpaste, without bending or looking in the

basin. So I just let it dribble from my mouth. I was so frustrated and

then on the drugs it never dawned on me to spit into a wash cloth or

cup). I think many emotions were released that night. I had been so

emotional over the cosmetic distortion and then surgery that I was

releasing alot of the frustration. This really helped!) So remember

that, spit into a cloth and wipe your mouth off. Prior to surgery

my left eye had dropped to the bottom of my lower lid line.

After the decompression the inflammed muscle pulled the eye even lower

whereas no eye was visable. They had never seen anything like that

before. Pain wasn't too bad after the first week, and tolerable even

then with pills. Recovery about 3 1/2 weeks. Bad bruising and a very

red eye!

6/1 Both of my surgeons (the other being my muscle specialist)brought

me back in OR to try and lift the eye back into position. Both were

present since they weren't sure if they could reach muscle without

making another incision. They were able to and did the first attempt.

This was the biggest lift they had ever tried and after the first

surgery it wasn't as high as they hoped so.

6/8 I went back into OR for the second lift. They did bring the eye up

and had not tried to do the precision alignment as yet, they were

hoping for better placement first.

Minimal pain with these procedures and off work about 3 weeks.

12/14-Exploratory surgery. My eye had come up on its own and began to

settle except there was a tightness in the muscle and they were

concerned that scar tissue had formed over the muscle and that was

prohibiting movement. My eye started to turn inward some as well. So I

went back in the hospital and they opened me back up through the

temple area. They had to remove a lot of scar tissue and put a film

like substance in the bottom of the orbit to prevent the muscle from

sticking. also in trying to pull the muscle up further they had a

tough time. The cut and tied the muscle off surgically to keep it from

receding again. Some patients can have attacks years after remission

where the disease can flare again. I asked my surgeon about this and

he said that won't be an issue for my eye because it has been cut and

tied. This is not a normal procedure, but my case is severe. The

surgery took alot of me. Plus remember that I have had 3 prior

surgeries in 10 months and with an impacted immune system I don't heal

as well. I stayed the night in the hospital as well, heavy bruising

and red eye again. In January during a follow up visit and not back to

work yet, my doc noticed I wasn't blinking well, and was only closing

my eye 1/3 of the way. So next procedure

2/18/02- Lid retraction this was done as with twilight sleep and was

aware of what was going on. Didn't hurt but its necessary for the

doctor to be able to monitor your eye coverage with blinking and

closing the eye. He splits the upper lid from corner to corner and

then removes the fatty pockets and stitches it back up. This procedure

was under 2 hrs. And I was home early that afternoon. Again a lot of

bruising and this hurt more than the muscle alignments. I came back to

work in March.

Just want to warn some of you. When you have an orbit decompression

they have to cut nerves and from this you have nerve regeneration to

go through. The area is numb after the nerves are cut and eventually

they regenerate. No specific timeline but I was numb from above the

brow line thru the temple area and beneath the cheek line. Some

patients are numb down to their lip lines. When the nerves begin to

regenerate you get a sharp stabbing pain and it lasts a short time.

The unfortunate part is you don't know when it will happen. I am still

experiencing some of this and it is 9 months later. Nerve pain is

different than regular pain and you take different meds. I was

prescribed neurontin.

I still have the precision alignment to go through trying to rid the

double vision. I will have permenant loss of mobility to look up,

limited to the left and down and OK looking to the right. Another

issue is scar tissue that has formed in my lower inner lid. This has

now stuck to the white part of the eye, that they will have to scrape

and remove. Since the lid has been scraped previously they will do a

graft of tissue removed from my mouth and grafted to the inner lower

lid. Oh what fun. I believe they will do both procedures in the fall.

Hope this helps some of you, but remember that my case is BAD and most

patients don't have nearly the complications that I have had. Keep a

positive attitude and remember that finding the right doctors is more

than half the battle. Everyone has down times with insecurity and

please discuss this with your docs. Mine are very compassionate and we

have become like a family. I see one or another at least every 6 weeks

and this is going into the 3rd year. You doc needs to understand and

be compassionate with the emotional issues as well. It's a horrible

disease to fight and believe me the docs feel that way too. The

disease has to run its course through the hot phase. The docs cannot

do anything about it to prevent it. I have held onto one thought

during all of this. Whenever I have a bad day I try to remember that

tomorrow is usually better and it is.

[Guest guest]

Hey Nance,

I hope you didn't think that I was criticizing your doctors and surgeons, cuz

that surely wasn't my intent. I just wanted to add that there are other

options for decompression other than thru incision.

I am sorry to hear that your friend is having a repeat surgery! Ugh! What

went wrong with her decompression?

God bless,

[Guest guest]

> Nance, I am curious,

>

> Was your vision in jeopardy when you had the decompression?

>

>

There was concern on the pressure to the optic nerve. Then with the

eye receding we couldn't get a vision acuity reading. After the

surgery in December that was the first visual we could get.

Considering the eye was hidden for almost a year it seemed a miracle

to me that they had saved my vision. It has improved to 20/40 with an

older prescription lens. Obviously I haven't had a standard eye exam

since this began in 1999. I cried the first time after surgery that I

covered my right eye and could actually see with the left. I was like

that for almost 2/3 of a day

[Guest guest]

> Wanted to add something to Nance's post, even tho I have not had any

surgery.

> My decompression will be done transnasal (when I decide to do it

after my

> TSI antibodies go down or if my vision is in jeopardy). An ENT and

Ocular

> Plastic Surgeon will do it together. So I will not have an

incision. I have

> not read about anyone having this technique, but I have read in

medical

> journals that it is less invasive and the results are as good if not

better

> than surgery thru incision.

>

>

there are several ways to do a decompression surgery but realize

that it depends how severe the protusion is and are the muscles also

involved. My docs were as much concerned of the positioning of the

lower rectus muscle as they were on the optic nerve. A friend is

scheduled to have your type of procedure on 9/5 and this is after she

has already experienced a botched double decompression 18 months ago.

The ENT has a great deal of repair work to do to her sinuses.

Also, my plastic surgeon does belong to a physician chat group with

250 eye specialists and has kept up on all the latest procedures. He

has posted my case and has heard from the Mayo clinic, UCLA and

Houston eye center. All were in agreement for the method of treatment

and are fairly glad I'm his patient and not theirs. Docs do have

senses of humor!!! He has told me on numerous occassion he could be a

very wealthy man for writing a medical paper and then go on a lecture

circuit. I do have great doctors who keep my spirits up.

[Guest guest]

Nance,

Thank you sooooo much for sharing your story with me!!

Your post has given me a lot to think about!

I hope you dont mind if I ask more questions because I am sure I will

have a bunch after I go see my new Optho.

You dont know how much it means to me for you to take the time to

share your experience with me!!

Thank you so much!!

Lots of smiles to you, J

[Guest guest]

J-

I hope I can help others in dealing with this disease. It is a hard

disease to come to terms with. So many people have varying degrees of

eye severity, I hope that when other read my history that will give a

little extra strength knowing you can get through it. It isn't easy if

you have a severe case or even mild. It helps knowing others have

similiar experiences.

Nance

> Nance,

> Thank you sooooo much for sharing your story with me!!

> Your post has given me a lot to think about!

> I hope you dont mind if I ask more questions because I am sure I

will

> have a bunch after I go see my new Optho.

> You dont know how much it means to me for you to take the time to

> share your experience with me!!

> Thank you so much!!

> Lots of smiles to you, J

[Guest guest]

J-

I hope I can help others in dealing with this disease. It is a hard

disease to come to terms with. So many people have varying degrees of

eye severity, I hope that when other read my history that will give a

little extra strength knowing you can get through it. It isn't easy if

you have a severe case or even mild. It helps knowing others have

similiar experiences.

Nance

> Nance,

> Thank you sooooo much for sharing your story with me!!

> Your post has given me a lot to think about!

> I hope you dont mind if I ask more questions because I am sure I

will

> have a bunch after I go see my new Optho.

> You dont know how much it means to me for you to take the time to

> share your experience with me!!

> Thank you so much!!

> Lots of smiles to you, J