Author Topic: 1 year post-op and first post  (Read 8331 times)

Cheryl C

  • New Member
  • *
  • Posts: 33
1 year post-op and first post
« on: October 09, 2009, 11:08:35 am »
Greetings!
I hate to say this, but I have just now figured out how to post :)  I have had a very successful year's recovery since surgery on September 25 of last year - as with everyone, not without the ups and downs - and have a promising outlook from my surgeons for future healing.

I haven't seen this particular issue addressed, though.  I have had an external eye weight for the past six months and have been very pleased for the most part.  On my last visit to the opthalmologist, he saw blood vessels under my cornea that had not been there the previous visit.  I then went to a cornea specialist.  I'm currently using steroid drops and will see both eye drs 3 weeks from that visit (I am 2 hours away).  The cornea guy meanwhile strongly suggested the implanted weight (he'd never seen an external one until mine.)  My eye is just a fraction away from completely closing when blinking/winking, and my otolaryngologist had said to give it about 3 months to come back to normal.

Since my eye is improving with the external weight, is there a true benefit of having the implant, other than cosmetic?   I sincerely feel I can do without the implant, but am I just being stubborn?  I want to do what's best for my eye, but there is just such a short time involved - hopefully.

Thanks to all of you for your willingness to share.  Because of the knowledge I gained through various stages/issues of AN, I have been able to approach my physicians with confidence and with insight that they sometimes were not aware of.
Cheryl C
~4.5 cm AN
Surgery 9/25/08, Medical City Hospital - Dallas
BAHA installed 1/09
External eye weight 3/09
Platinum eye weight & partial tarsorrhaphy 9/09
Scleral lens 3/14
Tarsorrhaphy reversal 5/14

Doc

  • Sr. Member
  • ****
  • Posts: 376
  • “Shake off the BooHoo and get with the program”
Re: 1 year post-op and first post
« Reply #1 on: October 09, 2009, 12:15:23 pm »
Cheryl,

I just had a Gold Weight Implanted in my Left Eye Lid two days ago and, so far I'm very happy with the results; I can close and open the eye.  First time since AN surgery a few months ago that I've been able to do that.  I've read so many positive stories about the procedure, I'm sure once I've had a chance to fully heal I'll also have many good things to say about it too! 

Take Care!
  ;)
Doc
Left-Translab July '09. Cyberknife Jan 2010. In Apr 2017, four more tumors found; three in the brain and one, 7cm long, on my spinal cord; it was surgically removed. It was cancerous, and so are the others. I've been receiving Chemo since June '18, and I'm still in treatment.

saralynn143

  • Hero Member
  • *****
  • Posts: 1822
  • Sarey Sarey Quite Contrary
    • MVD diary
Re: 1 year post-op and first post
« Reply #2 on: October 09, 2009, 02:36:27 pm »
Cheryl, if your otolaryngologist thinks you are just three months away from a normal blink, I would stay with the external weight. You'll barely be past getting over the surgery before it would come back out.

I am really happy with my implant, but I tried an external weight first because if I am able to avoid surgery, I will. Unfortunately the external weight kept rolling on my eyelid and just wouldn't work right. I know quite a few folks who have been successful with it, though.

Does your ophthalmologist think the external weight contributed to the problem with your blood vessels?

Sara
MVD for hemifacial spasm 6/2/08
left side facial paresis
 12/100 facial function - 7/29/08
 46 - 11/25/08
 53 - 05/12/09
left side SSD approx. 4 weeks
 low-frequency hearing loss; 85% speech recognition 7/28/08
1.8 gram thin profile platinum eyelid weight 8/12/08
Fitted for scleral lens 5/9/13

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: 1 year post-op and first post
« Reply #3 on: October 09, 2009, 03:00:07 pm »
Cheryl~
That is my question too - did the external weight contribute to the corneal problems & if so, wouldn't the permanent one cause problems too??   ???  I have had both as I have permanent paralysis and I don't see any difference except it being under the skin.  I, personally, would hold out for the permanent (even though the surgery is a cake walk & is easily reversible) if you are almost able to close it completely!
Good Luck!

K
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

Cheryl C

  • New Member
  • *
  • Posts: 33
Re: 1 year post-op and first post
« Reply #4 on: October 09, 2009, 04:13:28 pm »
Thanks for your input!  Saralynn, I held out against surgery for exactly the same reason,  if I could avoid another surgery, I would.  (Had the BAHA surgery shortly after AN surgery).  Two doctors tried to coerce me to go with implant surgery and not the external weight, but I'm glad I stuck with my intuition.   Kaybo, my logic is the same as yours - same weight, just different locations.  The ophthalmologist wasn't sure what was causing the problem and referred me to the cornea dr, who in turn said it was from my nerves not allowing my eyelid to close 100% when blinking (dryness).  After thinking about it later, I think it may be due to a stupid action on my part earlier (going without the weight for half a day, thinking I didn't need it any longer) :-[  Plus, a plug I had earlier had come out without me knowing it.

I know it remains to be seen ::) with the next visits, but I just wanted some thoughts on this other than mine.  DoctorB, glad you are doing well with your implant. I've read enough posts now that I'm sure the implant is a good thing - I just want to wait it out if I can.  I'll let you all know what happens in about a week and a half!
Thanks again.
~4.5 cm AN
Surgery 9/25/08, Medical City Hospital - Dallas
BAHA installed 1/09
External eye weight 3/09
Platinum eye weight & partial tarsorrhaphy 9/09
Scleral lens 3/14
Tarsorrhaphy reversal 5/14

cyrmom2

  • Jr. Member
  • **
  • Posts: 72
Re: 1 year post-op and first post
« Reply #5 on: October 11, 2009, 09:58:42 am »
Hi Cheryl. 
I have been using an external lid weight for the past three weeks but I'm tired of the daily application.  I have a consult for the gold weight implant this Wednesday.  Hopefully the implant will enable me to wash my face and hair without getting water or soap in my eye; and, to have my upper lids look symmetrical. I hope these are realistic goals.

Cyndi
diagnosed 7-27-09 4 cm CPA
12 hr translab 8-25-09
Dr Chicooca & Dr Welling at OSU/The James
sliver of tumor remains on brain stem
left SSD & facial paralysis (was 6/6, 2-3/6 at 9 weeks, 1/6 within 4 months) 6 month MRI on 3-17-10.

nancyann

  • Hero Member
  • *****
  • Posts: 2251
  • carpe diem
Re: 1 year post-op and first post
« Reply #6 on: October 11, 2009, 11:14:27 am »
The weight will definitely bring more symmetry to your eyes.   I still hold my eye closed with 1 hand when rinsing out shampoo in the shower.  Even with the weight my eye still doesn't close all the way,  but then I have Brackmann Grade 6 paralysis.   I don't know if others with the weight are able to close their eyes all the way.

Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: 1 year post-op and first post
« Reply #7 on: October 11, 2009, 11:27:58 am »
Cyndi,
I agree with the others to wait since your eye is almost closing all the way. Is your facial nerve intact post op and stretched, thinned or whatever?

Can they do a nerve study to determine facial nerve function?

My facial nerve was cut, so there was no other way around the implanted weight.

Yep just keep that outer weight on and lubrication is vital.
Good luck,
maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

Cheryl C

  • New Member
  • *
  • Posts: 33
Re: 1 year post-op and first post
« Reply #8 on: October 11, 2009, 02:23:04 pm »
I occasionally ask my husband to help me wash my hair in the kitchen sink so I can hold a towel over my eye and not even let it get wet ... he's such a trooper.  Nursing would have been a great profession for him!

I'm feeling better and better about waiting it out, especially with all the forum input.  I was a Grade 3 three months ago, and I didn't even ask this last visit, but I know it's better.  I've been extremely fortunate that my eye has kept its shape and not drooped, etc.  I think even my surgeons were astounded.  Still, the eye has been my biggest problem - cold blasts of air-conditioning in stores, cold air when opening freezer and cooler doors, heating, weather - even clerks having portable fans on themselves to keep cool through the hot East Texas heat.   I know they wonder why I dodge them and why I wear big safety glasses, but anything to keep the eye happy!  I know you all relate, and there is comfort in knowing that I'm not in this by myself.  Again, I thank you all for sharing and wish everyone small successes each and every day.

Cheryl C
~4.5 cm AN
Surgery 9/25/08, Medical City Hospital - Dallas
BAHA installed 1/09
External eye weight 3/09
Platinum eye weight & partial tarsorrhaphy 9/09
Scleral lens 3/14
Tarsorrhaphy reversal 5/14

moe

  • Hero Member
  • *****
  • Posts: 1697
Re: 1 year post-op and first post
« Reply #9 on: October 11, 2009, 09:52:58 pm »
Yea I know about that windy heat in South Tx. Which is where we lived when I had my surgery. (Corpus Christi). Now that we are living in the NW, not a problem.
It was a nuisance for sure. The beaches were no fun after my surgery. Keep wearing those glasses!
Maureen
06/06-Translab 3x2.5 vascular L AN- MAMC,Tacoma WA
Facial nerve cut,reanastomosed.Tarsorrhaphy
11/06. Gold weight,tarsorrhaphy reversed
01/08- nerve transposition-(12/7) UW Hospital, Seattle
5/13/10 Gracilis flap surgery UW for smile restoration :)
11/10/10 BAHA 2/23/11 brow lift/canthoplasty

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: 1 year post-op and first post
« Reply #10 on: October 12, 2009, 06:42:42 am »
Hi, Cheryl C

I don't know anything about eye weights - other than what I've read on the Forum - just wanted to say hi and welcome you.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways

Debbi

  • Hero Member
  • *****
  • Posts: 1921
  • Originator of the Magic Scarf
    • Debbi's AN Blog
Re: 1 year post-op and first post
« Reply #11 on: October 12, 2009, 09:46:51 am »
Hi Cheryl-

I used my external weight up until about 7 months, at which point my eye was closing on its own most of the time.  Like several others have said, I just didn't want another surgery, no matter how minor.  The only problem I ever had with the eye weight was an adhesive allergy a couple of times. Other than that, I loved it and would do it again if I were in the same situation.  If you aren't having any problems with it, and if you are continuing to see improvement in your blink, sounds like the external weight might be all you need.  Just make sure you keep your eye well lubricated!  Although my blink is pretty good now, I still don't produce any tears, so gel is my friend! 

Good luck!

Debbi
Debbi - diagnosed March 4, 2008 
2.4 cm Right Side AN
Translab April 30, 2008 at NYU with Drs. Golfinos and Roland
SSD Right ear, Mild synkinesis and facial nerve damage
BAHA "installed" Feb 2011 by Dr. Cosetti @ NYU

http://debsanadventure.blogspot.com

Cheryl C

  • New Member
  • *
  • Posts: 33
Re: 1 year post-op and first post
« Reply #12 on: October 12, 2009, 09:28:19 pm »
Thanks for the welcome, Jan - it's nice to finally be a part the forum instead of just lurking!

Debbi, do you cover your eye at night, and does the wind, etc., bother you any longer?  I'm sooo much wanting to plan a trip next year and having the elements not be a huge factor!  I have a drawer full of lubricant - never leave home without it!

Cheryl C
~4.5 cm AN
Surgery 9/25/08, Medical City Hospital - Dallas
BAHA installed 1/09
External eye weight 3/09
Platinum eye weight & partial tarsorrhaphy 9/09
Scleral lens 3/14
Tarsorrhaphy reversal 5/14

Kaybo

  • Hero Member
  • *****
  • Posts: 4232
Re: 1 year post-op and first post
« Reply #13 on: October 13, 2009, 06:36:47 am »
Cheryl~
For the 1st seven years, I didn't have any type of weight so I used Refresh PM 24/7.  It does distort the vision but you get used to it (I had bad vision in that eye anyway & couldn't correct after the surgery so this was OK).  A salve like that is really the BEST way to keep the eye lubricated - it is still better with the weight, but it is a good alternative.  I live on the "Plains of West Texas" where the wind blows all the time & 40-60 mph gusts are no big deal here - there are just no trees to help break the wind.  I can use a combination of drops & Refresh now - I pretty much know what might irritate the eye.  I wouldn't stress overly much about a trip next year - you might be all better by then anyway!   ;D  My motto is to NEVER let the whole AN/stroke effects limit me from anything I want to do!
Good Luck!

K   ;D
Translab 12/95@Houston Methodist(Baylor College of Medicine)for "HUGE" tumor-no size specified
25 yrs then-14 hour surgery-stroke
12/7 Graft 1/97
Gold Weight x 5
SSD
Facial Paralysis-R(no movement or feelings in face,mouth,eye)
T3-3/08
Great life!

leapyrtwins

  • Hero Member
  • *****
  • Posts: 10826
  • I am a success story!
Re: 1 year post-op and first post
« Reply #14 on: October 13, 2009, 06:59:02 am »
Thanks for the welcome, Jan - it's nice to finally be a part the forum instead of just lurking!

While I don't mind lurkers at all, I think it's so much better to join the group.  It lets you share your experience, ask questions, etc., and we get to interact with you.

Jan
Retrosig 5/31/07 Drs. Battista & Kazan (Hinsdale, Illinois)
Left AN 3.0 cm (1.5 cm @ diagnosis 6 wks prior) SSD. BAHA implant 3/4/08 (Dr. Battista) Divino 6/4/08  BP100 4/2010 BAHA 5 8/2015

I don't actually "make" trouble..just kind of attract it, fine tune it, and apply it in new and exciting ways