[sutan351]

in reply to: Caldwell-Luc Method for Orbital Decompression #1171834

Thanks Kimberly and Shirley for your responses.

I’ve already had bilateral 3-wall decompression. But in this Drs. opinion it was not as aggressive as it could have been. My hertel measurements are around 21-23 (depending on the day and whose is doing the measurements)

This Surgeon like I said is fairly young and referred to often my other Drs. A surgeons surgeon! He is either that good or way out of the loop and I want to hope he’s that good! My situation is definitely an outlier ….not the typical ‘in the box’ steps of OD, Strabismus and Lids.

He’s suggesting this procedure to get at the back Orbital bone that can’t be accessed from the eyes. The whole idea makes me a little squeamish, but than again I like the idea of no eye swelling, bruising or stitches! He also feels by decompressing my eyes 3mm (in his estimate) it will make the lids upper and R. Lower lid lag easier to fix.

Shirley…..I’ve been thinking of you and know you had that graft from your mouth late last year. Was that a similar procedure? Or did they just take skin? Are you healing Ok?

I also searched the web for this procedure and found someone on forum mention it a few years back. I need to find that name again and send a PM and hope they respond. I just think it’s odd that none of the Drs. at the conferences are talking about this procedure. This surgeon is not an ENT he is a M.D,, FACS – Orbital and Oculo-Facial Plastic and Reconstructive Surgeon.

All these difference opinions make it even more confusing!

Thanks for listening….
Sandy

[sutan351]

in reply to: STRABISMUS (Eye Muscle) SURGERY, ANYONE HAD IT LATELY? #1065278

Reggie,

I you look back on this posting – I think you’ll see some of my comments. I’ve had two eye muscle surgeries and am still dealing with double vision and now have close up double vision. In my experience Strabismus is a very trickly surgery and moving one muscle can cause double vision at another angle. There is no exact science and the goal of the surgeons is to have you seeing single vision in primary gaze and when looking down. If you had that not sure why they recommended you proceed with surgery. Double vision is very frustrating I can relate. I can get single vision straight ahead with glasses that have a prism correction, but the downgaze is double. And my downgaze was single vision before my two muscle surgeries. My surgeon is reluctant to do another correction – can make things worse. Still dealing with that decision, because I’m not happy with my current situation.

As a surgeon told me early on…..surgery is a slippery slope! I’ve had 5 since my dx with Graves. Some things are better , but my vision is still an issue.

Sandy

[sutan351]

in reply to: Surgery and TED #1169079

Wendy,

I just sent you a long private message but wanted to mention one more thing after reading you original message. I also did some Dr. hoping and one message was consistent….get your thyroid under control before you treat your TED. For me this translated into trying meds for nearly 2 years to treat my Hyperthyroidism. My TSH was under control for the most part, but inconsistent and since I wanted to address my eye issues I went ahead with RAI in April 09 and was Hypo by Sept 09. Then waited a year before Orbital Decompression and 9 mos before my first eye muscle surgery.

When I was first diagnosed with Graves I remember reading about Hypothyroidism and not relating. But that is the place most of us settle in and with Levothyroxine my numbers have been much more stable. My endo keeps my TSH on the very low end, which I’m fine with. The endo’s are great for the TSH/TSI etc. but you need to keep pushing for a good Opthamologist in your area. Another thing I found is some of them do one of the required surgeries, but not all. In my case I needed Orbital Decompression, Eye Muscle and Eye Lids The Dr. I mentioned did all three….which is also questionable because it’s hard to be an expert in all of those areas. The most challenging is to find a good strabismus specialist!

Best of luck and stay in touch,

Sandy

[sutan351]

in reply to: Surgery and TED #1169077

Have to say I’m on the other side NOT THRILLED with eye muscle surgery. I wish I could express a better story. Surgery is a slippery slope and I would proceed very carefully. I’ve had two muscle surgeries this year and other than better pupil alignment – am much worse off. Sure my husband can attest to that, because I express it daily.

Strabismus may help some with Double Vision, but I truly believe Drs and others make it seem like an easy fix. It’s not an exact science and even more complicated if you’re dealing with horizontal and vertical images, as I do. And muscles that have become fibrous and scarred.

Before I had my first surgery I wish I had taken better daily notes of my eyesight and tried prism glasses. Now after two surgeries I’m wearing glasses with a ground in prism (for distance) have close up double vision and a great deal of difficulty reading and writing. I have to look a little sideways which has led to neck issues. The Dr. on the first surgery over corrected (in my opinion) and he was at a premier medical facility in the country. Since the muscles continue to adjust after surgery it’s better for a surgeon to be more conservative. The second surgery corrected some of the damage from the first, but still the closeup DV is an issue.

I remember a neuro-op telling me early on that close up DV was always a risk and to not consider any surgery (including OD -). I constantly try to replay where I went wrong in this decision process of dealing with my TED. I thought I had it bad before, but now know it can get much worse.

There is no reason you can’t try Fresnel (press on Prisms) before getting glasses with a ground in Prism to see if that helps. I’ve had Prisms of all varying degrees some much stronger than others. And take daily notes of your dealing with your Double Vision. And ask a lot of questions before proceeding with surgery.

In terms of the surgery – it was manageable and the healing was OK nothing like Orbital Decompression. But as I stated, when I opened my eyes after that first surgery…all was not OK immediately. At a cross roads now to push my Dr. for another surgery or deal and move onto eyelid surgery.

Sandy

[sutan351]

in reply to: SURGERY TOMORROW-palatal graft to lower eyelid #1169137

Shirley,

Thinking of you as your surgery date is finally here. Very anxious to hear more about this surgery and your result. I have an appt. with two surgeons the end of October to discuss my lid retraction surgery and what can be done about my lower lid on the right side. The surgeon that did my muscle surgery is hesitant to do another….so dealing with restricted mobility of my right eye on downward gaze and the double vision is that plane of sight. Straight ahead OK with prisim correction.

Best Wishes for a Speedy Recovery,

Sandy

[sutan351]

in reply to: Recurrence of TED after orbital decompression surgery?? #1071537

Have to jump in here and also add a few ?? of my own. For anyone new to Graves…take time to ask questions and know this is a disease of patience and things move very slowly. Acceptance of that will help lessen the stress. This is a VERY helpful site!

I’ve had Graves since Fall 2006 and waited until May 09 to have OD. In Jan 2011 had my first Eye Muscle surgery. My TED was stable (although never good), I had to tilt my head slightly to see single vision, but no Double Vision up close. I almost opted out of the Eye Muscle Surgery going straight for the Eyelid Retraction Surgery. At this time I was dealing with DV (although with a compromised head tilt) but not wearing prisms. I do wish I had taken better daily notes of my symptoms and DV severity.

Shirley I know you had good results and I wish I could say the same. I was at one of the most reputable Hospitals in the country, and my Neuro Opthamologist did my OD. Hard to find a straight Eye Muscle Surgeon (but often better). The first surgery made things WAY Worse and I had DV up close. Second Surgery helped undo the over correction of the first, but now have DV looking down, up, sideways and up close. That was always the risk.

Have since come to my own conclusion that Eye Muscle Surgery is like a game of twister. You detach one area and reattach another and it changes the configuration…i.e correction (prism) and range of DV. There is no exact science to this surgery. My new Strabismus Specialist (Eye Muscle Surgeon) does not recommend a third surgery. Very difficult for me to read and glasses (now with a 6dp) prism come off and on all day long.

A few comments/questions

* Has anyone had success with Vision Therapy ? I went to a Opthamologist that specializes in this and he did a through exam for a prism correction – but the cost of the actual Vision Therapy is very high. Most Surgeons will dismiss this treatment.

* Trying to map out a next step to push for another muscle surgery, see another Dr., or just go for the Lid Retraction and Lower Lid. I have a great deal of exposure ( can see the whites all around my eyes).

* I continue to use drops 6-8X day and ointment, cold compress and ice at night. Wind is a problem and I ALWAYS need sunglasses. Light sensitivity is an issue. This is even a problem with indoor lighting (like overhead can lights). Believe this may improve after Lid Surgery.

* Dealing with TED for over 5 years now. Ups, Downs but still dealing….is this normal?

* Just ordered ‘polarized’ tinted/ indoor prescription glasses. My new best friend, although they may look a little silly.

* Does Selenium really make a difference for TED – have that as a priority to try asap.

Thanks for the continued insights. This is such an individual disease symptom wise, which makes it even more difficult. But I do believe ‘surgery is a slippery slope’, as one surgeon told me early on.

Sandy

[sutan351]

in reply to: Decompression/Sinus infection/bleeding #1169283

I developed Sinusitis after OD and had to have Sinus Surgery. I kept getting nodules/inflammation around my eye area (it was treated with antibiotics), but the wrong kind and found out the infections was resistance to the type being used. Something missed by my Opthamologist but caught by my primary Dr., before she would clear me for eye muscle surgery. Wish I had insistent on an ENT being present during my OD Surgery. This may have made a difference.

I also suffer from a lot of Sinus Headaches. Still have a good deal of eye exposure and protrusion on my Right Eye that may also be a contributing factor.

Sandy

[sutan351]

in reply to: Decompression Surgery: Pre-Op Meeting Questions to Ask? #1061871

I will also add a few comments that may help you (or others) considering Decompression.

Shirley and I’ve had similar surgeries, but with different results. Another Confirmation that Graves and especially TED can take a uniques course for everyone.

I had a Great Deal of pain – mostly after the first 24 hours. I guess after the anesthesia really wore off! Best way to describe (for me) was like getting hit by a baseball bat (not to scare you….because I would do it that surgery again, but ask a few different questions). BUT after two weeks, the pain subsided. I did use my pain meds, and never let too much time pass in those first few days, but did ween off.

I would also ask about the presence of an ENT. I developed a Sinus Infection on my R. Eye that brought little bumps to my Orbital Rim and outer Eye Area. Turns out, 6 months after Decompression I was diagnosed with Sinusitis. As a result I had an Orbital Mass that also was removed from my lower Orbital Rim (after the OD Surgery). This surgery may have been avoided with the right antibiotics. As a result my lower lid rim is lower on my R. Eye.

You may also want to ask about how far they anticipate going to reduce the the bulging of your eye. In the end mine was only about 2mm for each eye. I did have big eyes before and have less protrusion, but still have some. More noticeable now, since I haven’t yet had any cosmetic work.

Best of Luck to you and plan on laying low for a few days! My recovery was a good two weeks.

Sandy

So…always, always – ask A Lot of ??? Make sure you have clear sinus as well and if possible have an ENT present or a Cat Scan prior to the surgery.

[sutan351]

in reply to: TED-anyone had a palatal graft to lower eyelids? #1062042

Hi Shirley –

Did you get anymore information on this procedure? What does it involve? I have a Right Droopy Lower Lid (a result of the orbital mass that was removed from my lower lid rim) – lovely complication from the OD and a sinus infection that I developed.

And still dealing with WAY Worse Double Vision than before my 1st Eye Muscle Surgery. I have a 19dp Prisim in my eyeglasses. I need to address that first, now they want to do eye muscle surgery on my other (fairly good) eye – so I guess I’ll have even more of the whites of my eyes showing on both sides. Sigh….so tired of this.

Anyway, trying to keep the big picture in mind. Seeing single vision is extremely important, but so is moving towards cosmetic corrections that will make my eyes look somewhat even again. Not sure if this is in the cards…but what I’m hoping for.

I know we’ve had similar surgeries to date and was curious about this lid procedure.

Thanks,
Sandy

[sutan351]

in reply to: Acupuncture/Chinese Herbs #1062636

Thanks Kimberly – Much appreciated.

We have a few folks in my area that come highly recommended. I’ll be sure to let you know how things go, if I proceed.

Sandy

[sutan351]

in reply to: Acupuncture/Chinese Herbs #1062634

I’ve been thinking about looking into Acupuncture for my Eyes after dealing with worse Double Vision from Eye Muscle Surgery. Do you know of anyone that has any success with this treatment. Trying to find some information on the internet…but you know how that goes.

I’m 3 weeks post surgery (eye muscle), but now dealing with close up DV( never had before) and having to look a little sideways to see single (a little). Waiting on glasses today with ground in prisms and also considering Vision Therapy….before looking into a second surgery.

Thanks,

Sandy

[sutan351]

in reply to: Driving and Ted …Conflicting Advice..cont… #1062672

Thanks for the feedback Shirley – I appreciate your input and it always gives me encouragement to keep asking the tough questions. I did get a script for prisms in my glasses (at least temporary) this week – haven’t picked them up yet….but hopefully they’ll help with my driving issue for now. I will definitely be sticking to daytime driving as well!

Do you remember the name of who had eye muscle surgery results similar to mine. I would love to talk to someone that had to have a second surgery. This road has been long and although I was mostly happy with the Orbital Decompression..the resulting sinus issues and worse Double Vision or exactly what one surgeon warned early on could happen.

Now I’m pretty much stuck staring over in my local area trying to find another surgeon. I’ve gone through a few locally with terrible bedside manner etc. I’m also looking into Vision Therapy and possibly acupuncture.

How are the results from your Eye Lid Surgery?

Sandy

[sutan351]

in reply to: DRIVING AND TED #1063054

So Glad this topic hit the boards right as I was ready to post my frustrations/questions…..I’ll get to the driving issues….

FindingMe hit it right on with the conflicting advise I have received for years. I finally found a surgeon at one of the best facilities in the country that gave us hope years back. (This after going to 3 different surgeons locally – all with different opinions. Some said NOT to do OD or Eye Muscle Surgery). This surgeon suggested to "treat my thyroid" (finally had RAI in Apr of 2009) and then consider OD before determining if Muscle Surgery was necessary.

Had bi lateral OD in May of 2010 and developed complications which included 2 additional surgeries. I started to develop bumps under my R. Eye that would come and go after the OD. Finally discovered, I had Maxillary Sinusitis that caused an abscess under my eye that had to be removed and then needed Sinus Surgery (before this surgeon would do Muscle Surgery)…My Advice to anyone getting OD – Press your Dr. to have an ENT Present (if possible). This Surgeon completely missed the fact that 2 rounds of antibiotics didn’t help clear my sinus issues. Which likely caused the infection and the abscess.

Anyway….after the OD – my Double Vision got worse and the alignment of my eyes were even more off. Because now my R. Lid was even lower (because of the surprise abscess removal surgery). It was agreed that I needed Eye Muscle Surgery to correct this alignment and my DV. Otherwise doing lid surgery on misaligned eyes would look even more weird!

Unlike Shirley (So glad you had success)…..I have Even WORSE Double Vision and up close DV – which was my biggest fear. I finally started to drive the back roads – after TWO Weeks. And have ventured out a little more this week. Before the surgery I could tilt my head up and see single, but that spot is now gone. Feel like I look a little sideways and need to blink and stare to get any Single. It’s a CONSTANT thing and now starting to give me neck pain from the constant head maneuvering!

Hopefully, my eyes are still correcting – but feel like a REALLY need a 2nd eye muscle surgery…and all this to get to the Eye Lid Surgery, which I desperately want for the cosmetic reasons. Post Op (1 week after) – this surgeon felt "the surgery was a success and my eyes were aligned"….BUT I am still seeing DV and close-up DV….what a nightmare!

So tired of it all and tired of my family/friends asking how things are going! Blah Blah Blah…I feel better than two weeks ago, but dealing with VERY Stressed eyeballs. I’m lubricating (often) and trying to remain optimistic. Gratefully – I’m not working. Would not have been able to work – Because I CAN"T SAFELY DRIVE or look at a computer/read for long.

Drs. DO totally avoid this issue and make it seem like no big deal to cover one eye. And if you do cover one eye…you can’t uncover while driving or you will experience the blurriness and enhanced DV that you experienced on the Hwy.

I’m 3 weeks post Eye Muscle Surgery this Thursday – Really need to start driving (very fearful of this)…I go to a local Optometrist on Friday for an exam and may get measurements for prisms. Feeling like I’ve taken 2 Giant Steps back on this very long journey!!! More fatigue and overall diminished health from Fall 2006 when I was dx – with Graves/TED

Sorry for the RANT – my husband has been patient…but many of you on this site can relate much better!

2 Questions – Has Vision Therapy or Eye Exercises worked for anyone. My Neuro- Opthamologist of course dismissed this!
What about acupuncture?

Ugh…..starting these surgeries can be a ‘slippery slope’ as I’ve experienced. But hope to get to the top of the slope soon!

Sandy

[sutan351]

in reply to: STRABISMUS (Eye Muscle) SURGERY, ANYONE HAD IT LATELY? #1065261

Thank-you Shirley and Blessings for all the good information on Eye Muscle Surgery. Shirley, I look forward to hearing your feedback after 9/22. I had OD on May 18th with ok results…but still have a good bit of double vision (unless I tilt my head upwards). I think it’s even a little worse after the OD, which was anticipated. I can see without double vision close up. My biggest fear in having the Eye Muscle Surgery is getting double vision close and needing prisims to read. After the OD, my next step was to have Eye Lid Retraction, but since my eyes are still uneven my Dr. is recommending the Eye Muscle Surgery for best results. And to address the double vision issue of course. After OD my eyes definitely settled more and the extreme pressure was off. Also had a lot of success with the swelling under my eyes. I still have light sensitivity and dryness at night – but believe this is my ‘new norm’. I REALLY wanted to move directly to the Eye Lid Retraction, because this is the most physical damaging issue to deal with. Although my eyes are less ‘Bug Eyed’ they still look weird with a lot of whites exposed above.

But, I’m trying to follow the recommended timeline of surgeries in this VERY slow course of a disease. I was first diagnosed in Fall 06 and didn’t have RAI until Fall 09 and OD in Spring of 10.

One question I did have for either of you or anyone else familiar with Eye Muscle Surgery is the actual surgery. I was told you are awake…as they need you to sit up and look out to measure progress during the surgery. This sounds dreadful and gives me the heebie jeebies in a big way. But I guess if I could survive OD, I can get through this one and 1 step closer to EyeLid Retraction Surgery. Any comments on how the actual surgery are appreciated.

I go to my Dr. next week to get more info…but I find it’s even better to talk with actual patients.

Thanks,
Sandy

[sutan351]

in reply to: New to this. I am Really Confused. #1065355

Hi Allison,

I still remember when I was first diagnosed….the endo we saw initially immediately recommended RAI. I was still reeling from being diagnosed with Graves and TED (I had the bulging eyes and double vision)and felt I needed time to understand what I had and A LOT more information before proceeding. I waited a while (over 2 1/2 years) because I was dealing with the eye issue and wanted this to run it’s course. I tried the ATD’s and was never quite able to stabalize on my own. The second endo I went to was much more understanding and willing to let me elect RAI when I was ready. When I did go through with the procedure I felt much better about the decision. Your timing may be different and many do chose RAI soon after diagnosis …but no need to do that immediately if you feel you need more time. Graves is a disease of patience! Take time to educate yourself and use all the wonderful resources/info from this board.

Best of luck and remember to be kind to yourself during this journey.

Sandy

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