[jansm]

in reply to: What my surgeon said #1173152

I believe a good surgeon will tell you the negative things, and make sure you understand them. It is to protect both you and them. It is not what we always want to hear, though. I have much more confidence in physicians who are perfectly honest with me, instead of those who try to sugar coat everything or avoid telling you anything.

I had no choice. My thyroid was enlarged, and only continuing to swell. It grew upwards into my throat, and my voice was already altered. My surgeon actually wanted to wait awhile for surgery, until some of my levels and other health issues were more stable. However, my endocrinologist was worried about the rate at which the thyroid was enlarging, and the fact it was also beginning to harden in some areas.

My surgery was longer than many. The worst things I remember were the iodine drops prior to the surgery, and a terrible neck and head ache afterwards. My surgeon, an ENT, told me later that my thyroid was one of the larger and most bizarre he had ever seen. The neck pain and resulting headache were most likely due to the angle at which my head was placed, in order for him to reach and remove all of the thyroid. My scar is a little higher than we had initially hoped. However, three years later, it is not that noticeable and I normally forget all about it. There is no loss of feeling in that area.

I did lose my voice, and was very hoarse for awhile. My surgeon requested more follow-up visits than most of his patients, due to this. My voice returned, pretty much to normal, after 2-3 months. It probably took several more months before I could sing at church, and I really missed not being able to join in with Christmas carols that year. At the time, I owned a retail store and was still able to work and converse with customers in person and over the phone. I also developed a tightness in my throat when swallowing. I got to experience that lovely scope procedure, too. I agree it is not pleasant. More scar tissue formed than was expected post-surgery. My surgeon administered a series of steroid shots to the scar tissue, through my neck. Again, not very pleasant, but they helped tremendously. There is still a little tightness sometimes when I swallow, but in no way prevents me from eating or leading a normal life.

Even with a few setbacks, I am grateful for the better health I now have. I do not regret having surgery at all. Good luck sorting out the pros and cons. I wish you the best in the treatment finally selected.

[jansm]

in reply to: thyroid and eye disease #1172296

In response to which physicians perform which tests, my oculoplastic surgeon did perform numerous vision tests, including vision field tests, and CT scans. Except for CT scans, most tests were performed in his office.

About 3-4 months following my thyroidectomy, I began to experience the symptoms with which many of us are familiar — eye dryness, redness, gritty feeling, and other pain and discomfort. I normally wore my gas perm contacts 10-12 hours daily, and I could barely tolerate them for a few hours. I did not notice double vision, but something more like jumpy vision. It did feel sometimes like one eye was not moving properly. I attributed it to the contacts not fitting correctly, following my surgery. My eyes never protruded, though.

My regular ophthamologist, who is familiar with TED and has other patients with TED, referred me to a strabismus specialist. He, in turn, referred me to the oculoplastic surgeon.

I live in a large Texas city with many medical facilities. The strabismus specialist suggested bypassing the neuro-ophthamologist in my case. He felt this particular oculoplastic surgeon could, and would, perform many of the same tests as the neuro-ophthamologist. It can often take weeks or months to be seen by the neuro-ophthamologists in my area. The strabismus specialist felt I did not have that luxury. I underwent OD on both eyes about one month later, due to the risk of vision loss. I believe my oculoplastic surgeon may perform more vision tests than many in his field. However, since my experience, I have heard of other oculoplastic and oculofacial surgeons that perform, or have access to, some of the same testing as neuro-ophthamologists.

[jansm]

in reply to: Terrified or orbital decommpression help! #1170742

I was not given much time to panic or even think about my OD surgeries. I learned my case was very severe, and my right optic nerve extremely compromised. My surgeries were scheduled within a couple of weeks after receiving the physician’s recommendation.

I was probably more apprehensive about my thryoid surgery, than my OD surgeries! I would do almost anything to save my vision. If that meant two major surgeries in a short period of time, so be it.
Having gone through several different types of surgery, I can honestly say my OD surgeries were not the worst. Pain was minimal, for me, after the first couple of days. I also did not have any terrible reactions to the post-surgical steroids. The most difficult aspect was finding a comfortable position to sleep, once I no longer had the hospital bed that could be positioned. I mostly slept propped up in the corner of our overstuffed family room sofa, surrounded by lots of pillows. A recliner, if you have one, might work well, too. Recovery was much easier than I anticipated, even though it is difficult to see your eyes looking really ugly. I did panic once, but a phone call to my surgeon quickly put my mind at ease. It is the end result that you need to keep in mind.

There were a few complications with my second OD surgery, and I still have slight numbness on that side of my face almost two years later. I notice only when I brush my hair and apply makeup. However, the important thing is that I have been blessed with two years of vision that could have been lost. While my eyes were not bulging (one of the reasons I and some of my physicians did not realize the severity of my case), I did have the undereye puffiness. People often commented on how tired I looked. My eyes look so much better, and that makes me feel so much better.

I am so sorry for the anxiety you are experiencing. None of us can tell you what is best for you. That must be decided between you and your medical team. Many of us can tell you that OD surgery is very much worthwhile.

[jansm]

in reply to: Just a Few Miscellaneous Questions (Food, Thyroid, OD, etc.) #1170748

I have read comments elsewhere, not on this forum, from patients who did undergo OD on both eyes at the same time. I do not know their reasons, but most admitted it was extremely difficult. They all needed assistance in normal everyday activities, since they could not see clearly out of either eye. I recall at least one of them concluded they probably lost as much time recovering from one large single surgery, as they would have if it had been broken up into two separate surgeries.
My OD surgeries were about 2 weeks apart. While I did have help at home from a husband and college age son, I was still able to see well enough with the non-surgical eye to walk through my home and pretty much take care of myself. It also allowed me to watch a little television, read the newspaper, do some needlework and other things to pass the time, and not feel completely useless or out of touch with the world. I owned my own business at the time of my surgeries. In between the two, there was time to catch up, as well as prepare for a little more time away. I believe it made things much easier for me and everyone around me.

[jansm]

in reply to: Hair loss #1170403

I experienced major hair loss during the initial onset of symptoms. Instead of RAI, my thyroid was removed surgically. I especially experienced loss of hair at that time. It took 5-6 months, as well as I remember, before it seemed to stabilize. Last year, I began to notice more loss during showering and shampooing. My lab results indicated a need for increased synthroid dosage. That seemed to alleviate the hair loss. I believe the cycle for hair to shed is actually longer than we realize. I would only be worried if your physician is, or your levels are questionable. If lab results and dosages are OK, it seems your hair loss will probably begin decreasing soon. It took awhile, but my hair seemed to bounce back and my stylist always comments on how thick it is.

[jansm]

in reply to: Eyes do not close-need all suggestions, especially for sleep #1170227

Have you tried tear duct plugs? My surgeon at Mayo in Minnesota inserted them shortly after my strabismus surgery. I did not realize how much they helped, until one came out. It took me awhile to figure out that was why my left eye was always dry and stinging. Once it was replaced by a local ophthamologist, I was so much more comfortable. I only have them in the two bottom tear ducts. I know one person who had them inserted in upper and lower tear ducts. He sometimes has to literally wipe tears away — but, it is better than the extreme dryness he was experiencing.
I also take fish oil and flaxseed oil supplements. I do think they help with dry eyes. There are now some vitamins on the market specifically for ocular health which contain these elements. As always, it is best to check with a physician to make sure they would not cause problems or reactions with other medications or situations.
If the eye dryness is not seriously harming your corneas, and your eyes would be OK without supplemental drops or gel during the night, is it possible to occasionally use something to just help you get a good night’s sleep? I do not even like taking aspirin, so I am usually the last person to suggest taking any medication. However, it must be extremely difficult to enjoy your days when your nights are so difficult and sleepless.

[jansm]

in reply to: Surgery-Post Op recovery times/return to sports #1061255

I underwent surgery about 23 months ago. The worst thing was a headache for 2 days, due to the position your neck/head is in during the actual surgery. I was eating normally the day after surgery, although swallowing was a little difficult. I was told not to drive for about 2 weeks, due to limited range of neck/head movement. I think that was the most difficult part. Each surgeon may have different opinions on driving restrictions after surgery.

Otherwise, I was back to fairly normal activities — although not playing soccer — within 5-7 days. I am older than your daughter, so she may bounce back evenly more quickly.

If the surgeon feels the timing is appropriate, that seems to be a good sign!

[jansm]

in reply to: Vision emergency symptoms? #1061294

I never experienced the steroid treatment. I was evidently past that point. I never saw a neuro ophthamologist, either. I cannot speak on those points. However, I do know my endocrinologist told me that if I had received the steroids, they would have been administered by the opthamologist. She would have helped in monitoring me, but the primary load would have been carried by the ophthamologist. Perhaps I am just fortunate, but my endo does seem to have a very good understanding of TED and always checked my eyes — even before the problems began. She did rely upon the radiologist’s interpretation of my MRI and CT scans. He was the one who was not alarmed at what he saw, and evidently had very little knowledge of TED.

I was referred directly to the oculo-facial surgeon. He, also, seemed to do mostly cosmetic surgery. While other patients in the waiting room were concerned about wrinkles and drooping eyelids, I would have gladly taken wrinkles and droopy skin. I was not pleased with some aspects of this surgeon’s practice or mannerisms, but he did seem very well versed in Graves disease and TED. Many of the tests and screenings that have been discussed here, were performed right in his office.

It did take 1-2 months to receive my appointment at Mayo. However, that was for treatment of worsened strabismus resulting from the OD surgeries. Receiving a second opinion for your situation, would be with a different physician and could be different timing. It is my understanding they normally require all of your records for review, before scheduling an appointment. That is why it is important for us to request and receive copies of our records. We then have them quickly at hand to forward wherever and whenever needed. It took probably 2 weeks just for my oculo-surgeon to forward the records they needed for review. My endo’s records were faxed within 24 hours.

As for being treated at a distance, I do not foresee that as a problem. Many of those clinics treat patients from all over the country and abroad. They are willing and able to correspond with local physicians and coordinate local follow-up when necessary. Or, that has been my experience. Having gone through OD surgery locally, and strabismus surgery 900 miles away, I cannot say that one was any different from the other. I remained in the hospital overnight for the OD surgery, and rested at home for several days before returning to the surgeon’s office. My surgeon even left the country on vacation approximately one week after my surgery. Following strabismus surgery, I remained in Rochester at a hotel for approximately 4 days before returning home. A follow-up was scheduled approximately 2 months later, and I will return for another later this year. I realize not everyone may have the time, resources or a willing husband like I do.

I do not know where you live, but there are other clinics, medical schools/teaching hospitals and institutions offering all-inclusive care. It just takes time and patience to sort through everything. I never even knew about this forum until I was very far in the process. Hopefully, you will find helpful information here, as well as other places. When it is happening to us, it seems that we may be the only ones with this disease. In reality, there are many and there are physicians who can help. We just have to be willing to do a little research and search for them.

[jansm]

in reply to: Vision emergency symptoms? #1061291

I am not sure my experience helps in the long run, but maybe it will at least make you feel slightly better about yesterday’s experiences and frustrations! I, too, had conflicting recommendations from my endo and ophthamologist. There were also conflicting interpretations of radiology reports between the two physicians. The endo seemed relieved by the reports, and the ophthamologist was alarmed by the same reports! At the end of the day, all of these physicians are humans. They have different opinions, different experiences and make mistakes — just like each of us. I know it is frustrating because we are paying them not to make mistakes, and entrusting them with our lives and vision. It still happens, though. Each of us, no doubt, have our own stories to tell.
Exactly one year ago, I was told that I would probably lose all or most of my vision within a few months. It had already taken almost 2 months to obtain an appointment with the ophthamologist. My husband and I were in complete shock. My thyroid had been surgically removed a year earlier. My eyes had ached a little and were dry, but had never bulged or shown other common TED symptoms. It was the aching and headaches that caused my endo to order the MRI and CT scans to rule out any other neurological problems.
Looking back, I wish that I had taken the time to get a second opinion. I wish I had sought treatment at an inclusive facility — one with all disciplines under one roof — instead of running all over a large city trying to get records and test results transferred and shared, and get physicians to communicate and cooperate. In the end, I survived — and that is the most important thing. After undergoing OD on both eyes, and strabismus surgery a few months later, I am now leading a fairly normal life again. I am grateful for each and every day that I open my eyes and can see. I will never take it for granted again. However, I do think it might have helped if I had taken the time to receive a second opinon and gather more information from various medical sources, before making my decision. I sometimes still have questions and doubts as to whether or not I did the right or best thing for me. The past year was very difficult. There were complications with my OD surgery. My husband and I both own businesses, and they suffered during the process. We probably had more time than we realized, and could have made better choices for everyone and everything involved.
So, if the endo and opthamologist indicated your situation is not an acute emergency, I would take a little more time to research and obtain a second opinon. I believe one of the most important things is to feel completely confident with your physician. It makes a world of difference. Just remember to take deep breaths along the way, and don’t forget to enjoy all the good things that life still has to offer.

[jansm]

in reply to: new here. confused on what to do! #1061301

I, too, had a rash from methimazole. It and the itching were so severe that I was switched to ptu. I do remember it altering my sense of taste. After taking ptu for only a couple of months, my liver function did begin to show signs of effect. It had already been determined I was heading for complete surgical removal of my thyroid. So, I did not remain on ptu for much longer after that. Unfortunately, I do not remember my dosage of ptu.
I can understand the concerns of being able to care for your children. However, the time of recovery from treatment is brief, compared to a lifetime of not feeling well or being able to enjoy all aspects of your life and theirs.
I agree that any decisions regarding prescriptions and treatment need to be made with your physician. Good luck!

[jansm]

in reply to: another newbie (subclinical hyper TED) #1061357

I completely understand the difficulties in finding a team of physicians to help, and getting them all to communicate — or at least transfer records and test results. I live in a very large metropolitan city, and thought it would be so easy to locate any type of medical treatment I would need. It was very frustrating when a physician would refer me elsewhere, but be slow or completely refuse to share or transfer all medical records to the fellow physicians they suggested. I soon learned to request copies of everything sent directly to me so that I could have them in hand to take to other physicians. My local endocrinologist, whom I love dearly, even encourages me to do so.

In retrospect, I would go to a facility with all disciplines under one roof if there is one convenient to you. I ended up traveling almost 1000 miles to have strabismus surgery at Mayo, since there were no physicians in my area willing to undertake my complex situation. What we learned there about my condition, confirmed the fact there were lapses in judgement and care due to lack of communication between local physicians. I cannot say enough wonderful things about Mayo, but also know there are many other all inclusive clinics and facilities. I researched several, but had more experience with Mayo due to other relatives’ and friends’ experiences there. I also found the physicians at Mayo willing to share information with my local physicians in the case I am unable to travel or need more immediate attention. Since such facilities deal with patients from all corners of the country and world, they seem more willing to coordinate and put the patients’ interests first, and not their own egos.

It was my eyes and an aching far back behind them that first appeared — long before any other symptoms. At the time, my normal opthamologist was booked for 3 months. So, in the interim, I went to an optometrist just for a quick check-up and to rule out anything serious. Big mistake. He informed me that it was just part of natural aging! Even looking at my chart and noticing that I was hypothyroid and on Synthroid, he never considered the possibility of a connection. Unfortunately, neither did I. I use my eyes a lot due to my hobby and work in needlearts. I could easily understand they might just be overused, but did not consider myself "aging" at 54. Before my appointment with my regular ophthamologist rolled around, we determined this was something much more serious and involved. I have now learned not to be afraid to ask questions, push for answers and search for the best treatment available no matter where it may take me.

[jansm]

in reply to: TED symptom relief? Hot phase #1061369

I don’t believe there is a magic cream to help with the swelling. The issues created with Graves and TED are completely different from those for which most cosmetic creams and lotions are formulated. I did always continue to use my eye creams, but mostly because it was one small way for me to try and continue with what was my normal routine and life. Maybe the creams you are using are contributing to some of the swelling and itching? I would try eliminating them for awhile and see if the problems improve. Some anti-wrinkle creams are designed to slough away skin. The creams may be doing what they were designed to do, but may not be the best choice in your situation.

I had problems with my left eye swelling more than my right. Several of my physicians suggested not sleeping on my left side. That was difficult, as that is my normal sleeping position. However, I did find the swelling was less in my left eye when I avoided sleeping on that side. I also found sleeping with my head elevated helped with overall swelling. I normally noticed the swelling mostly in the mornings. It slowly decreased during the day, when I was up and active.

Since undergoing orbital decompression and strabismus surgeries, I continue to have a little swelling in the mornings. It normally disappears after I am up for an hour or so.

Artificial tears and cool compresses were my best solutions when my eyes were really bothering me.

[jansm]

in reply to: Light Sensitivity and Pressure? #1061497

I had extreme sensitivity to light. Normally, I am an open the curtains and raise the shades kind of girl! Instead, I became a turn out the lights and don’t sit by the window kind of grump. One doctor told me my eyes were fine, and my problems were due to my increasing age — 55 years at the time.

My eyes never displayed any bulging or protruding, and I believe that is what misled some evaluations.
Following OD surgery last summer, the light sensitivity improved dramatically — at least for me. It evidently is not always the case for others. I can no longer wear my contacts, and changing from my glasses to my prescription sunglasses is sometimes a pain. I find that I can function outdoors, even now in bright summer sun, without much discomfort.. I still do try to wear my sunglasses as much as possible, though, simply to better protect my vision.

I tried the gel lubricant at night, and did not find it much more helpful than some of the stronger artificial tears. My strabismus surgeon inserted plugs in my tear ducts a few months ago, and that has helped. My eyes are still very dry, and artificial tears have simply become a way of life for me.

[jansm]

in reply to: Dallas Area Endo recc please! #1061857

I just happened to log onto the forum and saw these replies. I checked my inbox and did find the messages. However, I did not receive any type of "ping" or notification through my private email associated with this forum. I do not check the forum on a regular basis, but am glad I thought to do so today.
I have responded to sspann, and hope the message is received.
Thanks!

[jansm]

in reply to: Need some suggestions I have TED …. Help?? #1061665

I also underwent orbital decompression surgery in July 2010 to save my vision. My eyes never protruded, but the optic nerves were seriously compressed. Since my eyes were not bulging, they also seem more sunken than they once were. The sides of my face are also still somewhat numb, but I notice slight improvement each month. I think it just takes a very long time for everything to completely heal. I also have more congestion and sinus infections than previously. Growing up in the Texas panhandle, I understand completely about wind and blowing dust! I have been told this is fairly common following this surgery. Dry eyes are another common symptom. I use several different eye drops, all of which are over-the-counter and readily available. My doctor recommends Refresh Celluvisc.

I try to remind myself that all these things are minor inconveniences, compared to a life without vision — something that most definitely would have happened to me without the surgery.

Following the surgeries (each eye was done separately), the double vision was somewhat improved. It soon returned, and was worse than before. I was not a candidate for prisms. They would not have corrected the type of double vision I experienced. So, I cannot really speak to any problems you are experiencing with prisms.

I agree that you need to find a pediatric ophthamologist who also treats adults for strabismus. They do need to take many measurements and perform numerous vision tests for good surgical results.
I was informed that my condition was one of the most severe and complex my surgeon had seen, and he has been practicing in this field for 15 years. I underwent strabismus surgery last December. I had mostly single vision immediately after surgery. Depth perception has improved dramatically since surgery. I no longer run into the sides of the garage when exiting or entering! I do still have some double vision when I turn my head too quickly or when I am really tired. My only disappointment is not being able to resume wearing my contact lens. I do not know if it is true of all strabismus surgery patients, but my surgeon is not very encouraging about the prospect. I am slowly adjusting to wearing glasses all the time — just another inconvenience in my book! I could finally return to a more normal lifestyle, and noticed that some of the same symptoms you mentioned seemed to disappear. Stress of not being able to see correctly, and live normally, can really do a number on your whole sense of well being.

As others have said, I would also make sure that you are being seen by an endocrinologist who can address many of the symptoms, and hopefully refer you to ophthamologists more familiar with treating thyroid related issues.

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