[Robboford]

#1060361

Hi fellow Warriors,
Just wanted to touch base and let you know I am back. I have got heaps to update you on, so will take me a couple of days to get it all down on the forum. Hope you are all well, hi and welcome to the many new Graves’ warriors I see on here now. Take care, will update you all on my journey in the coming days.
Cheers
Deb
Robboford

[Raspberry]

#1182173

The suspense is killing me! I hope things are going okay by you

[Robboford]

#1182174

Hi all,
I will post my later experiences in posts to follow, but will go back to my TT in this post. As most of you will know, it took nearly 2 years for my labs to stabilise enough for the TT to go ahead. The main worry was going into Thyrotoxic Shock during surgery that we were hoping to avoid. Well, things don’t always go to plan, (I had 3 pre-surgery appointments to ensure that the risk was minimal). I checked in at the hospital at 7.00 am on the morning of surgery, I was prepared for Surgery and in Theatre by 7.30 am and was lying on the operating table waiting to be knocked out. I was then told that my Surgeon was delayed conducting another procedure and was introduced to my “new” Surgeon. Not the best of timing, although in hindsight the replacement Surgeon was fantastic, but still I had spent ages researching Surgeons and had based my choice on recommendations from both my Endo and Opthalmologist, at this stage though I didn’t get much of a chance to voice my concerns or questions and felt fairly vulnerable and somewhat disappointed. So, I finally woke up in recovery with ice bags on my neck and my chest and asked what time it was and was shocked to discover that it was 3.20pm. I stayed in recovery for about 1 1/2 hours and had a nurse constantly by my side taking observations every 15 minutes which I though was bit strange. I was finally wheeled back to the Ward and the Surgeon came to visit about 1/2 hour later. She informed me that I was one of the most challenging patients she had ever operated on. My thyroid and nodules was one of the biggest she had ever encountered and went almost to my ears, the Surgery in itself took 5 1/2 hours and during Surgery my Heart Rate and Blood Pressure elevated to worrying high levels and it was quite an effort to stablilise me. I asked what my Thyroid had looked like and whether there were any signs of any abnormalities or growths that she was concerned about. She said other than a large amount of blood (all through my journey everyone had remarked that I had a high rate of vascularity in my Thyroid, so this wasn’t a surprise), other than being very large, she said that the top parathyroids were fine and intact but that they couldn’t locate the lower ones and that the Thyroid seemed ok and that I would have to wait for pathology results for final confirmation. Overall I felt very groggy and disorientated but no real pain. My voice was quite hoarse, but because one of the Nurses I had seen at my pre-surgery appointment had a lot of experience with Thyroid Surgery she told me to move my neck and talk as much as I could which would ensure a faster and easier recovery. At 8.00 pm that night, I had eaten a bowl of clear broth, was swallowing ok and I was making tea and coffee for the 3 other patients, in my room and felt like I was Wonder Woman (lol). By 2.00am the next morning, I felt like I had been run over by a steamroller. I had trouble breathing and had very acute pains in my chest. More observations and then pain killers for the chest pains which the Nursing staff could not explain. The pain killers had no effect and I spent the rest of the night in severe pain (felt like I had a ton of bricks on my chest with no respite). I don’t think the Nurses took it all that seriously as all my observations were normal. The next morning when I had a wash, I was surprised to see the amount of bruising I had. My whole neck area to my ears and as low as my belly button was black and blue with bruising and was very tender to touch. The Surgeon and Endo both visited me and advised that due to the complications in Surgery and unexplained chest pain that i would stay in Hospital at least another night. During the course of the day, I had Blood taken every 6 hours, as they were now concerned about my calcium levels and was prescribed Calcium tablets. Due to my previous Thyroid induced heart problems, I was not allowed to lie flat and my bed had to be inclined at minimum 45 degrees and as was not used to that, resting or sleeping was virtually hopeless. On the plus side, my wound area was very swollen but looked fine. By the next morning I had had enough and just wanted to get home to my own bed and pleaded with the Endo to have me released so that I could try and rest at home. My voice was still quite hoarse and my brain was still really foggy, the chest pains weren’t constant (would come and go with no real pattern), so they relented as long as I promised to come straight back to Hospital if things worsened. I asked about the pathology results before I was discharged and they told me it was fine. The next 2 weeks passed in a bit of a haze, the anaesthetic really seemed to knock me about and I had still had the chest pains on and off, and also had an increased number of muscle cramps and aches. I still continued to take the calcium for another 6 weeks. At my next appointment with the Endo, (5 weeks after Surgery), he was happy with the way my scar was healing and other than a bit of roughness along the scar, I was also pretty happy. The Bruising had only subsided a week before this appointment and my voice still wasn’t 100% but was improving. My high range voice was still quite affected though and I was informed that this was a different muscle and would take a bit longer to recover. At that appointment i was also told that they had found a cancer spot in my Thryoid and that it appeared that it had all been removed and that they would monitor my blood test results (which they scheduled monthly) so they could pick up any changes fairly quickly. My levels while still not quite right were headed in the right direction (other than TRAB and the TPO antibody levels which were still really, really high). At this stage, my brain still seemed a bit scattered, the muscle cramps and aches were still fairly constant and of course the pretibial myxdema was still affecting my right shin and my left eye (right slightly but not as much as left) was deteriorating rapidly. The double vision was extreme and I was booked in to see the opthalmologist in early December (next posts will talk about the next chapter and the (now) ongoing battle with TED). As at today, my Calcium levels have finally stabilised, the blood tests are showing no changes in relation to the Cancer and my levels (other than antibodies which are still raging) continue to almost stablilse, my talking voice is back to normal, but high range and raised voice is still not working properly. I still feel as though my mind is not quite back to normal, but the Endo has told me that this is to be expected after the length and trauma of Surgery The muscle cramps and aches are still continuing and at the next Endo visit we are going to discuss and research Thyrotoxic myopathy. So hopefully, the Endo side of things will even out. The eye issues are another chapter and i am currently recovering (slowly) from radiation treatments so more to follow on that journey in the next few days ……..
Take care all, and I hope to catch up with everyone’s posts and reading our new member’s stories and also update you on my TED journey over the coming days.
Cheers
Robboford

[snelsen]

#1182175

good grief, Robboford!
What a stressful and traumatic experience! I am so glad you are on the other end of it now, and about darn time. Did the pathology tell you if the other two parathyroids were removed?

It must have been a huge shock to hear that you were going to have another surgeon minutes before your surgery.

Just wondering. Did you take KI (potassium iodine) drops 7-10 days before the procedure? I believe that is part of the STandard of Care here, and as I recall, you are in Great Britain? The purpose is to reduce the vascularity of the thyroid gland.

Thinking of you, I have had lots of experience with TED and the procedures I think double vision was the worst thing that I experiences. I am used to being light sensitive, having dry eyes, and much more. But I can SEE and I can DRIVE.

The very best to you, so good to hear from you.
Welcome back
Shirley

[Raspberry]

#1182176

Wow you have been through it Deb! You are a true Graves Warrior indeed. At least now that your thyroid is out you know you’ll never have to have it out again…is that a comfort? Is the radiation you are recovering from for thyroid cancer or that treatment they do for the TED? I hope your recovery gets smoother from here on out!

[De]

#1182177

This is my first ever post to any kind of forum. I feel I need to give some history of my condition so here it goes.
Diagnosed with graves August, 2011. Rai done September,2011. Started Levothyroxine, took a few months to get correct dose . Did fine until May, 2013. I complained to my Endo about my vision not being as good as I would like. Referred me to ophthalmologist,was told my vision was not related to graves or thyroid. Said I had bilateral cataracts and had cataract surgery done in July and other eye in September of 2013. Well since last fall I have had nothing but eye problems. Went to a general ophthalmologist in October and he diagnosed me with iritis and dry eyes and put me back on steroid eye drops. I asked him if this had anything to do with my graves or thyroid and he said NO. I was not improving so made appointment to be seen by another ophthalmologist. He changed my prescription to lotomax and I was rechecked again in four weeks. Both MD’s blew me off regarding that my vision problems were caused by my thyroid condition. Symptoms progressed so I contacted University of Minnesota (my cataract surgeon) and a ophthalmologist tech spoke with me and said she wanted to get my records and call me back. She called and said she had checked with my MD and a couple residents. Said my symptoms were probably thyroid related. Flew to Minneapolis diagnosed with TED and had tests done, Ct scan, color test, and visual fields showed optic nerve involvement and put on a high dose of prednisone and had urgent orbital decompression surgery in January and more extensive decompression done 11 days ago. Still not out of the woods , vision very fuzzy, worse in left eye, cheek, nose, upper lip/teeth numbness, facial swelling and constant headaches. Are these normal post-op symptoms? I have many questions but don’t know if anyone will read this post or not. Its been a tough few months but I can see I am not alone.

[Kimberly]

#1182178

@Deb – Thanks for checking back in and sharing your experience. How frustrating to have done all that research and then have a last-minute surgeon switch! So sorry for the stressful experience…and then having to go through eye issues after all that! Definitely keep us posted!

[Kimberly]

#1182179

@De – Hello and welcome! I would definitely follow up with your surgical team on these questions…they should have given you information on post-op care and issues to watch out for. I do know that numbness, bruising and swelling are common following OD surgery.

We do have several posters here who have been through OD, so hopefully, they will also chime in here. You might also start a brand new post with a title that is specific to Orbital Decompression. (You can find instructions for starting a new post in the “First Time Posting? Read This First!” thread in the announcements section of the forum). Some contributors on this forum will read every single thread, while others will only jump in on specific topics where they have personal experience.

Wishing you all the best!

[SueAndHerZoo]

#1182180

Welcome back, Deb… so sorry you’ve been through hell. I guess now is the time to remember that as with anything thyroid related, PATIENCE is the key (was pretty much a mantra for me while going through my thyroid experiences). I know you’ve been suffering for a long time so the reminder to be patient might justifiably p/ss you off, but try to remember that the worst is behind you and it’s only going to keep getting better from now on.

You WILL have a normal life again, or maybe even better than “normal”. I’m still not at my ideal level (surgery was July 16) but I’m darned close and a bad day lately is much, much better than a good day was before TT.

Sending positive energy and healing thoughts your way.
Sue

[De]

#1182181

Thank you for the follow-up Kimberly.

[De]

#1182182

Thank you for the follow-up Kimberly.

[Robboford]

#1182183

Hi all,
Well, what an eventful past couple of months, the journey continues and to be honest I have found this part of the journey to be the most challenging. I continue to suffer from the after affects of the Radiation. The tiredness I feel by about 3.00pm every afternoon has been quite confronting. I have always been a go getter and a glass half full type of person. In the past I have pushed myself to remain positive and to fight to remain up beat and try and maintain a “normal” life. It has been very hard to accept that my body just isn’t working at it’s full capacity and no amount of me telling myself I am Wonder Woman and can do anything, my body is just not co-operating. I saw the ophthalmologist on Monday and he is hopeful that the Radiation has stopped any further deterioration of my eyesight, but the Double Vision continues in earnest and now my right eye is showing signs of TED. Hopefully though, the right eye has stabilised and won’t get any worse although as I keep being reminded things change. (Tell me something I don’t know already – lol). My antibodies are still raging and are not showing any signs of lowering so for now, any chance of Surgery to correct the Double Vision is at least 6 or 12 months away. I am now only driving to work and back (as it is a route I have taken for the last 27 years), I am not driving in peak hour, at night time or when it is raining. The ophthalmologist has told me prisms will not work, patching one eye is not an option and to try and deal with it the best I can. he has now prescribed pain killing eye drops as well as I am experiencing quite a bit of pain around my eyes and also sometimes my temples still fill feel like they have been drilled and I have had a part of my skull removed. The Oncologist has said that this is probably from the Radiation and will diminish in time. it would seem that my body was quite sensitive to the radiation in comparison to to other patients and I have been unfortunate to have some of the side effects that they didn’t think would happen. My appetite has diminished severely (although this started after my TT) and most days I will only eat a sandwich and sometimes even have to force that in, just so that hubby is happy that I have eaten something. Insomnia is another issue but I have always been a bad sleeper for as long as I can remember. The muscle aches, pains and cramps haven’t diminished, just a part of everyday life for me now. Of course with the antibodies still raging, the pretibial myxdema is also still an issue but I keep saying to myself that whatever doesn’t kill you makes you stronger and my new self motto is “Suck it up Buttercup” but wow it is hard to maintain and radiate a positive attitude. Went to Endo last week and he is quite surprised that my weight hasn’t dropped with the meagre amount of food that I am eating, but really that is the least of my worries at the moment. At that visit my blood pressure, heart rate and temperature were elevated, together with T4 being high, but we agreed to stay with current dosing in order for me to get over the Radiation and hopefully stabilise and will readdress in 3 months. I have now also been diagnosed with Bells Paulsy (another of those auto immune conditions) on the left side of my face which hopefully won’t get worse (I have had 2 flare ups with my face and neck swelling badly but it did settle in a couple of days so at this stage we will just monitor it and report back at my next visit), but as we all know there are no guarantees on this journey. Sorry to sound like a sad sack, seems like a huge whinge, but I am thankful for my life even with all the woes, life is for living and there are so many people worse off than me, that things will get better for me – just don’t know how long it will take. Will try and get back to my regular presence on here and if there is 1 piece of advice I can pass on to the newbies it is to keep a journal or diary of your personal day to day life and just a short note on any symptoms you may have or how you are feeling that day has been really beneficial. My doctors have found it be invaluable. Keep fighting all and hang in there – good things come to those who wait! (We just don’t know how long we have to wait – lol).
Cheers, hugs and kisses,
Deb
A.K.A. Robbford

[snelsen]

#1182184

Hi Debra, I am JUST walking out the door,home tomorrow. So glad you wrote. What a tough time you have had! i have just one question or suggestion right now. I wonder if a 2nd opinion from a neuro ophthalmologist, or even another eye doc who is VERY FAMILIAR WITH TED, might be helpful for you.
Regarding wearing a patch, if you have mono vision if you cover one eye, a patch WILL help. Some people have one lens of their glasses fogged over temporarily. 2nd question is I would ask WHY he/she says prisms would not help. They helped me a LOT when I was in the active phase with terrible double vision, the only way i had single vision was to look down at the floor. It is so so demoralizing.

I am also suggesting to you that antibodies are not really the measurement on when to proceed with surgical correction for TED. TED has its’ phases, active or hot phase, and the cold phase. It varies, but the way I could tell,and my multiple eye docs knew, was when my eyes were not continuing to change anymore. I did not have radiation on my eyes, it is controversial, with some docs doing it, some docs not doing it. My doc was not in favor of it. All during TED, I saw a neuro/eye doc regularly, and a pediatric eye doc, many eye tests, for color and visual fields. YOu want to be sure you do not begin to lose vision and have optic neuropathy. I did and so had surgery in the active phase to save my vision in my right eyel
Gotta go, more tomorrow.
Glad you wrote, SO SORRY you have had a really crappy time with this.
Shirley

[Kimberly]

#1182185

Hi Deb – Thanks for the update…so sorry to hear that you are dealing with every complication that Graves’ can throw at you.

I had the same question as Shirley in reading your post as to why the eye doc told you that prisms and patching wouldn’t work. Some patients don’t do well with prisms if their vision is *constantly* changing, but for many people, prisms can really improve quality of life until surgery is an option. And patching is simple – you can try it yourself to see if it brings some relief.

Hoping that all of this will be behind you soon and you can get back to enjoying life!

[LaurelM]

#1182186

Hi Deb,

Wow, you have had a rough road. I don’t think you are whinging at all. When it has been so difficult for so long, even the most positive outlooks can take a hit. This is good place to vent. I hope things will start to improve for ypu very soon.

Laurel.

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