[laurafree]

in reply to: orbital decompression surgery #1182247

Hi SNelsen,
My sentiments exactly – best place for recovery is my own home, in my own city (Tucson), own bed, own germs, own refridgerator (for ice packs) – no brainer to me. I have been told that the surgery center will keep me longer than one day if there is medical necessity and trust them to do that. Apparently 2 or 3 days used to be the norm. This OD surgery should take care of my severe proptosis, which, in addition to being quite disfiguring, also poses an ongoing threat to my optic nerves and my corneas. No one has looked at my optic nerves for a while. Miraculously I can still see pretty well with my right eye. Left is sewn shut. Reading is challenging but I do it.

Meanwhile I have been reading the Forum thread about puffy eyelids and under eye bags, both of which I have big time, and thinking about the 3 additional surgeries I have ahead of me. The next one will be strabismus surgery, also in Phx, maybe 3 months after OD. This is a pressing problem because my diplopia is so severe I have to block one lens of my glasses to be able to function. I have been living with sight in only one eye for over a year now and am getting real tired of it. My left eyelids were sewn together (a tarsorrhaphy) to prevent exposure keratitis (and severe pain) from dry eye. After a year the lids have grown together in places, which is a good thing but it’s not a pretty sight. The lids will be opened during the orbital decompression surgery, but I will still have to block that eye anyway until I am able to have strabismus surgery. I will probably need prisims in my glasses as well as strabismus surgery to see one image. So after OD and the other surgeries, hopefully my eyeballs will fit in their sockets and I will be able to sleep on my side again, I will see one image with two eyes, my eyelids will close completely and cover my eyes, the unsightly fat deposits will be removed and I can get on with my life. After the first 3 surgeries, I am not sure I will be up for the last one, fat deposits, which would be the fourth surgery and is considered cosmetic. It will depend on my disease, which is still in the hot phase and how the other surgeries go.

I am doing okay with all this – slogging through it. It’s like a job. I have seen 8 eye doctors in two cities in a year. They all specialize. None seems to be coordinating my care. This is a big concern of mine because I am quite ignorant. Apparently the severity of my condition is rare. Looking back, I am sure my father had severe proptosis, but it was undiagnosed. He suffered terribly with no medical support, plus he smoked a lot which made it worse. I am luckier because of when I was born and I have never smoked. My mother was afraid to see doctors – she had a goiter and a problem but I am not sure what it was..

Laura

I am wondering how to include a little case summary at the end of my posts as some other people do? I will look into that soon. Don’t want to have to retype it each time. It will include the following:

TED (severe proptosis) and Graves Disease since 8/2012
Tarsorrhaphy, left eye, Jan. 2013
Methimazole 20 mg/day 2/2013 to 3/2013
Orbital Radiation, 2/2013 to 3/2013
Thyroidectomy, 3/2013
Prednisone, very high dose, 2/2013 to 2/2014
Synthroid .88 mcg/day, 3/2013 to present

[laurafree]

in reply to: orbital decompression surgery #1182244

Hi gatorgirl,
I am thoroughly confused about the details of the surgery, but it will all fall into place (literally and figuratively) eventually. Two friends suggested I stay in a hotel in Phx for two additional days after my one day in the hospital before coming back to Tucson, so today I called the doctor’s office. They said many people do that – stay in a hotel but I am afraid of infection. Hotels are not clean.
I would prefer to drive home but will consider alternatives.
Laura

[laurafree]

in reply to: orbital decompression surgery #1182243

Hi gatorgirl,
I am thoroughly confused about the details of the surgery, but it will all fall into place (literally and figuratively) eventually. Two friends suggested I stay in a hotel in Phx for two additional days after my one day in the hospital before coming back to Tucson, so today I called the doctor’s office. They said many people do that – stay in a hotel but I am afraid of infection. Hotels are not clean.
I would prefer to drive home but will consider alternatives.
Laura

[laurafree]

in reply to: orbital decompression surgery #1182242

cel wrote:

I had orbital decompressions on both eyes in 2007, before I lost all medical coverage. I am glad my daughter insisted I do this; other than the prednisone fat pads in my cheeks, I almost look normal. The doctor who treated me said I was the worst case he’d seen. What a blessing those surgeries were.

Your doctor will give you a scrip for pain meds–my best suggestion is to fill the scrip and have the person helping you (your ride home) bring them so you can take them as soon as possible–before you leave the hospital.
Also, your eyes will be so sensitive to light that you need to wrap them when you leave the hospital. I suggest a couple of big black towels.
Cel

Hi Cel,
Thanks for your suggestion. The car ride home from Phx to Tucson the day after surgery will require a black towel, and I have one and we will fill the script before we leave the surgery center.
Laura

[laurafree]

in reply to: orbital decompression surgery #1182239

Hi Gatorgirl,
Unlike yours, my surgery will not involve removing any fat according to the surgeon, which I hope might mean less pain. I think he said I will be having lateral walls and 2 pieces of orbit floor bones removed on each eye, with incisions in two corners of each eye and under the lower lids. Nothing was in writing and the message was complex so I don’t recall exactly. I have confidence in this doc (McLeish) because he seems very knowledgeable, is very experienced and seems to be the go to person in the SW for this procedure as far as I understand. Plus he has a very reassuring manner. I am optimistic.

One important thing is that I am finally completely off high dose steroids, after a year, so my immune system should be more ready to handle the onslaught. It will be 7 weeks since I stopped taking steroids on the date of surgery. I waited. The unfortunate thing is that a few months ago I was diagnosed with diabetes, type II, which I attribute to the steroids, but it is not going away…..

After the surgery, when I am able, I will post to the Forum regarding my experience and the outcome.

Laura

[laurafree]

in reply to: orbital decompression surgery #1182237

gatorgirly wrote:

I had bilateral orbital decompression in September 2012 and followed all of Shirley’s advice. I also found that putting jersey or flannel sheets on my bed helped me not slide down with the head raised so much – cotton or silk sheets didn’t work while the bed was elevated. I also made myself a pillow fort so that I could sleep as comfortably as possible without accidentally rolling over (I’m a side sleeper but had to sleep on my back for the first week).

I had a much different experience from Shirley. I don’t tolerate anesthesia well, so I was psychically sick for the first 48 hours. Then, the pain was almost unbearable so I was taking the maximum percocet dose which almost made my stomach a wreck. Basically it was a miserable two weeks spent in bed. I felt well enough to go back to work part time in week three, and finally back to full time in week four, by which time my bruises finally healed. Also, one of my eyes was patched shut for the first 48 hours and that probably contributed to the nausea – throwing off my balance and vision and all that. But otherwise, my vision was not affected whatsoever by the surgery. I put my contacts back in after week three.

I don’t regret any of it, but it wasn’t a walk in the park. My eyes required a LOT of work and therefore it was a long, slow recovery process but I forget about it almost every single day now that I look like my old self.

The only hiccup was a bit of permanent nerve damage – I have no feeling in my right upper gums, lip, nostril and the part of my cheek from my mouth to just below my eye. It’s OK – just weird.

I posted about my surgery in my personal blog and would be happy to PM you the link if you’re interested.

Let me know if you have any other questions! Good luck – you’re going to love your eyes afterward.

Hi gatorgirly,
Thanks for sharing your story. I do have flannel sheets, which I will use. I have had to sleep on my back for a year and a half now (when I developed TED) because of severe eye protrusion. Side sleeping is just too painful. The surgeon says I may be able to sleep on my side again three weeks after surgery. Hooray. My sleep apnea mouth splint does not work when I sleep on my back, causing me to wake up many times a night.

It’s interesting that one person responding to my post had no pain and you had a lot. So glad you are pleased with the results. I would like to read the post from your blog but don’t know what “PM” means. Please send it.
Laura

[laurafree]

in reply to: orbital decompression surgery #1182235

npatterson wrote:

Another way to elevate your head is to put wooden, or even concrete blocks under the head of your bed. I didn’t get all the way to 45 degrees, but you DO need elevation. Also, don’t wear slippery pajamas–you will slide to the bottom of the bed.

I had a couple of “Dog-Bone” pillows that helped immobilize my head.

I lived in my recliner for a week.

A soft, calm cat, purring in your lap, is extra comforting and calming.

Take care,

Nancy

Thanks Nancy. I will try to find some Dog-Bone pillows online. I have seen them.
I’ll skip the cat though – allergic. I have two recliners and an adjustable bed.
Laura

[laurafree]

in reply to: orbital decompression surgery #1182234

laurafree wrote:

I will be having orbital decompression surgery 3/27/14 in Phx. What will I need afterwards? Thanks.
Laura

Hi Shirley,
Thanks so much for your helpful suggestions. I will follow up. My friend will be with me for a week, three days of it in Phoenix. I will lay in a supply of gauze sponges and elevate the head of my bed on bricks (one or two). My surgery will be in Phoenix, 110 miles from Tucson where I live. I will be in the surgery center for 12 to 24 hours and then must face a two hour car ride back home. That is a scary thought. You were fortunate in not having any pain!
Laura

[Author]

Posts