[laurafree]

#1060368

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

[snelsen]

#1182230

Look me (nelson) up in the Search Posts section. Also look up orbital decompression

Here are my thought on what you need….
1. Help for a week, someone there with you all the time for the first 3-4 days.
To prepare your meals, to change cool/cold pack applications (I used 2×2 and 4×4 gauze sponges, sitting in ice water. Cool packs on YOU, not ice packs.
To field phone calls and/or visitors.

**2. ****Head of bed elevated at least 45 degrees. I found it much better to put blankets, pillows, anything like that UNDER THE MATTRESS, all the way across the bed. Then use whatever you re used to under your head.
Having your head elevated will reduce any potential swelling. Having your head flat, will probably result in quite a bit of swelling.

3. I went for a walk around the block the 3rd day. On the 2nd day, I felt like doing that, but after getting dressed, I changed my mind.

4. I did not have pain at all, just general discomfort. Be prepared for not getting a good sleep. It is hard to maintain the 45 degree+ head position all the time, but well worth it.

Maybe this will give you some fodder to follow up with questions you may have.

Shirley

[npatterson]

#1182231

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

[gatorgirly]

#1182232

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.

[cel]

#1182233

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

[laurafree]

#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

[laurafree]

#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

[connypie]

#1182236

sorry to be such an airhead, but how the heck do you post a post? connypie

[laurafree]

#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

[gatorgirly]

#1182238

PM = private message. Just click “PM” underneath the username and it lets you send a private message. I’ll send you the link now

I think your surgeon is spot on about the 3-week mark for side-sleeping.

Everyone is different. I normally have a very high pain threshold – I was a gymnast and cheerleader and was always training on major injuries through the pain. But my eyes were a whole new ballgame. It also depends what approach they use. For me, I had the lateral walls (bones up against the nose), orbit floor (bones below the eyeballs), and orbital fat (fat from behind my eyes) removed. That’s intense. To get to the lateral walls, they went up my nostrils (no scars). To get to the orbit floor, they went through my bottom eyelid with the incisions through the fleshy part below the eyes (no scars). To get to the fat behind my eyes, they went through my upper eyelids (scars but hardly noticeable within a few weeks).

As for the paid meds, the nurses told me to take the maximum dose out of the starting gate, and then to take my next dose on schedule rather than waiting for the pain to become unbearable. Slowly, I was able to take 1 pill versus 2, and then I was able to take them 6-8 hours apart instead of every 4, then I could sleep through the night without a dose, and so on until I switched to straight over-the-counter Tylenol (ibuprofen made the bleeding worse).

I hope you’re lucky and don’t need any pain meds at all, but you’re not weak or unhealthy if you need them. This is major surgery – not some cosmetic procedure!

[laurafree]

#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

[gatorgirly]

#1182240

Interesting – didn’t know there was a link between steroids and type 2 diabetes. I went back on a very low dose of the steroids immediately after my surgery and for a full week after (maybe two, I forget). It was just to keep the inflammation down since I couldn’t take ibuprofen.

Your surgeon sounds great but I would ask in your pre-op for a full rundown of the procedure. You can take notes as he talks. And you’ll find that his surgical coordinator and the post-op nurses will have a lot of advice for an easy recovery, moreso than he will.

I just noticed you mentioned the two-hour car ride home. Hopefully you’ll be so medicated that you sleep through most of it. I become a very angry person with anesthesia, and I went into a full-on rage when my dad hit a pothole because the jolt caused all my bandages to move. Otherwise being in the car wasn’t so bad except that I wanted to sleep but my nose kept bleeding, so I had to sit perfectly straight up.

You are right – I had the medial walls removed, not the lateral walls. Silly me! Medial walls are the ones along your nose, lateral are outside the eyes and I was told they go through your “crow’s feet.” Since I was only 26, my surgeon felt giving me scars where I didn’t yet have wrinkles wouldn’t be worth it and he was right – removing the medial, floor and fat made my eyes exactly as they were before TED. But given how well my eyelid scars faded, the lateral ones probably would’ve, too.

It was a full week before I felt well enough to stare at a screen and write about my experience. And then I could only handle it for short periods of time, but I can’t wait to hear about how it goes for you!

[Kimberly]

#1182241

@connypie – This thread should have the all info that you need. Any questions, let us know!

(Note on links: if you click directly on the following link, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://gdatf.org/forum/topic/42254/

[laurafree]

#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]

#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

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