[Jules February 23, 2012 at 3:03 pm Post count: 85]

#1058871

Hello everyone. Just had OD Tuesday. Everything considered it went great. It was a three hour surgery, with an over night observation hospital stay. I recommend this stay if your dr can get it approved. Just for the bed, Meds and Ice packs. Bring a set of head phones and your iPod and just get through the 1st 24 hours. The rest is a cake walk.

I was totally freaking my self out prior to surgery. But m I glad I went through with it. Yes I have the stitches and swelling to be expected. Want to blow my nose but can for about 2 weeks. I can tell by the daily pictures that the eye is 5 mm sunken back in to my skull, and the swelling is just the surgical swelling to be expected. The black blobs in my vision are gone. The floaters are there only slightly.

I love my neuro opth. He is a navy retired neuro opth with plactic surgey specialist. he did the eye lids upper and lower are the sme time of my OD. I had way too much fatty tissue and muscle in both lids that it was a neede procedure to make sure that the eye would sit properly. The area of decompression was on the lower orbit and the sinus area.

I will stop by in a few days and update. I have pre and post pictures if anyone wants to see them.

If you are told to save your sight you need OD. Don’t sweat it as long as I did. I think thisis the best decission so far in my battle with graves disease.

[snelsen February 23, 2012 at 9:23 pm Post count: 1909]

#1170524

awesome! I understand! (Look at my history at bottom of this post.) I am on my way to bed. In my experience, be darn sure to keep your head of bed elevated, and the ice packs are your best friend along with the elevated head. Well worth the poor sleeps if that is what you have to endure for a week.
Shirley

[KimberlyOnline Facilitator February 24, 2012 at 8:37 am Post count: 4294]

#1170525

Thanks for sharing your success story! By the way, you might be interested to know that the organizer of the 2011 “Greater Than Graves'” bike ride recently had OD and has been documenting her experiences on her blog:

http://www.greaterthangraves.com/Blog_2011.html

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

Take care!

[Jules March 3, 2012 at 10:24 am Post count: 85]

#1170526

Anyone experience a headache and sinus infection after OD? I ended up with a sinus infection after my OD. Currently on antibiotics the question I have is I do not know if the headache I have is from surgery 2 weeks ago or from the sinus infection.

Also the blood clots how long did it take for you to have them clear out?

[Jules March 3, 2012 at 10:24 am Post count: 85]

#1170527

Anyone experience a headache and sinus infection after OD? I ended up with a sinus infection after my OD. Currently on antibiotics the question I have is I do not know if the headache I have is from surgery 2 weeks ago or from the sinus infection.

Also the blood clots how long did it take for you to have them clear out?

[Jules May 7, 2012 at 1:44 pm Post count: 85]

#1170528

Ok so to update

I thought my eye surgery was a success…

But I do have a complication CSF RHINORRHEA (crack in the cribiform plate causing csf leak) ugh will post more info tonight about Anya happens next and how I discovered it.

[snelsen May 7, 2012 at 8:36 pm Post count: 1909]

#1170529

Oh darn. I am so sorry. You’ll be learning more from your surgeon soon. I think one thing you might be told is that they can resolve on their own, it takes a while.
I have had several complications in my 9 procedures in the past two years. Yes, I count each eye as one surgery!
Shirley-do write again with an update when you have one.

[Jules May 7, 2012 at 9:54 pm Post count: 85]

#1170530

Oh so I had the eye surgery, after waking up I had a headache and the lose of smell, I was told no worries that happens and can be expected. After being checked out of the hospital the day after surgery I went home for my revocery. I thought I had a sinus infection so they put me on antibiotics.After the blood clot cleard at around 2-3 weeks after surgery I had a foul smell I thought ok sinus infection is not gone and the watery drip I noticed must be from the infection. The drip only happened when I bent over (this is a key sign, but I did not know what the signs are for a csf leak) No biggie I’ve had infections in the sinus need a different type of antibiotic to clear it up.

After 3 weeks and stared the second antibiotics I went to my ENT. he said oh yea well let’s see what happens with the antibiotics. That next week I was calling my Neuro opth that did the surgery leaving messages for him that something is not right the headache seems to be getting worse. His nurse said she left him his messages but he never called. By Friday night I had a thunderclap headache worst one yet and felt nauseous and the drip was worse not all the time but there.

I called the doc on Saturday (I had his cell number for emergancies) I called his cell phone stating sorry to bug him but I left messages everyday for the past 4-5 days and had not heard from him and I was concerned with the headache. He sad e never got the messages ehich i do believe him on this from past experances with his front office. He sent a request for a ct scan we found a place on that Saturday that could take me in.

The radiologist thought she saw a breach from the sinus into the brain vault at the cribiform plate. There was also a frontal sinus infection. This took until Thursday to get this back because the radiologist was verifying with others as to what se thought she saw. Ok MRI with contrast that next Saturday. Again it took until thursaday to get the report and it stated the surgery but nothing with the breach InTo the brain vault.

I called my ENT and he looked at the ct after the first report then I called him after the MRI and he said oh no you have a breach that was not reported in the radiologist report. He contacted my neuro opth and he contacted a neurosurgeon. Great guy said ok so has anyone showed you what we are discussing? I said I looked at the CD copy I had, I said I thought I saw a breach with stuff hanging in my sinus. I point to what I saw and he said very good. Now let’s figure out what we are going to do about it.

I am fighting with insurance right now trying to go to one of the top docs in the endo nasal surgery. There is issues getting the referral and the top doc does not take cash I’m desperate I want to know what we are going to do the headaches a pre getting worse and the vision is really strange double Visio that comes and goes with the headache. I have time there is no double vision and then times where I can not focus at all. I was told be the neuro opth after the surgery the double vision is a complication of surgery but now I think it is from the csf leak.

So as of last Friday the top doc won’t see me my neurosurgeon was on vacation, the neuro opth and my ENT both informed me this might not be fixable with the nasal approach and I might have to have open head surgery (crainiotomy).

I’m scared to death and I will be searching the USA for a doc that can do this repair endoscopically.

I’m not trying to scare anybody from getting an orbital decompression but I think you should know that there is a possibility of a csf leak. It happens when the middle turbinate bone is pushed during surgery and it cracks the cribiform plate.

I have done tones of research on line and could not find any info on this from orbital decompression, just that there is a slight risk.

I’ll update once I know what happens next.

[catstuart7 May 7, 2012 at 10:58 pm Post count: 225]

#1170531

Sending prayers for you Jules to find the very best doc and that your insurance will cover him so that everything can get better as soon as possible for you.

[Bobbi May 8, 2012 at 3:23 am Post count: 1324]

#1170532

How awful, Jules. Sending hugs, however inadequate those might be.

[snelsen May 8, 2012 at 6:43 am Post count: 1909]

#1170533

Hi, do keep writing. Super sorry. Hope insurance, doctor and plan soon begint to take place.
Shirley

[KimberlyOnline Facilitator May 8, 2012 at 9:37 am Post count: 4294]

#1170534

Jules – Thanks so much for sharing your story. This appears to be a very rare complication, although I did find one abstract from a journal article that mentions this issue.

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

http://www.ncbi.nlm.nih.gov/pubmed/15377900

Hopefully, you will stop getting the runaround with your insurance and will be able to move forward and get this addressed. Wishing you all the best.

[Jules July 16, 2012 at 6:34 pm Post count: 85]

#1170535

Sorry it has taken me so long to update my complications. I have been through the ringer for the past few months, finding a surgeon and dealing with insurance approvals.

I ended up having a bi-frontal craniotomy May 31st. If you want all of the details about my situation you can read my blog

Mycsfleak.wordpress.com

Hope everyone is well.

[catstuart7 July 17, 2012 at 3:04 am Post count: 225]

#1170536

Hi Jules, I’ve thought about you often since you last post wondering how you were. I’ll check out your blog and see what happened. Wishing you a speedy and full recovery!

ETA: The link needs a slight correction to wordpress otherwise redirects to a survey.

[catstuart7 July 17, 2012 at 3:56 am Post count: 225]

#1170537

Just read the whole blog, dear God Jules you have been through so much. You have my prayers and wishes that every single doctor and medical professional you encounter be incredibly good at their jobs and perform at their absolute best. I am amazed that after all of this – if I read it right – you are packing up your house to do a move? You are made of some very strong stuff.

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