Has anyone had a Vitrectomy? (spelling?)
Bear with my typo's, I just got home from my retina specialist and am dilated.
The MTX is not working so I have two choices. I can go on CellCept if my Rheumy feels my body can handle it or he talked about a Vitrectomy. He told me all the risks of having it done and frankly I am scared. My left eye is shot, vision is 20/200, but it is my right eye that is flaring, I read one letter from the 20/25 line today. He said vision loss is a risk and I am not sure I want to take that risk since it is my only seeing eye. Plus there is no guarantee that this surgery will take care of the cells. He told me to go home and think about it and meanwhile go to my Rheumy next week about going on the CellCept.
I am so afraid and starting to feel like there is no hope.
Do I take the CellCept and hope for the best or have the surgery and pray I don't lose my sight? I feel like I am in a no win situation here.
I'm sorry, I can't talk about either of these options, as I've had neither. But many people on this board have had successful vitrectomies, and many have had success with Cellcept. I'm sure some of them will weigh on on their experiences.
Have you seen Dr. Foster? At this juncture, if you haven't it might be worth a trip to see him, or one of the other uveitis specialists he's trained. I know I'm very glad and grateful I saw Dr. Chu.
Try not to be too afraid; many people here have gotten to a cure and maintain a good quality of life; you can too.
Re: Has anyone had a Vitrectomy? (spelling?)
Kristy,
I haven't had a vitrectomy; but, MANY of those who have pars planitis have had it done and it has stopped their inflammation. Many of the kids who's parent's have posted have also had it done - sometimes more than once. (Renee's daughet Alexa for example with final outcome along with Immunomodulation being very good vision)
It is impossible for us to say what is right for you as only your doctors can counsel you on what is appropriate. or, another evaluation with someone like Dr Foster might ease your mind and indicate what drugs or surgeries are appropriate for YOU.
I hope that some of our members will relate their experiences with this. on the Treatment Algorith for Pars Planitis, vitrectomy with either endolaser to seal off the pars plana or cryotherapy to freeze the area with the exudate is used. this lessens the inflammatory cells in the eye and prevents additional exudate from forming along the pars plana.
often a combination of drugs is needed to stop pars planitis. sometimes Methotrexate is combined with cyclosporine for example or a biological like Remicade is added to either MTX or Cellcept. other classes of drugs are being used too like Serolimus (see my post in the learing about OID forum). one of our members is going to start this trial soon.
there is hope at the end of the tunnel. in some cases the journey can be very frustrating but in the end most end up with very good vision (better than 20/40). Renee's daughter went to 20/200 many times and today sees better than 20/30 off all drugs but Xibrom to make sure Cystoid Macular Edema doesn't return.
Re: Has anyone had a Vitrectomy? (spelling?)
Hi Kristy,
Sorry you are in this situation. I agree with Beverly and Mike's suggestion to see Dr. Foster if you can, or another ophthalmologist who has had training in ocular immunology. Not all ophthalmologists have this specialized training.
Re: Has anyone had a Vitrectomy? (spelling?)
Kristy,
What an agonising decision to make. I've had vitrectomies in both my eyes, but neither cured the inflammation problem-I have pan uveitis. The intermediate and posterior inflammation stopped though and I've only had anterior inflammation since then.
Since I also had cataracts removed with the vitrectomies, it's hard to say which procedure resulted in the further macular edema in one eye. That was treated with anti vegf injections and remicade. I certainly didn't lose permanant further sight with either of the ops. I think vitrectomy alone can lead to cataract formation. Someone will correct that, if I've remembered wrongly.
If you have masses of floaters and debris obscuring sight in your better eye, a vitrectomy will clear it. Getting rid of that did me a power of good mentally.
In your shoes, I'd be hesitant to have the op before effective IMT is in place. I don't know the expert's opinion on this, but my eye Prof changed my IMT and neither op took place before inflammation was controlled.
I think it's important that post op follow up is with both your retinal surgeon and your uveitis specialist with the rheumatologist prepared to act quickly if further adjustment is needed to the IMT. When my surgeon said he'd treat post op inflammation with steroid drops, I asked the rheumatologist for a better plan.
If you have any worries about pain and discomfort, I didn't need more than a couple of pain killers immediately after the ops and with one eye, you wouldn't have known a surgeon had been near it. The other eye was blackened and the surgeon blamed an antibiotic injection to the tissue beneath it for that damage.
I think surgeons are obliged to point out the possible complications and with the stakes as they are for you, it might help to ensure your surgeon is highly skilled. My uveitis specialist chose the surgeon carefully and everyone who examines my eyes admires his work in them.
I hope you receive enough information from others to feel more confident about the decision you make.
My husband has uveitis. I know his local doctor has mentioned a possible vitrectomy to clean up the debris and floaters. It was only mentioned in passing though.
I would recommend maybe a consultation with Dr. Foster.
He was on mtx oral and then MTX injection for about two years. Just when we thought we were headed for remission, the mtx stopped working. his local rheumatologist and opthal wanted to put him on Remicade, but our insurance denied it.
That's when we went to MERSI to see Dr. Foster. He then prescribed cellcept and cyclosporin. I will be honest and tell you that -- at least the dose he is on -- makes him very tired. Our local physicians do not see any active cells, so we assume the cellcept and cyclo is working
We have been seeing Dr. Foster for two years now. We have an appointment with Dr. Foster next Thursday for a follow up and avastin shot due to macular degeneration cause by the birdshot.
Our hope is to get to the bottom of this excrutiating eye pain that he is suffering from. We have a couple ideas of what it might be, extreme dry eyes, or possible cervical spine problem.
I am not sure where you live, Kristi, but you might be able to email your question to ask dr. foster if you can't make the trip to Boston.
But if it is at all possible, try to go see Dr. Foster as your local doctor can always consult with Dr. Foster.
They are very accommodating to patients who travel from out of town as far as squeezing in any necessary testing. We live about six hours away
and they have been wonderful.
Re: Has anyone had a Vitrectomy? (spelling?)
Hi Kristy,
Mike sent me a note asking if my daughter or myself could read your post and reply to you. My daughter has had 3 vitrectomies, and I will share with you what she experienced. She would do this herself, but she is so busy with her hectic school and volleyball schedule, that I rarely see her sit down at a desk to go online (I guess I shouldn't be complaining)!
First of all, a vitrectomy is considered major eye surgery. I don't want to make it sound like something it isn't. Is it worth it? YES, yes, yes, and yes. One of her vitrectomies did not have lasting effects because she was not put on immunomodulatory medicine along with it. My daughter would not beat uveitis with medicine alone. She would not beat uveitis with vitrectomies or any other eye surgery alone. Patients with pars planitis or panuveitis, need in my humble opinion, BOTH.
After surgery she would have a couple of rough days with pain, feeling sick to her stomach, and headaches. Each surgery, however, sparked different intensity of symptoms. If her panuveitis became inflammed, the symptoms were far worse. With her medicine in place, and after healing from her surgeries, came resurrected vision and new opportunities. So, now you can see why I say it was worth it.
I would not let anyone touch my daughters eyes again unless I trust them whole heartedly. That someone needs to know the plan of attack, needs to be able to prescribe, and the one to do the surgeries or at the very least be the one directing the others by being in charge.
I hope you can find that Dr. that will put your plan into motion, and help you to have a clear path to follow. It is worth it to fight, and to never give up.
My husband also has had three vitrectomies. The first was bc he has so much gunk in his vitreous that he could not see in and the doctors could not see out.
Dr. Foster did the vitrectomies in both eyes. My husband already had had two ahmed vales put into his eyes to circulate the eye fluid bc his gluacoma had dmaged the optic nerves badly, and he had had cataracts removed from both eyes, all that within about 6 or 7 months. The docs at home were not happy trying to operate on such damaged eyes to remove vitreous. We consulted for the first time with Dr. Foster on Bob's Uveitis, in Aug of 2004 He had the first vitretomy a few weeks late, as soon as we could arrange reasonable flights from Louisiana. The other eye was done two months later. He has spectatcular results. He has severe dry eye to the point he could not read better than 20/100 sometimes bc of just that. Dr. Foster tackled that too. He had developed macular edema in both eyes after previous surgeries here, and Dr. Foster tackled that while in there doing the surgery for one eye with a type steroid he put in while operating, and took care of other one with injection into eye.
I won't go inot the whole long story bc it would take too long, but he had his third vitrectomy bc one of the ahmed valves intermittently touched his cornea and destroyed the cornea over a couple years or more. So on July 27th of this year Dr. Foster did the third vitrectomy, put that pesky tube into vitreous, pars plana, then put in a cornea transplant.
He has had great healing of that eye since then. I hope you can read this by the way bc this is the third time this week I have posted without my glasses bc I lost them somewhere here at home.
Compared to my eyes, I have some stuff in vitreous, tha annoys me, makes it hard to read when it gets in the way, but I would not need a vitrectomy bc I can see too well to risk it.
So I guess I am saying that if someone wanted me to consider a vitrectomy, I would want a consult with Dr. Foster after seeing his skill and knowledge. I would want to know if he thought there was a better chance of treating it without a vitrectomy. If he advised it, I would hope he would do that surgery himself bc it does have risks, but it is worth it when it is what it needed to save your sight. If could could operate so successfully on Bob's eyes, than he would do a successful vitrectomy if one can be done on someone, and he would also be the only person I would trust to let me know if there were alternatives and it could be put off a while.
A final case. My friend had one a couple months ago here at home. She has very healthy eyes overall, as do I, so I figured she would have good results with a competent retina doc. We do not yet have the complicatons in our eyes that would make it require someone with vast knosledge of serious eye issues.
vitrectomy
Hi Kristi-I haven't posted in a few years and am now just getting reaquainted with this board. It was a wonderful resouce and a great comfort to me when I was first dx'ed with intermediate uveitis. I have had a vitrectomy (and a retinal peel at the same time) in my right eye because there was so much debris it affected my vision. I felt like I had nothing to lose. I was thrilled with the outcome. I was already on IMT using a mix of Humira, Cellcept and Methotrexate and was showing no inflamation or cells. I did take some oral Pednisone for about 6 days before the surgery
and I think I had a Kenalog injection into the eye just prior to the surgery -I'm not positive because I was pretty loopy at that point. (the drugs were wonderful-I wasn't nervous at all) On scale of 1-10 the discomfort level afterward was about a 5 for about 48 hrs. What really bothered me was the anesthesia (sp?). I was tired for days afterward. I had had cataract surgery and it didn't bother me in the least so I wasn't prepared to need a few days to get my energy back. I don't know if being on the IMT and being flare free was the reason for my results but I would guess it was a big help. Like other people who have replied I think it's important to be flare free before operating on your eye for anything but an emergency. The improvement in my vision was incredible. I am so happy with the results. I would do some checking on the surgeon and make sure he or she has done allot of these things. This is not minor surgery. Especially in your situation. I wish you good health and a wonderful outcome. Sara
Hi Mike and Mary-It's so nice to be back on board. I feel like I'm talking to old friends. I'm going to have go back and read some old posts to catch up on what and how everyone is doing. I have had a couple of setbacks but I have been flare and cell free for about 9 months or so. Still have some debris in the left eye but it's tolerable. My right has been perfect since the vitrectomy. We have been able to reduce the MTX from 22.5mg to 9mg and I'm hoping that the Humira will be the next drug we eliminate. My dr visits have gone from every 2 or 6 weeks to every three months. Hooray. I love my Dr but hate the long drive. My wonderful husband takes me out to dinner on our way home so it makes the drive a little more fun. It's only 3 hrs round trip so I'm pretty lucky. We traded our Subaru for a Prius to help with the expense of gas.
I'm going to have to go back and read some old posts to catch up on how everyone is doing. I have noticed that there is a change in the format and there is a section called "friendships" so I'll go there too. I have to say that I think I like the old combo of coping and friendship in one place. Who but friends help you cope??? I'm just an old dog who has a hard time with new tricks I guess. So Mike and Mary how are you two? Mary I noticed that you are the new facilitator for this link. Congratulations. We all just probably drive you crazy! Mike what's new up in the Nor'west? Ready for the winter? We have had a looong summer (temps still pushing 100). Amazingly the nights are in the 50's so it's good sleeping weather. I can't wait for the first cold days with a fire going, a cup of tea and a good football game on. Please let me know how you both are fairing. I'll go read those old post now and catch up. Sara
Re: vitrec
Sara,
usually one stays on the IMT combo for TWO YEARS once off all steroids without inflammation. to get off them sooner is risking a major flare up of the uveitis. it takes two years to retrain the immune system to stop making the white blood cells that are attacking your eyes.
I'm doing pretty well, diabetes went out of control and I just started insulin. my eyes are quiet, my pars plana is completely free of any sign of exudate in both eyes. my ERMs are not growing, my CME is quiet as far as I know but I have been getting some 'fanblade' effect now and then so it might be present subclinically. an OCT scan would be needed to determine if CME is present or a Fluroscein angiogram..
the friendship forum was started so that some of our 'banter' as good oldtime members wouldn't overwhelm new members. cutting to the chase supportive material since many have trouble reading when the first come here with their eyes inflammaed.
![0]](http://uveitis.org/kids/images/beer.gif)
It's only 3 hrs round trip so I'm pretty lucky. We traded our Subaru for a Prius to help with the expense of gas. 
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