desparate for relief

[klangel]

i have had serious eye issues since my surgery in 2005. because so many things went south post surgery and i was in so many different places in the hospital (7 during my ( day stay) the folks there neglagted my an eye and it was severely injured. this led to bad chronic corneal erosion. i have full closure of the eye but it has always felt as if it is being continually poked and it has a cyclical type thing that hurts real bad. i usually need an eye patch at least once a month fo about a week. i have been to 3 different eye specialists and with meds and care the erosion has gotten a tiny bit better but not too much. there is a laser surgery that is done for this but they a hesitant to use it on me as its no guarrantee that it would work and i heal so slowly since surgery. the last eye doc tried bandaging it with a contact lense and altho it hurt it healed the erosion a little.but now ive developed yeat another bad problem! my eye is feeling like someone is literally putting a cigarette out in it. there is no rhyme or reason to this and the location of the pain is wierd. its up under the eyelid on the white part. the doc cant see anything wrong there. it isnt even red!still it makes me incapacitated and screaming in agony. been using cold packs but cant do that when im out and it only provides moderate reief (as long as the cold is on it) i am on restasis now and that also burns. i have xylobrom drops but they do not touch the pain for more than 20 seconds. infact none of the dpops or glops help this one. not sure what to do. but i know i cant live this way. wondering if anyone else has these attacks on a daily basis and what kind of doc they see about it. no one can even live with me this way i just want to rip out my eye and throw it in the garbage. it really burns like acid and i dont know what to think. it makes me sooo mean. any suggestions?     kerri

[nancyann]

kerri:  I am so sorry this is happening to you.   I have had only a couple of bouts like yours, & that was when I had a corneal tear - the pain IS excruciating, so I'm wondering if this is what happened to you.  I go to an opthalmologist routinely to check on my cornea.  Are you keeping your eye lubricated 24/7 ?   I use Refresh PM lubricant - it works the best for me but everyone has their 'special brand.'
Best wishes in getting to the bottom of this,
Always good thoughts,   Nancy

[klangel]

hi nancy, thanks for the response. i keep it lubed up all the time and have about a hundred different kinds even have muro glop fot night and have resorted to using it in the day too.the only yhing that helps now briefly is ice. even my artificial tears and the pain drops burn like acid and it just burns on its own as well. doc says the cornea is lookin fairly good  even the erosion is milder than 2 years ago. he said its possible that its neurotrophic painlike maybe my messed up wires are sending a bad signal to my eye telling it its hurt i suppose. i  just dont know what to do. its impossible to live like this. i have the ice on it now infact so this is taking me forever. im gonna have to find someone who can fix this or at least make it bearable  because im good for absolutely nothing this way. i stopped the restasis to see if it would help still use the xylobrom twice a day for pain altho it does very little at least it burns less than acular! im really in a quandry and im quite sure i am no fun to live with right now. this is absolutely driving me crazy!     kerri

[moe]

Dear Kerri,
Oh you poor dear, I feel so bad for you!
My AN eye is a bother 24/7 with the weight of the weight and keeping it lubed, but I cannot empathisize about your pain.

Knowing that your cornea is OK should ease your mind.

IMO, you need to get to a doc for pain control.

There are many meds out there-
Neurontin (gabapentin) comes to mind. It is used for diabetic peripheral neuropathy pain (that  tingling annoying sensation that people get).

I'm a home health nurse, so I see different things.

Also, elavil helps with chronic pain and is a good antidepressant.

Hopefully your doctor can steer you to a specialist or psychiatrist and fast.

What you are feeling and going through really is unacceptable.

If only people could be "in our shoes" for just a day! (or minute).

Hang tough,
Maureen

[nancyann]

kerri:  I agree with Maureen -   you need to be seen by an opthalmologist or a neurologist/ pain specialist,  you can't keep on like this.  I can only imagine how it feels & I can't imagine going for a day with such pain let alone longer.
Best wishes,  Always good thoughts,  Nancy
let us know what happens...

[klangel]

hi nancy and maureen, yeah ive been to several neurologists and i see a psychiatrist (am on mild xanax for stress and pamelor for depression which also helps the 24/7 headache a bit. i also se a physiatrist for severe atypical facial pain and get botox injections for that. some of it does involve the eyesocket but theres nothing to be done about the eyeball itself or so it seems . have already been to 3 eye specialists. been told or a place in pittsburgh that deals with neurotrophic eye pain. am anxiously awaiting their #. there apparently is some sort of a surgery where they go in there and insulate the nerve. dont know much about it but know somethings gotta give. i feel as if i have to spend one more day like this i may go insane. give me the rubber room and one of those nice little jackets with the arms that tie in the back! ha! p.s. neurontin and elavil didnt help. ive been dealing with eye pain of sorts for 4 years but this really takes the preverbial cake!  thanx for letting me vent while i can still see right today.   kerri

[nancyann]

kerri - funny you should mention the 'rubber room' - I work in a psych. hospital so I can help you out with the room.  We don't use the straightjackets anymore,  but we have some arm/leg restraints that I think will work !
Seriously, I hope you find relief soon,  Nancy

[klangel]

haha thats pretty funny nancy. i may take you up on it the dreaded afternoon having been awake to long episode is striking. if its like the last couple weeks ittl get progressively worse until i finally go to bed about 9. many odd and unpredictable symptoms since surgery. all  happen randomly tho so i hope this one at least stops every so often. heres hopin!   kerri

[saralynn143]

Kerri, have you had an MRI since your surgery? I have read about instances where there was scarring on the occipital nerve following a craniotomy, causing severe pain, and there is a nerve block treatment for that. I wonder if it could also be true for the optical nerve?

Sara

[klangel]

yeah sara i have them every 6 months because they left some tumor over the facial nerve and it is changing. neurosurgeon says ill probably be a candidate for a little  gk in the next few years. there were some puzzling things on my last one tho. since we aners have to be our own docs  maybe i should ask the current eye specialist to look at it. perhaps that is the nerve to be "insulated" that the one doc said. gonna give the eye guy a call tomorrow morn anyhoo cuz ive now got the ice patch on it and am in a quandry whetyher i should attempt to go to my ladies aux meeting at the firehouse. i just feel like such a freak.   kerri

[klangel]

well hopefully this is the final scoop on the eye pain thing. i went to philadelphia friday to wills eye hospital. it seems i have several issues with my left eye going on all at once. (surprise, surprise) as well as the corneal erosion (keratitus) my eye is very dry. but my left eye doesnt tolerate the restasis or any other type of drp anymore. i also have random inflamation of the troclear muscle. i was told this is a small hooked muscle that works sort of like a pulley to assist in the movement of the eyeball. allegedly the cranial nerve damage causes episodical inflamation of this muscle hence the terrible pain. will have yet another mri to rule out the possibility of any other probs but will also have steroid shot in that muscle. doesnt sound too appealing but if it works i will be ever so grateful for relief. in the meantime i just have to keep it glopped with lacrilube and muro and do warm compresses and patch when its real bad. wish me luck!

[nancyann]

I hope the shot helps to take away your pain.   Good luck on your treatments.
Always good thoughts,   Nancy

[moe]

Thinking of you and hoping you get some relief, Kerri.
Let us know how it goes.
Maureen

[reg]

hi and sorry to hear about your on-going eye problems, let me weigh in on the thread iam 2.5 years post-op and i also have on-gonig eye problems, i had an eye alignment surgery (screbismus) i think thats the spelling.  while hospitalized i inadvertly hit myself in the eye and damaged my cornea because of uncontrollable right arm (was tied down as a result) i havent produced a tear since an surgery also eye is real blurry and sometimes red and achey.  iam scheduled for eye appt to get a contact for that eye, hopefully that helps, iam chiming in to say you are not alone and keep the faith something will work out. (ilast year i couldnt even see the keyboard on my computer or i didnt want to post now i am excited to read and post, so dont give up this is a excellent forum)