Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Thea, I really think it is time you get a referral to a neurologist. Neurosurgeons, ie Broad, cut you up and fix things that way. Neurologists are more suited to help with pain, etc. I went to see Dr. Ellecker at the U of A. He's good, very thorough ... he read my WHOLE medical file (two yellow pages size volumes!) He may be able to help you. I believe he is also familiar with NF2. He'll want to see your films (MRI) as well. > From: ZielTh@... > I have over the > past year had increasing earaches and over the months added on head aches > and now the pain is so bad (although it is only every 4-5 weeks and otherwise > I have some bearable ear/headaches) that I vomit and am totally out of > commission for that time. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 At 02:21 AM 12/04/1999 EST, you wrote: >From: ZielTh@... I have over the >past year had increasing earaches and over the months added on head aches >and now the pain is so bad (although it is only every 4-5 weeks and otherwise >I have some bearable ear/headaches) that I vomit and am totally out of >commission for that time. ___ Thea: I had the same type of symptoms for five years. The surgery I had several months ago, for a regrowth, took away a lot of the symptoms. I have never vomited from the pain, but came close to it, getting very nausous. I, also, had facial pain on the same side of the tumor. The doctor told me that the tumor was invading the nerves that was involved with the pain. I would definately seek several opinions about your pain. Pain killers will only mask the problem. Even though they come in real handy! Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Hi Thea, Yep,I have lots of pain and it all adds up to a pain in the butt ))).I have severe headaches and eyeaches because of the dry eye problem and I also have HORRIBLE pain from radiation damage and from being burnt.This is a nightmare and the only relief from is is a drug called trazedone but it puts you to sleep.For the eye aches and horrible head aches I take Excedrin migraine and it works realy well.Hope I have helped you. Lana in Minnnesota:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Hmmm... I also have dry eye problems. But the doctor has me using Celluvisc eye drops every hour during the day and Refresh PM ointment at night right before bedtime. I'm curious if anyone else has dry eye problems and what is used to combat the problem? June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 At 07:21 PM 12/04/1999 EST, you wrote: >From: ManelyCat@... >I'm curious if anyone else has dry eye problems and what is used to combat >the problem? > >June ____________ June: I am one of many crew members who has to cope with dry eye(s). I cannot get any relief from drops, so I use a gel in the daytime. I like Genteal gel and Tears Again gel. I use any type of night time ointment. They all seem to be pretty good. I am getting a plug put in my right tear duct on Monday. I should have done this years ago. Hopefully, it will help! Sherry Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 4, 1999 Report Share Posted December 4, 1999 Hi Sherry, About the plug....make sure you get it checked periodically. I also had one done and it popped out. I don't have one any longer. I use just the drops and the ointment. One thing that I could never get used to with the plug is that you can't really rub your eye. I think that's what made the plug pop out. I was so used to doing it, and the Dr. didn't tell me not to:o( do it. So... Good luck with it. Let us know how it goes... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 >From: ManelyCat@... > >One thing that I could never get used to with the plug is that you can't >really rub your eye. I think that's what made the plug pop out. I was so >used to doing it, and the Dr. didn't tell me not to:o( do it. So... ------------ I had my temps pop out too, so what they did, because I just loved how they helped my eyes stay so moist, they lazered them shut. I was told I can reverse it, but why would I ever want that? Depending on the weather I can get by on 0-4 drops a day in my good eye... and in the other, which is blind so I dont mind the blurring, I use lacrilube. No plugs or worrying about them falling out now. Jennette [Oregon] Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Hi June, I have rreal trouble with dry eyes and use celluvisc during the day and hypo tears at night. hopes this helps. Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Thanks Lana, I think I used HypoTears at night for a while and built up some kind of allergy to it. That's when the Dr. changed it to Refresh PM. The Celluvisc works good, but is kind of expensive for me. I don't know what's next in viscosity (other than an ointment). So I hope it keeps working cuz I don't really like ointments during the day.. Do you have any trouble with the Celluvisc? I find I need it quite frequently (like once an hour) You? June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Hi June, Today my eyes are really bothering me and they have been the last few days real bad.I am trying to do school work and that is kind of hard on my eyes and have been hitting the books real hard today.I am finding that I need the celuvisc about every half anhour.And I will gladly put up with that than the recommended treatment an eye dr. wanted to do,sew my shut!!! Have you heard of that? Lana in Minnesota:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Hi Everyone:) OOOPS!,that should of said sew my eye shut Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 1999 Report Share Posted December 5, 1999 Hi Lana, Oh yeah. I've had my eyelids surgically closed too. Both eyes, though not at the same time. It's hard. You feel lopsided. BUT it gives the eye time and the right environment to heal or recover or whatever you want to call it. The eye has the chance to lubricate itself. FYI, it's not that bad. So if your Dr. suggests it and it's the best thing to do, don't be afraid of it! One thing about it is that when they open your eye again, they might leave some of the lid attached. That's like me. They do this so that the eye can get some lubrication. I still have to use the drops and the ointment, though. But I'm much better off than if I hadn't had it! June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi June, They wanted to sew my eye shut forever!I said NO way.I do have a tuck in my right eye and its still bad but what is messing up the left one so bad is radiation damage.I am so badly burnt and have pain that I can't believe it.Do you know anybody else that has radiation burns.I certainly would like to talk to them and share stories.Anyhow I didn't want it sewed up because I figure I am messed up enough and I CAN " T TAKE anymore.I am only 42 years old and I just said no,but maybe I will have to change my mind...How did you make a decision like this.BTW,I am single and dating some so that has a lot to do with how I feel. Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 June: Thanks for the tidbit of info. I had the plug inserted about five hours ago, and I can't believe the difference it has made. I am skeptical though, I will give it time to see how much it really is helping. I asked the doc about rubbing my eyes and he said to do whatever I normally do. He said if it comes out he will put in a larger plug. I am going back in two weeks so he can check to make sure it is intact and OK. Maybe technology has improved because my dad had them put in both eyes nearly ten yrs. ago and the doc told him to NOT rub them. He still has them intact! If it just helps to provide relief with my eye medicine, I will be happy. The inside corner of my eye is always dry, and I see moisture over the whole corner now! But. . . time will tell! ) Thanks again! Sherry At 10:38 PM 12/04/1999 EST, you wrote: >From: ManelyCat@... > >Hi Sherry, > >About the plug....make sure you get it checked periodically. I also had one >done and it popped out. I don't have one any longer. I use just the drops >and the ointment. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 At 09:16 PM 12/06/1999 EST, you wrote: >From: Kizzycom@... > >Hi Sherry, > >Can you tell me a little bit about the plugs,I am debating that decision >right now?Does it hurt?Dr.said he can do it right in the office. Lana: It did not hurt a bit! It took the doc about 60 seconds, or less, to insert the plug. Yes, they did it in the doctor's office! When he inserted the plug, he said that I would feel a slight pull. I never felt anything! When he stepped back, I asked if he had put it in yet! He was finished! The nurse had put a drop in my eye a few minutes before he put the plug in and I asked what it was for. She said that it helps the eye relax so it will be easy to put the plug in. He asked me to come back in two weeks so he could check to see if it was still intact and there were no problems. He explained that the tear duct is lined by a small cartiledge and he kind of stretches it to insert the plug. But, I never felt a thing! ) So far, I am wondering why I didn't have this done years ago! Sherry ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi Lana, Actually, the doctors decided to open the lids. I didn't. I think that they saw that the eye was healed enough to take the stress of being opened and the daily usage. So, here I am ) FYI - my left eye is fine, though the lid does not work (I think there is nerve damage - and it doesn't blink). That is the primary reason for the Celluvisc and the Refresh PM. The right eye is a different story. I have maintained the blinking of the lid. BUT, I've developed an opacity on the cornea and am legally blind in that eye. It's weird how things work out sometimes. I think that the " eye " problem facilitates the balance problems that I have. It's hard to maintain correct balance when you feel lopsided because you can't see appropriately. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Lana, About the radiation...I don't know. I think that I had some on my brain. I have souvenirs (2 small black dots). But I don't know if I have any underlying effects from the radiation. I know that I don't feel any overt ones! On which part of the body did you have your radiation? And for how long was the treatment? A month? June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi June, I don't feel so quite alone in the eyesight battles.It's hard enough to cope with loseing your hearing,the damage that the NF does and now the eye sight.It sure is nice to have someone to talk to and I totally understand the balance problems,since my eyesight is getting bad I walk a lot more like I am intoxicated.Every day is a new battle ,hang in there Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi Sherry, Can you tell me a little bit about the plugs,I am debating that decision right now?Does it hurt?Dr.said he can do it right in the office.I have not heard much about this procedure,I would appreciate your info. Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi June, Do you know what feels really good on my eyes,a steambath or a sauna.have you ever tried that.Or if my eyes get real bad I take a big pot of water and but it on the stove to boil and put my eyes by that.It is really dry here in Minnesota right now with the heating season so I am always throwing wet towels and sheets and stuff from the washer over the doors to dry. Lana in Minnesota Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi June, I had the radiation on a left AN and it was a big dose and I got zapped quite a few differnt times.I ended up with rdaiation damage to the side of the face and head and its taking my vision and my mouth is all burnt inside and I have know tasted buds.In fact it feels like I had hot coffeen dumped in my mouth and the side of my face and head feels like its frying all the time and burns horribly and electricity zaps through it all the time.It has completely paralized my face on the laeft side.It's hard to deal with. Lana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 Hi Sherry, That's great about your plug! Keep me posted. I may try it again. The problems that I had the first time around may have been my own doing. So I'm curious how it goes with you. Do you like it? Those kinds of things. June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 One thing Sherry, I never knew that it had fallen out. Maybe I should have had a follow-up appointment sooner than I did. Hmmmmm...... June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 1999 Report Share Posted December 6, 1999 At 05:22 PM 12/5/99 EST, you wrote: >From: Kizzycom@... > >Hi June, > >Today my eyes are really bothering me and they have been the last few days >real bad.I am trying to do school work and that is kind of hard on my eyes >and have been hitting the books real hard today.I am finding that I need the >celuvisc about every half anhour.And I will gladly put up with that than the >recommended treatment an eye dr. wanted to do,sew my shut!!! Have you heard >of that? > >Lana in Minnesota:) >------------------------------------------------------------------------ >See what's happening for NF2Con 2000! >http://www.home.earthlink.net/~earldillon/nf2convegas2000.html > Hi Lana I have problems with dry eye as well. I have a small vaporizer going at all times it helps! We have such dry air here. Marnie from Calgary Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 8, 1999 Report Share Posted December 8, 1999 Hi Sheryn, I had GN and the first time I had it was in 91 and its causing lots of problems to my left eye,like drying it out and bluring my vision.I have had trouble with my vision now because of it for quite a few months.I did have to get help with state blind services to help me with reading telephone books and my school work etc.I do put celuvisc in my left and right eye daily and some times every half hour or 15 minutes in my left eye.Some days I cannot read the captioning at all on my tv.At night I put in this greasy stuff called hypo tears.It gets rough at times and today is a day I have got nothing acomplished yet and my get up and go has got up and gone....Sound familiar :)It's nice to have people to share with that understand. Lana :)in MInnesota Quote Link to comment Share on other sites More sharing options...
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