ANA Discussion Forum
Post-Treatment => Eye Issues => Topic started by: ladyref56 on September 14, 2010, 02:25:28 pm
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Hi all I am new today to the discussion forum, but hope it helps with all the questions I have. I had my AN removed May 26, 2010. Golf ball sized tumor; I have been left with left side facial paralysis; no hearing in my left ear and problems with my left eye. I keep hoping that this will all go away with time, but since it has been almost 4 mths. I am not sure it is. Does anyone have any suggestions on what types of treatment I should look into. So far nothing from my surgeon has been recommended.
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Hi - and welcome.
I'm sorry that you're experiencing problems with your eye (and more) and I trust that some of our helpful members will be posting with advice and suggestions.
Jim
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Hi ladyref56 and welcome to this forum. I wish you had found us sooner to share with you and walk this path together. However, I am glad you posted now and others will be along shortly with many comments, I'm sure.
I did not have the huge AN you had and therefore I did not have the post surgical problems you have had. However, many forum members have had large ANs and I am sure they will be able to reassure you more.
In the meantime, have you had any movement in the left side of your face? What kinds of problems with your eye? There are many additional things to do/try ...... hang on!
Best thoughts.
Clarice
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Hi there lady: well, hearing that you have paralysis, I would hope you have been referred to an ophthalmologist to have a weight put in your upper eyelid to help with blinking/gravity. It's extremely important also to keep your cornea moist - I use Refresh PM exclusively, all during the day.
At night I use a product called NITEYE, the dry eye comforter - it's like an oval plastic with adhesive around it - I apply it every night over my paralyzed eye & it makes a moisture chamber + protects the eye while sleeping (I hate having to remove it in the morning !).
Let us know what is bothering you the most.
Conitnued healing, always good thoughts, Nancy
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Hello. 4 months seems like forever but it really is not a long time past this type of surgery. Return of the face can be very slow as the nerve has to heal to make the muscles work again. Facial muscles are not of the same fiber as regular muscles so it does not atrophy as fast. Facial therapists do not usually want to see pts until close to a year past surgery. I assume you are taking good care of the eye with lubrication of a heavier type of gel. It varies what brand and type we each use but a heavoer liquigel or tube type gel I had a nerve graft as the same time as my nerve was severed with a facial neuroma and was told it would be 8 mos plus to see any improvement and that was about right. I do not have complete movement but enough that do the closed mouth smile and the eye closes. My grandkids know it is still me. Actually only have 2 and the youngest only knows me as I am now, I did not have the gold weight that many have and is of great help to the eye.
There some here who have had help with the hearing by having a BAHA which is the bone conduction implant or some with a Transear which fits in the ear. One does adjust in time to the problems we may have past this surgery and live with it better over time. All depends on ones own personality and way of life.
Feel free to ask any questions here as we like to be of help, Cheryl R
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Did your surgeon indicate whether your facial nerve is still intact? If so, time is on your side and you can wait to see if there is facial recovery. If not, you can look into several options for facial reanimation, such as a nerve graft or jump, or the T3 surgery that several members here have had.
In either case, I highly recommend that you see an ophthalmologist. Eyelid implants are reversible if you do get eyelid movement back, and meantime it can improve quality of life immensely. Even if you do not opt for an eye weight, you do need to see that your cornea remains healthy. For many of us that involves eye gel rather than drops.
I was deaf immediately post-op but my hearing has returned to about 85%. That took place within the first six weeks or so, though, and my nerve was stretched, not severed. Do you know if your hearing nerve is intact? As Cheryl said, there are many options for dealing with single-sided deafness. If you haven't visited the Hearing Issues forum, there is a wealth of information there.
Best wishes,
Sara
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Ladyref56, welcome to the Golfball-sized Tumor Club. ;) I'm sorry you have had to go through this, but you have found the right place. My tumor was similarly sized and my surgery was February 13, 2010.
I have the issues you've described along with left-side vocal cord paralysis and difficulty swallowing. Those are by far the worst, but manageable.
I know it feels like forever, but four months is not such a long time, especially since we are all different. Also, the body has its own time table and doesn't seem to want to share that with us.
As for your hearing, what kind of surgery did you have? Was the intent to save the hearing? Many of us are single-side deaf (SSD) because of our experiences - either because of the damage by the tumor or the necessary surgical route.
As others have said, go see an ophthalmologist. You want to do this minimally to ensure you are managing your eye care properly and protecting the cornea. They can also test for field of vision and other issues related to nerve recovery. I had severe double-vision for months after surgery. Through various corrective processes (partial taping of the left lens and use of prisms) and time, by five months post it was all but gone. However, now at seven months, I still don't blink automatically and do not produce tears on that side. But I can fully close my eye and blink voluntarily. The other eye treatments that have been mentioned may be appropriate for you.
Facial movement starts very slowly. I started doing exercises about 6 weeks post. It was very frustrating as I could not make anything happen on the left side. Eventually, I noticed that I could make the tiniest twitch. I couldn't see it, but I could feel it. Today, I have about 80% recovery...enough to pass for normal. The process is slow. However, as others have said their are other surgical options to consider.
I share a little bit of my story with you to give you hope and a sense of the process. While I have been lucky with these aspects of my recovery, I have a very long, slow slog ahead of me that may well include more surgery before I ever have a voice like I had before. The same is true for swallowing. None of us can tell you what your outcomes will be, but I think we can all agree that four months post-surgery is a very short time. Especially with a big tumor.
If you read through the many posts hear, you will find that people are reporting not only improvement after two or three years, but sometimes the first signs of the nerves recovering after that period. So, while the road ahead may be long, its far too early to become discouraged.
You have found a good place to for support and advice.
-Tod
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Here's an unfortunate welcome to the world's crappiest club. I've been a member since July 09 when I had my "Golf Ball" similarly removed; actually debulked in preparation for CK RadiationTreatments which took place in Jan '10.
I experience all of the same issues you have, plus a few. I have noticed minor improvement over time, but for the most part, left side facial paralysis, eye issues, total hearing loss, also left side and, swallowing issues persist some 14 months later.
If you haven't seen an Eye Surgeon yet, do so immediately. They can offer you a number of interim fixes while you wait for the damaged / traumatized nerves to recover. Get a vibrator that you can use to stimulate the areas of your face effected by the paralysis. I was given one by Dr. Gaye Cronin. She's a well known expert in the area of vestibular disorders...read more about her here: http://www.atlantaearclinic.com/about_gaye.htm (http://www.atlantaearclinic.com/about_gaye.htm)
I think the best advice I or anyone else can give you is to be patient. Over time you will get better; over time! There is no miracle cure for what ales "us." Sorry to hear you're having a difficult time of things. Not fun and not easily overcome...be patient!
Take Care!
;)
Doc
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Hi Lady,
Good previous posts, just wanted to welcome and say hi. I think I'm a member of the olive sized group, and unfortunately had the nerve cut, reanastamosed, with subsequent surgeries for facial function.
Hopefully your nerve was not cut, just stretched so things will slowly improve.
Really, they say not to do anything for at least 6 months. No nerve stimulation stuff, because it may "miswire your nerves", and cause synkinesis (when you blink, the lip twitches as an example).
Takes lots of patience, it's rough, just keep looking for any movement to the lip or mouth. The eye advice is very good too.
Let us know how things continue to go.
Maureen
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::)thank you all for the wonderful, positive posts. I have seen an opthamalogist and am going to San Antonio soon to visit with an eye surgeon. I too use the gels 4-5 times daily and use a moisture pack at night....This is all very hard on me, probably from a vain point of view. Being a high school teacher, the students reaction are all different. Most wonder if I have been to the dentist today???? I am also a volleyball and basketball official; I have returned to the volleyball court but not sure if I will be able to manage running the basketball court. I am so glad I have found you all and look forward to more information from the pros.....I have an appointment tomorrow with my surgeon and have questions to ask now.