ANA Discussion Forum
Archive => Archives => Topic started by: Rhonda on October 05, 2005, 10:54:01 am
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Well today marks 7-weeks since surgery (translab) for me. I'm doing incredibly well. But I have a few
problems that I'd like your comments on. I don't want to go back to work until I know I'm all better.
I do not want to chance a relapse. Here is what is still going on...
--I still have residual facial paralysis/numbness (My face responds about 85%)
--My AN-side (right) eye closes but does not blink all the way. This is my number 1
problem, as it can be painful and annoying all day long.
--Blurry vision. Writing this message is hard. I go back to the opthomologist 10/31.
--My handwriting is terrible--and I'm a third grade teacher! It's getting better, but
I've never heard of people having problems like this.
--Sleeping. In order to get a good night's sleep, I still need sleeping pills. My head
hurts like a bruise and my body aches when I lay down. How long do you feel the
incision? How long until you slept on your AN side?
All in all, I feel lucky. I'm excited about the progress that I've made. I have an
appointment tomorrow with my neuotologist. Should I bring up anything special
to him? It's Dr. Rick Friedman with the House Ear Clinic for those of you that know
him.ÂÂ
Thanks for your input,
Rhonda
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Hi Rhonda,
A fellow teacher here! I am a middle school teacher-librarian. As you know, Dr. Friedman is great. I have NF2 and Dr. Friedman follows my case. He and Dr. Hitselberger removed one of my AN's in 2003. We are following the other closely. I think it is reasonable to ask Dr. Friedman the questions you posted and any others you might think of. I keep a running list so that I remember my questions when Dr. Friedman calls. I did not have your sleep problems. Mine resolved after a week or so. I slept on my AN side very shortly after my surgery - probably within a week. I had no pain at that point. I do not have facial paralysis, but do suffer from a dry eye. My problem was virtually solved by a punctum plug that was put in by my opthomalogist. You may want to ask your opthomologist about that. I am sure that you know it is very important to take care of your eye.
Best wishes,
Jeff
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Sounds like the same troubles as me .. use Laci-lube during day if you have too .. it makes your vision VERY bad, but at least your eyes feel better ...also ask about a stoke ... that would explain poor hand coordination (my writing is also like a child). I dont have any pain and I can sleep on that side. its the dry eye that also bothers me the most..
Joe
4 cm removed at House
Aug 9,2005
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Hi Rhonda. My handwriting after surgery was terrible. My OT had my practice to regain my strength. I started by coloring with crayons, then practicing the alphabet.
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Hi all,
Another teacher hear - high school physics. I've asked this before, but there sure seem to be a lot of teachers with ANs. Probably has to do with No Child Left Behind.
Anyway, I too will need my handwriting, as I use the whiteboard constantly. I'm having my 3cm right AN removed via translab on November 7.
My only question is this: What if my handwriting is already terrible?
Hang in there, everyone!
Josh
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then it wont get any better !!!! ... ;D
most do not have hand problems ... but if you do, Pembo OT gave the right advice .. pracitice , pracitice , pracitice and it will get better ..
Joe
4cm removed at house
Aug 9,2005
baha on Nov 17,2005
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Still another teacher--high school Spanish. however, just retired in July.
I had rotator cuff repair 3 years ago and had to write with my left hand ( I;m right handed) for 6 weeks.
My an is as yet untreated due to problems with my insurance. it is 2cm on the left side. have very slight hearing loss but do have dizzines and balance problems. I'm trying to get it zapped if my ins. ever decides to let me. I've filed an appeal.
I year ago I had a really bad fall, in the classroom with 30 teenagers as my audience. Landed on my butt and cracked my head on the computer counter at the back of the room. The whole class heard my head hit the counter lol! I didn't know then about" the invader" but I'm sure the fall was related
Susi
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Hi, an English secretary here also 7 weeks post-op (trans-lab). I have trouble with my eye but use Lacrilube a couple of times a day. Blurry vision but no pain. I can just wipe my fingertip across the lids and it clears for a while. I have slept on the AN side for the last 3 weeks and it's OK but the scar has started to ache, a stinging feeling really, just recently and I bravely looked in the mirror behind me yesterday and found quite a large indentation behind my ear.Has everyone got one? I hope to go back to work in three weeks' time and I am able to drive now when my vision is clear of course. I've had my first follow up at the Manchester Royal Infirmary and they were very pleased with me. My face is Grade 3 a month after leaving hospital ( was Grade 4 when I left hospital). I still drink through a straw as I dribble otherwise! My AN was only 1.5cms so I think I was very lucky. It's very helpful to read of other people's experiences and thank you. :)
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A dent in your head? .. I have a dent at the baha site, but no other dents.
Joe
4cm removed at house
Aug 9 , 2005
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Rhonda,
How large was your AN? What method of surgery? Also, I read in one of your pre-op. posts that HEI was out of network for you. How did you get them to change their minds? My ins. co. and I are going round and round. I have submitted some things to them that show the stats. and the recovery time as opposed to our local guys. I know even HEI has some problems from time to time so I am just wondering about size. Does everyone have this dry eye problem post op?
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Hi Sandy and all,
I definately have the dry eye problem. I use the ointment two or three times daily because the drops just wont help me. Hope all is going well since our last chat. :) Sherry
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I've been using Lacrilube everyday since my surgery 16 months ago. The drops just aren't enough. I can use them but I need to put them in at least 2x's an hour. With the lube, I can go about 6 hours.
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In the discussion having to use a gel, have you tried Celluvisc and Refresh Liquigel? These don't leave yiou quite as blurry as the gel. They are heavier than just "tears" and were a god send when I had dry eye past my surgery. My dry eye was only for 3 1/2 months but under rare condition can feel a bit dry even yet. Maybe use a drop every couple weeks now.
These may be ones you've tried but some people occ don't realize there are tears and then heavier drops. Gets to be a bit expensive with trying to see what works the best for each person. Cheryl R.
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Hi Rhonda: I just received my Genteal eye gel through the mail. It works a lot better than eye drops. Someone posted the web address here for me. You can get through a Canadian website, www.feelbest.com. It is expensive, but it lasts longer than the drops, so you don't use as much. I am still using the lacrilube at night, which blurs your vision, but who cares since you're sleeping?! And that dent , yes I have one too!! Small price to pay I guess! :Dluv2teachsped
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Kimmy - I am now 7 years post-op and and I have a large "dent/depression" on my AN surgery side. It first appeared 4 weeks after surgery and my surgeons said "it happens" and told me not to worry about it. I had the middle fossa approach used and my AN was 3.5cm. I hate to touch the area because it feels weird, kind of a tingley sensation.
matti
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How you use Laci-lube ?? .. normaly my wife puts it in while pulling down the lower eyelid while I'm lying down. I cant do this myself .... I just drop it in like the eye drops !!
Joe
4 cm removed by House
Aug 9,2005
l
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Hi all,
 I have a few updates. And questions to answer...
I went to the House Ear Clinic on my own nickel.  My insurance was ridiculous to work with pre-op. I needed to have the surgery in the summer (August 15th) to minimize my absence from the classroom (and kiddos). I tried the appeal process pre-surgery, but it was so time-consuming and frustrating I gave up after a month and just paid for it myself. I got a substantial break by paying cash. My husband is working on the letter, and we just received the invoice from House--we are starting the post-surgery appeal process. I'll let you know how that goes...
My handwriting is better (not back to normal) since I posted last, about a week ago. I am seeing a PT right now, OT released me saying I just needed more strength and practice which I can do on my own. My physical therapist also had a craniotomy 18 months ago, so she gives me a lot of reassurance. She said that I need to practice writing so my hand does all the work (not my entire arm) I'll keep practicing...
My eye seems to close a little more, dryness is still a problem. I tried the GenTeal gel (twice), and it made my eye sting something CRAZY! I'm currently using Refresh Liquidgel drops (about 2-3 times an hour). I just bought Lacri-Lube last night. I'll wait til tomorrow morning to try--I'm scared that's going to sting. :'(
Someone asked how big my tumor was, etc. It was 3.5 x 3.0 cm. (translab) Dr. Friedman said that it was wrapped AROUND my facial nerve. He said that everyone's AN anatomy is a little different the way it grows. I'm so thankful I went to the House Clinic because I'd have multiple surgeries and possible facial nerve severation had I stayed in Phoenix. Freidman also thought I had a lot of cranial pressure because the tumor was extending to the cerebellum. I think that's why it took so long to lay on that side. There was tremendous pressure in there. When the tumor is removed, the brain naturally wants to fill the space that results. I can lay on the AN side now, but I don't stay there for long (10 minutes or so).
I think that's all the questions that were posed. Good luck to all, and thanks for all the input. Take care.
Rhonda
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Hi Rhonda,
Sent you an email the other day. Don't know if you got it. Great to hear things are going well. 7 days until my surgery at House.
Darlene
A fellow teacher/math (interesting to see all the other teachers listed with AN's)
5mm by 8mm at last check in May.
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Rhonda,
I sent you a personal email. I really, really would like to talk with you about paying cash as opposed to waiting on your insurance to approve out of network. My insurance company has refused to approve my going to HEI as an in network provider. Today I found out my tumor is cystic and growing rapidly. It is long and complicated and either I do surgery here 6 to 8 hours or HEI 3 1/2 hours. The doctor hear said easier to do if cystic because it collapses in it self. The internet says no. harder on the facial nerve.
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Hi,
I'm another 3rd grade teacher with an AN. I am 6 weeks post-op tomorrow. Dry eye is the worst part for me too. I like Ligui-gel during the day, but my eye is still a bit blurry. Use PM Moisture eyes at night. My husband puts it in for me and covers my eye with a patch.
I also found it difficult to lay on my AN side in the beginning. I'm just beginning to be able to do that. It feels like laying on a plastic helmet due to the facial paralysis. Laying on the other side makes it difficult to hear, which is okay most of the time.
Wonder if teachers have a hiigher rate of ANs? I like the No Teacher Left Behind idea. :-)
Jean
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Hi Everyone,
I had 4.5 CM tumor removed 5 years ago, ( nope, sorry I am not a teacher :-[)
I have a dent where the tumor was removed also. Feels really weird.
I still have the dry-eye problem. I did have a gold weight put in my eye lid to help it close. But it doesn't hold the moisture at all. I use the lacri-lube, with the drops I need to put them in almost constantly. I really hate the blurry vision. But that eye doesn't see much even without the lubricant in it. :-\
The only doctor I have seen since the surgery is a Hearing and Balance doctor ( he assisted the Neurologist with the surgery). Has anyone else not see a Neurologist on a regular basis?
Terrie
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You should be back at work by now. I had the same surgery at House and was back at work as a medical doctor in 2 1/2 weeks., with dry eye and partial facial paralysis, which has all cleared up now. 11 months post-op now.
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In answer to Sandy's question, not everyone has the dry eye problem. I am 2 weeks post op and have basically no problems at all except hearing loss on AN side. Still not sleeping on the incision though, a bit tender yet.
LL
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Hi Terrie. I saw a neurologist one month post-op but I now have to have another MRI scan 12 months after my op and then see the neurologists a month later with the results of the MRI. I do feel somewhat deserted by the medical profession although I work in a group doctors' surgery. I was told that if I thought anything was wrong I should contact the surgeon but I would have appreciated a little aftercare for a few months and help with physiotherapy for the face muscles etc. Have you got a nasty taste in your mouth too? Even chocolate tastes not so nice!! :)
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Kimmy,
My taste has changed, I am a food and beverage manager at a golf course, on Sunday I made Chili for a big crowd, on the way home my husband informed me it was way to hot, (he likes his hot), but I put extra red peppers and jalapenos on mine and it still didn't taste hot enough. I also noticed that I am salting things way to much and things just don't taste quite right. I had radiation one year ago Oct 5th. Has any one else noticed this?
Deb
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Kimmie,
I know what you mean about feeling deserted, I have tried to call the Neurosurgon a few times right after the surgery and got no results from him at all.
Yes, everything tastes funny!! I have the same problem as Debora, I have the tendency to put way to much salt on things. but it never really tastes like I put any salt on it.
The last time I saw the doctor, he was looking at the MRI and said that the space has filled up with fluid, he said the brain is like a sponge. it should go back to the originial state after the tumor is removed. He said that mine didn't do that. It stayed smoushed. HMMM???? Wonder exactly what he means. I asked but didn't really get a response.
Terrie
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You should be back at work by now. I had the same surgery at House and was back at work as a medical doctor in 2 1/2 weeks., with dry eye and partial facial paralysis, which has all cleared up now. 11 months post-op now.
Sam Rush: I do not know to whom you are commenting that they should be back to work by now but you should know, as a doctor, that everyone who has a.n. surgery has different outcomes and recovers/heals differently as well as personal previous health issues that may or may not make the difference of when they are ready to return to work never mind differnt level of physical demands etc that may be involved in thier line of work. Now correct me if I am wrong but it appeared to me you were trying to tell someone whom you have never met/assessed that they should be able to work already.......is this appropriate Doctor? Kathleen
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To Those Who Wonder What Thier Follow Up Should Be
I too wondered what my follow-up should be after my first resection and my family doctor was unsure as well, it ended up I recieved C.A.T. scan's every few years....that was obviously not adequate as they were all showing no a.n. reoccurance including the one I had two weeks before the first m.r.i. I had post-op (about 7 years post-op) which showed tumor regrowth, I would suggest that you all should be followed up by neurlogists and m.r.i.'s in some frequency....that's just my personal opinion.
As it happens the m.r.i. I had was to rule out another health problem for which I was being investigated, turned out they found the regrowth and never did find the cause of the symptoms I was concerned about. Kathleen
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Wow its been 5 weeks since my surgery, I'm not back to work yet.After reading that you went back to work after 2 1/2 weeks I feel guilty although I have nothing to be guility about, I have not missed work in 12 years and that was because I had my last son.I work in a grocery store,better not work in the liquor dept might be alittle funny.
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I am 7 years post-op and I see my surgeon every year. My tumor was completely removed (or so I was told), but I still have an MRI every other year. Last MRI was Nov. 2004 and no sign of regrowth.
According to my doctor, he will be following me for quite sometime. I wonder if it is because it was done at a teaching/research hospital. At one time I was told I was a case study and maybe that is why I still see him. I am not complaining, I actually look forward to my MRI's and my yearly visits. Gives me peace of mind.
Terrie - I also have a large dent and I hate the way it feels when I touch the area. Hard to describe the feeling, other than wierd. I had middle fossa, did you as well?
Matti
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After reading the post yesterday where a person told the person having surgery here very soon that you will have extreme vertigo that we need to be careful how we report what our own post op symptoms were as it can vary widely from person to person. I had no vertigo what so ever even though I know many may have some from mild to the extreme. Part of how we react post op is how our body has compensated before surgery. I also happen to be one who reacts to anesthetia by being "out" for longer than normal and have almost no memory of even being in ICU and even the next 2 days post op was very sleepy. My biggest feeling afterwards was feeling weak as had no appetite for a week. I was very lucky in walking easily without assistance after the first 2 or 3 times up which I also know varies from person to person. I discovered that I did have the spacy off balance feel when went outside for the first time and in stores and malls. That did improve over time after making myself be active in those settings.
I agree with those about getting the post op care can be difficult as regular family Drs and even some ENT's have no clue about them. I was lucky that my surgeons nurse was very good to answer questions. Cheryl R.
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I agree that people have different outcomes following surgery or radiation treatments, but I also feel like we need to let each other know our experiences and how we handle them. When I got extremely sick from radiation I really felt quite desperate, I can't even begin to tell you how bad it was. My doctors here had never seen someone get so sick and said the radiation didn't cause this. My second doctors at the Mayo said it was the cause of it. My husband found the website for AN and we got the email addresses from people who said we could email them for support. I was only able to find two people who had a few symptoms of mine. I honestly thought I was dying or at the very least so sick that I was never going to get better, I could hardly walk on my own . I think it is so important to let others know what can happen, maybe it won't happen to them but if it does than they are prepared for it, it could help to relieve some of the stress of going through this.
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Debora,
What kind of radiation did you have? I am considering CK and was wondering if that was the kind you had? Any of other symptoms?
Thanks! Suzanne
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hi all. i have just started reading these posts today and thought i'd add my own input.
1) yes, i had extremely dry eye, had bilateral plugs put in (left eye (AN side) had 2 plugs, right eye had one plug), this caused my left eye to be extremly goopy and i was blessed when one of the plugs fell out on its own. the optamologist prescribed restasis and i only have to put in regular eye drops in a couple time a week instead of a couple times an hour.
2) i had middle fossa and i too have an indention where the incision was. i have called the neurosurgeon here (not the guy who did the surgery though) and he says it's normal..but it's still wierd
3) i went back to work after 6 weeks. i felt great after 4 and kinda felt guilty that i took a 2 week vacation. BUT...that first week back to work made me feel like days 5 and 6 after surgery again. in other words...i felt like c-r-a-p. it got better after that first week and now it's hard to believe i've been back to work over 5 months.
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Kristin,
I had MF surgery but don't have any indentation. They removed fat from my abdomen (i have plenty to spare) to fill the void in my head. Did they do this to you?
Larry
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hi larry, yes they did..and now i have a nice 2 inch scar on my abdomen...like you, they didn't quite take enough! :)
kristin
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Matt,
I see my ENT doctor every year for a follow up. I have a MRI done at this time also. He doesn't really say much when we have a visit. I guess I don't really ask alot of questions. I think that is the kind of surgery I had. It happened so fast I don't remember much. I was very out of it by the time they realized what was wrong - I didn't know the year, the president or anything! I had approx. a week to deal with everything that was being told to me. Then it was out of surgery and I had a whole new set of things to try to deal with. :-\
Wow!! I really feel guilty :'( It took me almost a year to be able to go back to work!
Terrie
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Terrie, Don't feel guilty at all. I am a little over three months since surgery and still not able to do all the things I did before. However, I do believe I will get there soon. We all recover at different rates and we all have similar and different symptoms to deal with.
I also am glad to see people posting the truthful things that "can" happen so others won't feel so scared when they similar symptoms. Being able to find others here that have experienced the same things I have has been a great help to me. For a little while after my surgery I felt so alone. Then someone started the Depression thread. After reading and posting there I felt so much better.
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i have heard a lot about the house clinc and i noticed that some people just have them involved or tracking there cases. i am military and was given a doctor near where i am stationed without any other options is there a way to contact the house clinic and see what they think of my condition?
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LaMar,
You can contact the The House Clinic and if you send them your films & reports they will give you their opinion. I think the information you would need to set this up is on their website. I have heard they are excellent if you decide to go the surgical route.
I am very sorry to hear that you have to go through this alone. But you have found the right place, everyone that is apart of this forum is very supportive and they have a wealth of knowledge to share.
I wish you all the best!
Suzanne
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Here are the numbers for House http://www.houseearclinic.com/contact.htm
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Suzanne,
Sorry it has taken me so long to reply. I had the Novalis unit used on me, they screw a halo to your head and then do a cat scan, then they use the newest MRI and overlap the two so they can get a very accurate measurement and shape of the tumor. After a few hours of planning they bolt the halo (with your head still in it ha ha) to the table and start the radiation. They believed that we should do it with one dose of radiation so they did 13gy which is the maximum that I can ever have, if this thing starts to grow again then it will have to be surgically removed. They went in at 5 different areas of the head all aiming at the tumor. I was pretty dopey from two doses of valium but I believe it was under 1/2 hour for the radiation. Start to finish it was only about 5 hours.
My symptons are vertigo (not always severe), change in taste, some nausia, and because of all of this depression. Not every one has these problems, please do what you think is right. I am constantly second guessing my decision and need to come to terms with it, there is nothing I can do about it now. The best part of all of this is my faith in God, and my relationships have gotten stronger. What ever your decision is it has to be your decision.
Happy Thanksgiving and God Bless you and your family.
Deb
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Deb, Just wanted to share with you that I to keep second guessing my decision, but what is done, is done. Sometimes I read about radiation treatments and it sounds so much easier that I wish that was the way I had gone. I will never know if the choice I made was right or wrong so I am doing the best I can with what I have. I am still improving and feeling better each day so maybe I did choose the right path for me.
Happy Thanksgiving to you all and as always...you have my thoughts and prayers. Sherry
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Thanks Sherry, I guess we do what we think is right, I can't think any of us would chose to harm ourselves if we had known what the out come would be. Unfortunately for some there isn't a choice as to what kind of treatment they can have.
Take care. Deb