ONE MONTH AFTER THE SURGERY OF ACOUSTIC NEUROMA

[Arasha]

Hi Everyone,

I dont speak English very well, but I hope you can understand me and support me with your comments.  I had a surgery of unilateral Acoustic Neuroma  (2.5cm x1.5 cm)1 month ago, the worst experience in my life, I still feel dizzy, have facial paralysis, noise in my ear which similar to have a cascade next to me, my eye gets dry frequently it is blurry all the time and I lost my hearing in one ear, can you tell me please your experiences with situations similar mine and when it is supposed I could get better specially with my face.  I live in Ecuador - South America and due to here there is not an specialist in this king of tumor I had my operation in USA with a doctor who made an Endoscopic Surgery, but I am back now in my country, the doctor resected ALL the tumor and even to my problems that I have at the present (depression also) I am happy to be alive.

Thanks in advance for your comments and suggestions.

Gloria

[Desilu]

Hi Gloria,

Is there any way that you can contact your doctor that you had in the U.S. and explain to him all of the issues that you are having? It may even be possible for the U.S. doctor to contact a regular physician (if you have one) in Ecuador and maybe he can give you some advice. One month out of surgery is not a long time. You should try to walk as much as you can to help your body re-adjust from the doctor probably severing your balance nerve from the surgery. The more you walk, the faster your body will adjust. A lot of times the facial paralysis is temporary but it takes time to heal. As far as the eye problem is concerned, there are many different types of eye drops out there to help lubricate your eye. You have to be careful not to scratch the cornea of your eye. The drops will help most of the time. I don't know what type of medical help you have available to you but try to call your doctor in the U.S. if at all possible. I wish you the best on your recovery.  ANN

[Arasha]

Hi Desilu,

Thank you so much for your reply, I am having eye drops for the day and for the evening as well , also I have patchs to keep my eye closed when I sleep.  I contact often to my doctor in USA but it doesn´t help so much, he said that my face will come back and I just need to wait. Advices from people that had problems like mine helps me more. Your advice about walking it is great. Thanks again Desilu. Gloria

[neal r. lyons]

Hello Gloria.  My name is Neal.  I had Translab surgery in June.  I was given some exercises to do two times per day for helping with balance, and recovery in general.  If you have back problems, of course you have to alter what you can do.  If you get dizzy during any of the exercises you are suppose to stay in that position until the dizziness goes away and then continue.  They are fairly simple exercises.  Here are some of them.  I hope they may be of some help to you.  1.Go from a sitting position to flat on your back(5 times)  2. Go from flat on your back to your left side(5 times)  3. Go from your left side to your right side(5 times) 4. Go from flat on your back to a sitting position(5 times) 5. From a standing position turn your head and shoulders to the right(5 times), then to left (5 times) 6. From a sitting position touch nose to left knee 5 times, then right knee 5 times  7. From a sitting position turn heade to the left 5 times, then turn head to right 5 times 8. From a sitting position bend forward 5 times 9. From a sitting position stand up straight 5 times 10. From a sitting position move heaed up and down 5 times 11. Sitting on side of bed turn head to left and lie down quickly 5 times, then turn head to the right and lie down quickly.  Buena noche, Neal

[Arasha]

Hi Neal,

Tanks a lot My eye, dizziness and the noise or my ear are driving me crazy. I will try the excersises, thank you.

Gloria

[lori67]

Hi Gloria.

It must be difficult to be far away from the doctor that understands the most what is going on.  Your facial issues sound very familiar to most of us, and a month after my surgery, I was feeling overwhelmed and depressed also.  The doctor is right though, with time it does get better.  It's not easy to be patient.

I had my surgery last February and it took until about month 6 or 7 before I noticed some movement in my face.  Some people get movement back sooner, some later.  I am at the point now where I can manage most of a smile, but still can't blink.  When I look back at pictures from right after my surgery, I can see that I look better and that makes me feel like things are getting better.

The exercises and walking should really help with your balance too.  Remember, it does get better!
Take care of yourself and get plenty of rest.
Lori
p.s.  Just for the record, I think your English is wonderful!   

[pattibobatti]

Hi there, Gloria

I cannot imagine how you must feel after the surgery living in Ecuador.  Thank goodness you have the internet and can learn how to get more help. 

You have only had one month after your surgery.  That is not a very long time.  Your body has gone through so much and you will need lots more time to heal.  And all of the things that you write about are very common.  If you can keep in contact with your doctor and let him know about your concerns, surely he or someone that he can recommend can help you. 

When I had my surgery, keeping in touch with this forum was so important.  They can help in every way. 

Take good care and remember you aren't alone!!!
Patti

[Arasha]

Lori Thank you,

Yes, I need to be patient, it is difficult but I will learn Before my surgery I didn´t know that I would have this, maybe it was my mistake not to investigate more so i could be prepared but as my husband said, what could be different or changed if I knew it !!, as always he is right!!!.

Yes, it is difficult to have the doctor so far, everyday I have a new question and I don't want to have a big bill with the phone co., sometimes I make a resume of all my questions and ask to the doctor but I cannot find him available whenever I want. Here in Ecuador this kind of surgery has not been practiced, consequently I dont have anyone who can help me.

I was a runner, 37 days ago, I run 13 or 14 races in a year  I run marathons and the advise of walking that I had from a person in this forum made me happy, so I am walking 45 - 1 hour or more  but I still feel very dizzy (maybe it is normal) did you experienced the same?, Besides, I realized that you had a BAHA implant, is it working well ? did you loose your hearing 100% ?. Three days ago I noticed that I can hear just a very very little bit with my AN ear, almost nothing. Do you think that after time should I recover more hearing??. I am sorry if I am asking too many questions, but better to know from someone in my similar situation. The Baha implant is on my mind and I was searching at the internet but all my questions are not solved yet. Here in Ecuador that kind of implant doesn't come yet, there is only a cochlear one and I dont like it.

Thanks again for your time,
Buena suerte con tu recuperación,
Gloria

PS thanks for your comments abt my English, It takes me a lot of time to write my posts but I know I still make mistakes, disculpa.

[lori67]

Gloria, it sounds like you were in good physical shape before the surgery, so that will probably help in your recovery.  Although sometimes it makes it harder to accept because you probably felt fine before the surgery and now you don't.  At one month, I still felt very dizzy and was not able to walk for an hour - so I give you a lot of credit.  Stick with it and I'll bet you'll see results soon.

I got the implanted part for the BAHA, but I have to wait 6 weeks before I get the external piece, so I'm not sure how it will be yet.  I've already noticed that I can hear when I touch the implanted part, so I think once I have the whole thing, I will be able to notice a big difference.  I lost all hearing in my right ear.  I'm not exactly sure of what method was used for your surgery, so I don't know if your hearing will get better or not.  Someone who has had the same type of procedure as you may be able to answer that.

Please don't feel that you are asking too many questions.  I ask a lot too.  We all do.  Unfortunately, even the doctors who do these surgeries can't answer all of our questions because I don't think any of them have actually had this surgery done to themselves.  Some answers are more helpful when they come from someone who has experienced these things.  We're all here to help each other as much as ourselves.

One of the forum members, Captain Deb, recommended walking on a treadmill to work on your balance.   You can practice turning your head while walking, walking backwards or uphill and you can hold on while you're doing it.  That might be something to try if you haven't already.  You seem to have a strong desire to get better, and that is very important!  It will happen!

By the way, I've always told my husband i wanted to move to Ecuador.  I love hot weather!!  Oh, and I still make mistakes with my English and my typing - and it's the only language I've ever spoken, so you're way ahead of me!!
Lori

[trhoads]

Gloria,

As mentioned before by others, I think we can all identify with what you are going through.  I had my surgery May 1st of this year.  I guess I was one of the lucky people and I got movement back to the right side of my face after 6 weeks.  However, I was working with a speech therapist, who was teaching me some exercises that I could try to get my face moving again.  The surgeon also put me on steroids to help with the nerve inflammation, which I think was a big part of me getting movement back as well.  I also went to physical therapy to work on regaining my balance.  I wanted to get back to "normal" as fast as possible, so I did not wait to start those things like the surgeons recommended.  I went to my family practitioner and got an order for those things from him instead.

As far as the dry eye and the constant "ringing" or whatever you want to call that awful sound always in my head----those are my biggest complaints (in addition to the headaches).  I use eye drops during the day, and I use an over-the-counter ointment to sleep with.  I am lucky that my eye closes now, so I just use the ointment and do not need the patch anymore.  But from what I have read elsewhere on this site, some people have had the surgery 1 or 2 years ago and are still having trouble with dry eyes.  I just went to an eye doctor about 3 weeks ago and had plugs placed in my lower tear ducts, which help the drops last a little longer, but I still use them every 20-40 minutes while I am awake.

As far as the BAHA, I had that surgery 8-20 of this year, and I actually got the processor connected 12-4.  It was not quite as dramatic as I thought it would be, but I do enjoy being able to hear a little better.  I really thought that the sound would over power that "ringing" and it really does not.  I told the audiologist that it was not working at all, and I did not realize that it was working until we put an ear plug in my good ear---then I finally realized that it was working.  I notice a big difference when I am listening to the radio or television, and it has also helped me hear in crowded restaurants.

Hopefully some of this information will be helpful.  I wish you the best of luck.  Keep us updated on how you are doing.

Tonya

[Omaschwannoma]

Hi Gloria,

Another vestibular exercise:  Stand near a counter or table for stability should you need it.  Stand with your feet apart (1-2 feet) and turn your head right to left for one minute.  Stop and recuperate.  Stand with feet same distance and move your head up and down for one minute.  Recuperate.  Stand with feet same distance and look up and to the right, repeat to the left side.  Once you are able to perform these exercises with confidence and stability, try something more difficult. 

Stand with your right foot in front of your left foot (so they are in line heel to toe).  Once you have your balance let go of the counter and turn your head left and right for one minute.  Remember to use the counter for stability.  Swith your feet and repeat. 

Try some deep squats if you are able to get that low without straining your back or knees. 

Perform "Tree Pose":  Standing on right leg, turn left knee out to the side and place left foot at the inside of your right ankle, calf, thigh or if you can higher on the thigh.  Straighten the right leg by squeezing the muscle and focus on a spot at eye level or out in front of you on the ground.  Hands can be in prayer to chest, on hips, or arms out to side, or overhead (looking toward ceiling more advanced).  Repeat on left side.  Hold for one complete breath working up to 5 minutes.  Keep the face, mouth, tongue, head, neck, shoulders soft.  Breathe slowly, fully during this posture. 

When the sun went down my husband assisted me in walking a straight line in the house without lights while turning my head as I was walking.  Another one is standing still and spinning around while keeping your head neutral (not down or up).  I did these and other exercises every hour for 6 weeks straight.  During the recuperating times after all exercises were performed all I could do was close my eyes and lie down until the bell would go off and I got up to do it all over again.  VERY BORING, EXHAUSTING, PAINFUL, BUT WORTH IT! 

Hope this and others help you out.

[sgerrard]

Hi Gloria,

I didn't have surgery, but I was just at a meeting of the local ANA group here in Portland, OR. There was a lot of discussion about balance issues. Everyone reported that walking and exercise were the best things for regaining a sense of balance and overcoming the dizziness.

One person there said that using a treadmill was a good way to exercise. Another said she would go to a shopping mall, or other busy place, and walk there. Even though it was more difficult, she said all the activity around her forced her brain to make adjustments faster, which helped her regain her sense of balance. A third person said following around a small child that was learning to walk was a helpful way to teach herself how to move again. We also had a demonstration of Tai Chi as a method of improving balance.

If there is any way for you to get in touch with other AN patients in Ecuador, it would be worth the effort. You always have this forum, and there are lots of people here who can share their experiences with you. But it is also really good to meet other AN patients in person - it is such a relief to be with other people with the same condition you have.

Best wishes, Steve

[Jeanlea]

Gloria,

One month is a short time after surgery.  I was running before surgery, but not as much as you were.  After 2 months I was able to hike 5 miles.  I'm 27 months post-op.  I started running again about 8 months after my surgery.  (It's too cold and snowy where I live to have done it earlier.)  Now I have no problem running 4 miles.  I'll be doing more.  Next May I'll be running a half-marathon.  Just to see if I can finish it.  I think you must be a much better runner.  That will certainly help your recovery.  All of the exercises everyone has suggested are great.  The more you move the better you will get.

After surgery I had total paralysis on my left side.  I had my first movement, muy pocito, after three months.  Now I can make a decent smile.  It's still improving.

Glad you found this site.

Jean

[Stevey]

Gloria,

I had my surgery (retro sigmoid) on Jan 31 of this year.  After 1 month I was nowhere near where I am now and you should expect that there will be small steps to regain your previous "life".  I could not imagine then that my face would return to a state where no one notices the difference and that my balance would improve to where I bike and ski again but carefully.  It must be difficult to be so far from your surgeon, but you are alive and your tumor is gone.  You have found a community here where people have experienced much of what you have seen and will see in your recovery.  There are some great people here just like you that have benefitted from expressing yourself just like you have.  My biggest nagging problem post surgery is the tinnitus and single sided deafness, but am excited about my transear which I am getting used to, but is helpful in hearing my wife and little girls better.  Be grateful for everyday!

God Bless,

Steve

[Captain Deb]

Hola Gloria!
Como esta? We would love to hear how you are doing. Please update us on your progress. I'm sorry I missed your initial post--you caught me off-line for a while.  If you are anything like me, your dizzyness will have gotten a bit better by now, especially if you have been able to get out and walk in your beautiful country. We all want to come visit you in Ecuador!!! What city are you in?

Hope you are feeling better and getting back on your feet!

Capt Deb