ANA Discussion Forum
Post-Treatment => Balance Issues => Topic started by: LizH on October 17, 2006, 05:35:04 am
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Good morning to you all. I read somewhere that big tumors, like mine, and especially ones that are pressing on the brainstem do cause walking difficulties. That is so true. I have so many difficulties walking. Physical therapy has not helped. Mybe I an not doing the right type of exercises. I am so frustrated. This has affected my quality of life and I can't get help from anyone anywhere. All I do now is to cry and pray.
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Good Morning,
  My tumor was large also, the size of a golf ball.  It was also pressing on my brain stem. It's been 2 years and I still staggar like a drunk. I try to climb over something, loose my balance and fall on my butt.  It is so frustrating at times. I just had my 2 year MRI back on Sept 25th, but I haven't heard back from my doctor. I guess no news is good news.
Lori
Arizona
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Hi Lori, Good morning. I experience sometimes what you go through too. But for me now I can't even move my body sometimes. What kind of treatment did you have? surgery or radiation? and where? are you doing anything about your balance pb? Thanks.
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I had the surgery - 13 hours, spent 10 days in ICU and 2 weeks in rehab. I didn't find this site until a year after my surgery. I would never have surgery again. I have the same symptoms as everyone else. Facial paralysis, dry eye, balance issues, so depressing at times. I live 50 miles west of Phoenix (Tonopah), so I was blessed to go to Barrow's. Before I was diagnosed, I was told I had a sinus infection and to take Sinaid for 2 months. I would probably be dead today if I would have listened to the first doctor.
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Hi effiya:
Sorry to read about your issues with balance.
I had a 4.5 cm AN tumor that very much impaired my balance and ability to walk anything close to normally ('heel-and-toe' walking was absolutely impossible) before I had it surgically removed, some 4 months ago. I had some brief physical therapy - post-op - at home (through the VNA) and my balance and abilty to walk normally returned fairly rapidly, for which I'm very thankful. I was very motivated and eager to return to 'normal' and was in excellent health before the tumor was found, only a month befor I had it surgically removed. I'm certain this all helped.
I have no advice except to never give up and keep working at it. I understand that AN post-op balance issues do resolve themselves eventually if you do the exercises and keep walking, no matter how awkward that may be, so please keep trying.
I wish you the best.
Jim
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Have you had your eyes checked lately ? I really believe that there is a relationship between your eyes and your balance. I keep a close watch on Chris ( as you all well know). His balance is pretty good and getting better every day. I'm sure he wants it to be better much faster but one thing I keep checking is his eyes. Sometimes we (old folks...ahmmm) have trouble seeing up close and also seeing far away and that could make things harder for you to adjust to your new balance system.
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Hi - I had my AN surg. 6/06, right facial paralysis and total hearing loss (hence the balance issue). My surgeon, Dr. Telischi, referred me to a Balance Center in Ft. Laud., Fl.,
I had my first eval. yesterday, 10/16, cause I walk like a drunk too!!! Maybe you can look into Balance Therapy - luckily my insurance pays. Best of luck walking the line, Nancy.
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Hi Nancy, Many thanks for your response. It's been very helpful. I searched for "balance therapy" on the internet and found out that the Neurosurgeon that I had been seeing here in Edison, NJ actually works at the institute that offers such therapy. That's where I had been seeing him, the JFK Neuroscience Institute, Anyway, I am going to Oklahoma now and I will try the place in San Antonio, TX. Cheers!
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Hi Jim, Many thanks for your response. I will keep walking. In fact, I have no choice, I have no car and I live alone. I live in a small town and many places like the bank, Post office, grocery store, library, pharmacy store are within walking distance so I walk to those places whenever I need to. i am surprised that your balance problem improved with surgery. I have been told by someone here on this board that surgery will not help me because the balance nerve is destroyed in the process of going to take out the tumor. Thanks. Cheers! Effiya.
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Question here:
I know you all can't answer this exactly but, I would like some in-put before, I go into CK. I spoke with the scheduling person a few days ago and now, it looks like they/Stanford people are looking at a possible earlier date for me.
When I had my radiation consultation the doctor told me mostly everything I had already read on the Internet about AN. I stayed up for months, day and night when diagnosed with this thing. I also was already on this forum before, my consultations. (both with the surgeon and the rad-doc) Oh and is it safe to continue with Fosomax if I'm going with radiation, instead of the traditional surgical approach? I know I asked the surgeon about the Fos-pill and he told me I was right in not taking it. I took one this morning as, I felt it was OK since I'm going with the CK. I hope that is right. I will try and get past the scheduling person and find that out too but if not, does anyone know about that bone building pill. There are problems with that which can be severe if having dental surgery and on that pill.
OK, can anyone tell me with a 22 mm size AN, when using the CK on it.......then after, will my balance get much worse and be permenent? What do I expect to be permenent after CK? Permenent is the "key word" here, for me. I believe it will damage what is left of my hearing on the right side, correct? (balance is important to me as, I have an extremely active life) I'm sure it is important to all of you. I live in the mountains and everything is on a slope! (my property is on a rather steep hill/mountain. I have the two extra large dogs and I was very active up until recently with the AN. (taking hikes up on thin trails with a BIG drop-off) I'm not taking those now for fear of falling off the mountains, etc. I would miss my youthful life-style as, I'm not the *sitting-type.*
I have the mega fullness in the ear, the stinging facial with tongue numbness, the tennitis, balance.....running into walls problem, bad headaches, rolling colored lines, eye twitching and almost all hearing loss on the right side.
So people, what will change for better or worse, *PERMENTLY* after CK? (or will life be left with what I have now?) From your experiences can anyone actually answer my questions?
TIA,
Palace
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Hi Chriissmom. Yes, I had my eyes checked by one of the 2 Neurologists I was seeing before. He suspected MS so he did a visual test on me back in June of this year and I passed the test. You are right, I don't feel right in my eyes. Maybe, I should have them checked again. I wear glasses but I use them for reading. I can see without them except when I have to read something. Thanks. Cheers! Effiya.
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Dear effiya,
I empathize with your walking/ balance difficulties. These things vary so much from one person to another and depending on the situation too (i.e. is the gorund level, is it dark, is one walking up hill or down hill, and also frankly, can one get from the bed to the bathroom? Many many people do regain their balance ability over time and do very well. I thought i'd share what my neurotologist told me a number of times over the years particularly when i was going through an acute vestibular eipsode and subsequent convalesence: it can take up to two years to regain or compensate for balance loss.And some people don't.
On the other hand, I cannot say enough about tai chi in helping one. I discovered that on my own a few years back and was amazed at how over time my balance did improve. I took it with an instructor who confided that a doctor was always trying to get some of his patients into her classes because he knew it would help them and she confided that she had some wonderful success stories. The thing about tai chi is that one can even do it sitting down and still improve balance. It has to do with training the mind to become aware of where one's body is in space.
I have many times when no one would think i had a balance problem now. I came a long way. I still can have problems though. But the vestibular system is a complicated thing and even the specialists don't have all the answers.
I will say that I have an abstract which i can't find at the moment that scientifically has "proven" the benefits of tai chi. I'll post when i come across it.
all the best,
Windsong.
Good morning to you all. I read somewhere that big tumors, like mine, and especially ones that are pressing on the brainstem do cause walking difficulties. That is so true. I have so many difficulties walking. Physical therapy has not helped. Mybe I an not doing the right type of exercises. I am so frustrated. This has affected my quality of life and I can't get help from anyone anywhere. All I do now is to cry and pray.
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Thanks a lot, Windsong. I have thought of taking Tai Chi lessons. I have only heard good things about it. I think what is hard ofr me now is that I have known about my AN for 9 years now but didn't have walking problems until about a year ago and it has gradually become worse. Cheers! Effiya
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Effiya,
It's not going to go away, regardless of what exercises you do. Get the thing removed and then begin a strict conditioning regimen. I was in excellent shape when I went down from my growth. I had been running 5 miles a day up to that point. I was staggering around like a drunk toward the end. I couldn't even walk down hill without having to grab hold of something to break my momentum. Oh, I'm also 49 years old.
I realize that I'm repeating myself, but there are many newbies on this site who have yet to see my MRI scans........
Paul
(http://www.mustangmods.com/ims/u/948/1254/51450.jpg)
(http://www.mustangmods.com/ims/u/948/1254/51451.jpg)
(http://www.mustangmods.com/ims/u/948/1254/51452.jpg)
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Hi Paul,
So did surgery and therapy help your balance/walking problem? You have no problems now? I have difficulty going downhill too. This has really affected my quality. Where did you have your surgery? are you happy with the neurosurgeons there? Thanks, Effiya.
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Effiya,
Yes, the surgery helped a great deal. However, there are still some residual difficulties with equilibrium, double vision and left-side impairment. For example, I'm left-handed and my handwriting has been severly compromised. I was an artist and always had excellent penmanship! The doctors say this will eventually come back and I can see some improvement albeit very slow and gradual. The key is to keep exercising the muscle and nerve pathways. My A.N. was on the left side. For some reason, I never had any headaches, before or after surgery. The most important thing that aided in my recovery was physical fitness. As fit as I was going in to the surgery, I was hobbling around on a walker for two weeks after I had it. I was in the hospital for two weeks and in a rehab hospital for one. I had outside physical and occupation sessions for several months afterward. Recovery can take up to two years in some cases. It can take that long for nerve pathways to begin working properly.
The surgery, although the after effects vary for everyone, can be very traumatic. It was the hardest thing I ever went through but it also made me stronger and somehow more developed as a human being. It also changed me physically. For example, I used to be extremely ticklish on my feet. Now I can receive full foot massages and not even bat an eyelash. Sexually, there have been changes as well - not that I particularly care being 49 years old. But these things are slowly returning. Not that this is a particularly pleasant topic, but for the better part of a year, my bowel movements were really screwed up. Two months out of the hospital, I had a routine colonscopy because it was the time to have one. The results were normal. Having been in the hospital for three weeks and receiving all that medication wreaks havoc on your digestive system to begin with, never mind drinking that horrible liquid for the colonoscopy procedure. That really did me in for a while! I was running to the bathroom 4-5 times a day for months. I'm now totally back to normal. It takes a while to flush all those toxins out of your liver.
Some people have difficulties with the facial nerve and facial paralysis. Others - like myself - have difficulties with the trigeminal nerve which is responsible for sensation. After my surgery, the left side of my face was numb. As if being shot up with Novocaine that never wears off. To this day I still chew on my right side and prefer to drink from a straw, although it is slowly coming back as the doctors said it would. After surgery the left side of my lower lip was like a dead, useless flap of meat; the left side of my head or scalp was completely numb and didn't even feel like it was my own. One day though, several months ago I reached up and rubbed my scalp and was thrilled to see that it felt completely normal. That's the way things come back : they're so gradual, they kind of sneak up on you. One day you realize, "oh, that's back" or, "I can do that again".
I had double vision for years before my treatment. Upon awakening from surgery - 13.5 hours!! - I was horrified to see that the double vision was the worst it had ever been! I mean, full blown double vision along with left-side facial numbness and deafness. I had to wear an eye patch every day for at least three months. But it did gradually subside. I still have a bit of it now. Then there's the incessant tinnitus. It's like the deaf ear rings to the point of vibrating all the time. Sometimes, it pulsates, like you can feel and hear your heart in your head. It's unnerving but very common among other A.N. victims/ patients.
What compounded my equilibrium problems was hydrocephalus, pressure from c.s.f. build-up in the cranuim. My tumor was so big that it was blocking the flow of the fluid. So, before I had the tumor removed, I had to go in for a shunt installation one month before. For some reason, it became dislodged over night and I had to be rushed back into surgery the next morning for a reinstallation!. Plus, I went into a coma from a bad reaction to the morphine.
Be prepared for bi-yearly MRIs to check for regrowth! My next one in early next month. That's four MRIs in little over a year for me!
But all this is particular to me. I had it real bad. I let it go for way too long. Others are in and out of the hospital in less than a week with smaller growths. My paternal grandfather died from a noncancerous brain tumor in 1941 - probably an Acoustic Neuroma. Back then, they didn't know how to deal with something like this.
I've been through so much medical stuff over the past 2 years, I have no qualms about taking care of what has to be done to stay healthy.
I remember thanking one of my doctors for saving my life. He looked at me and said, incredulously, "You would not believe the size of that tumor".
He went on to say that he did close to 50 of these surgeries a year and mine took the cake!
Take Care......Paul
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Effiya,
Sorry, I didn't answer all your questions.
I had my treatment at Mass General in Boston. The doctors there are top notch, world class and highly renowned. They are: Dr. Frederick Barker - Neurosurgeon and Dr. Micheal McKenna, Neurotologist. Here are links to their respective web pages:
http://www.massgeneral.org/doctor/Medical_Professional_Detail.asp?MPR=8956&ON=13957
http://www.meei.harvard.edu/shared/staff/otodocs/mmckenna.htm
My walking and balance is close to 100% to what it was. Granted, there are great doctors all over the world. In my opinion, you can't go wrong with those guys!!
Paul
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Hi Jim, Many thanks for your response. I will keep walking. In fact, I have no choice, I have no car and I live alone. I live in a small town and many places like the bank, Post office, grocery store, library, pharmacy store are within walking distance so I walk to those places whenever I need to. i am surprised that your balance problem improved with surgery. I have been told by someone here on this board that surgery will not help me because the balance nerve is destroyed in the process of going to take out the tumor. Thanks. Cheers! Effiya.
I believe that constant 'practice' cannot do anything but help your abilty to balance and walk normally, so I think you're on the right track.
To answer your question: I had the retrosigmoid AN surgery. To my knowledge, my balance (8th) nerve was not destroyed. I think that once the AN tumor was removed from the 8th (vestibular) nerve, that relief allowed my brain to re-adjust and so, I was able to rapidly regain my equilibrium and my ability to walk normally, again. However, the cochlear nerve was apparently effectively destroyed by the tumor, so my hearing never returned to the affected (left) ear. Well, you can't have everything. Fortunately, even though my tumor was large, the 7th (facial) nerve was only minimally affected: no facial paralysis, pre or post-op . I'm grateful for that.
In any case, if your vestibular nerve was at all compromised by the AN tumor, or your surgeon distrurbed it, that could be causing your balance problems. Of course, I'm not a physician so my opinion is as good as yours or anyone else's here. :)
Jim
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Paul,
That thing was tremendous. :o. All I can say - continue with your great recovery.
Regards,
Flier58
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Thank you Flier!!!
Paul
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Hi Jim, Many thanks for your response. I will keep walking. In fact, I have no choice, I have no car and I live alone. I live in a small town and many places like the bank, Post office, grocery store, library, pharmacy store are within walking distance so I walk to those places whenever I need to. i am surprised that your balance problem improved with surgery. I have been told by someone here on this board that surgery will not help me because the balance nerve is destroyed in the process of going to take out the tumor. Thanks. Cheers! Effiya.
The theory is that it is better to have no "input" on the affected side (surgically severed balance nerve) than have erroneous input on that side, as from a balance nerve that is being pressed upon by the tumor. The only walking difficulties I have are when it's dark or I am very tired or on uneven surfaces like hiking, and I have 2 telescoping hiking sticks for that.
Capt Deb
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Crazy Cat-
Great testimony Paul, I am about 10 yrs younger than you and am glad that I caught mine when I did. your recovery process seemed to be at least double than what I had to go through due to the size of the tumor. I have surfed websites of those about 10 yrs older than you and it is too large and they manage it where they can for quality of life issues-about 2 yrs after that though, death usually happens, I've surfed those dedicated to my wife sites (due to AN's) 8( sad stuff :-\.
I was doing the walker with PT only for one day out of the hospital. then, slowly over the course of 2-3 weeks learning to walk again, improving gait, without throwing up. I was very guarded at first, walking around with people telling me, MOve your Neck! you'll be permanently like that if you don't! I just told them to shutup.
I can now move my head around and swing it loose at times,
It still feels "floaty" though like an egg yoke in an egg.
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Having spent lots of time with Paul and to see how he is doing... well, all I can say is this.... you look at him, listen to him, see him in action and you have NO clue this man endured so much, is doing so fabulously, looks great (keep up those workouts Paul, you stud!) and unless he points out anything in particular, there is absolutely no way to tell this man went though so much with his AN. I've seen his MRI up close and personal (btw, the lighting at Dunkin Donuts really does help when looking at an MRI film) and for the massive growth he had.... I'm just in awe.
Paul, pls give Jody a BIG huggle for me... will save one for you too for the next bruch. Will book/organize it for when you are back.
Phyl
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I suspect that Paul's good recovery is not by accident .. Jogging several miles every day is a great help toward recovery ...
I was thinking the other day .. ever work a night shift :( or party all night :o .. the next night after you have been up for 40 hours .. you start to feel almost drunk your so tired...just like our AN balance issues .. I think they are the same! without the stereo balance, when we are tired .. we have balance issues .. the trick is .. build up your stamina .. don't be a couch potato .. its hard at first .. but it does get better!
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Hi
I had lots of balance problems / walking difficulties, especially in the 2 years after surgery....
I still have a less than elegant walk and I'm more or less OK in a straight (ish) line, but should I have to stop and turn then it's more fun... I shuffle when turning, and more or less turn on the spot....
This and other things from the AN removal have really affected my life which is slowly getting back together....
I am 4 years post op, and had the operation 6 weeks before my 30th birthday....
I had no facial palsey, which many people think is so lucky, and yes it is good however... because there are no obvious thinks wrong with me when you look at me, people just assume I am drunk.... only benefit is, that when I actually am, you can tell... there's always a silver lining...
My balance has slowly improved by my own hard work... I had no physio etc... by exposing myself to the situations where I had problems and just getting on with it.... I couldn't walk unaided for 7 months and even now need help in the dark... but I have found that being open about it and joking a bit about it that people are not so stand offish and wierded out by it, and are quite happy to help me when I need it.... because I have learnt to ask... which at the beginning I refused to do....
Anyway...
All the best....
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Hi
I had lots of balance problems / walking difficulties, especially in the 2 years after surgery....
I still have a less than elegant walk and I'm more or less OK in a straight (ish) line, but should I have to stop and turn then it's more fun... I shuffle when turning, and more or less turn on the spot....
This and other things from the AN removal have really affected my life which is slowly getting back together....
I am 4 years post op, and had the operation 6 weeks before my 30th birthday....
I had no facial palsey, which many people think is so lucky, and yes it is good however... because there are no obvious things wrong with me when you look at me, people just assume I am drunk.... only benefit is, that when I actually am, you can't tell... there's always a silver lining...
My balance has slowly improved by my own hard work... I had no physio etc... by exposing myself to the situations where I had problems and just getting on with it.... I couldn't walk unaided for 7 months and even now need help in the dark... but I have found that being open about it and joking a bit about it that people are not so stand offish and wierded out by it, and are quite happy to help me when I need it.... because I have learnt to ask... which at the beginning I refused to do....
Anyway...
All the best....
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Before I knew anything was wrong with my head, I noticied I was having balance issues when I was doing my form in Taekwondo. After I found out I had a tumor (mine was fairly large on my brain stem) I was anxious to get the tumor removed so I could get back to my routine. After 3 surgeries I was back to Taekwondo at 3 months. The first few weeks back in class was difficult and amusing. I was falling all over the place but my instructor taught me how to do my form again (having double vision I had to learn without seeing out of my left eye) and within a month I was almost back to normal. I believe (if your Dr releases you) that exercise is so important to your recovery process. I still lose my balance occasionally and especially in the dark but I attribute that to my hearing loss and double vision. Your muscles need to be strong and being flexible is important too. Check with your Dr but if he/she releases you to join a gym or take up martial arts, I bet you will feel better and see an improvement in your walking and stamina.
I am 48 year old female, average size but very active. I know not everyone may be able to exercise regularly but if you are able too, I encourage anyone (no matter what age) who has balance issues to work on muscle strength (that can be done with some kicks and squats), light cardio (fast walking) and stretching (arms and legs). Enjoy the sweat!
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I had a 3.9cm and also had severe walking troubles (like a drunk). I started by walking a little more each day, then going to places to hike to practice balance (but not on steep hills or cliffs!), and also got back to my Tai chi class as soon as I was able. All of this was recommended by the physical therapist I saw right after surgery.
All this was really helpful. Most of the time my balance is quite good. It gets flaky if I have repeatedly not had enough sleep, of if under the weather, or too many days in a row without excercising.
I see it as sort of a blessing, because I love movement and know it is good for all over health. It is too easy to get out of the habit. Having the balance issue in the background makes it a "necessity" for well being.
Kate