Big tumors and walking difficulties

[LizH]

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.

[LoriW]

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

[LizH]

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.

[LoriW]

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.

[Jim Scott]

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

[chrissmom]

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.

[nancyann]

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.

[LizH]

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!

[LizH]

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.

[Palace]

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

[LizH]

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.

[Windsong]

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.

[LizH]

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

[Crazycat]

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

[LizH]

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.