Movement disorder

[LizH]

Good Morning to you all. I am here in New Jersey, USA.
I have a movement disorder because of AN (about 3cm) which was treated using radiosurgery 5 years ago. The tumor has stopped growing but now I have difficulty walking. This happens only when I walk. Physical therapy exercises are not helping. The problem became worse greadually. I need help now. What can I do? My neurosurgeon says the tumor is pressing on the brainstem and should consider having surgery to have it removed but I need help now. I can't walk. Thanks. Effiya.

[pattibobatti]

Helllo,
  Of course you need help now. Research the web-site and get a good neurologist. Get the best information you can. 

Let us know what's happening.

Pattibobatti

[LizH]

Yes, I definitely need a good neurologist. I have seen 2 so far and in my opinion they are both doing nothing for me. I have had 3 MRs and numerous tests. They both prescribed physical therapy which is not helping me. I do the exercises religiously each day even at home. I want to be able to walk and walk well. Right now, I walk like someone who is very drunk but I don't drink at all.
Thanks, Patti.

[Battyp]

So it's the lovely walk you got eh?  Me too!  I hate being looked at like I'd come to church drunk on sunday 
I'd get another opinion for a neurologist who knows how to treat An's.  Not all do.  Have you considered sending your MRI's to house for an opinion?

[LizH]

Hi Battyprincess, Good to hear from you and thanks for your reply. So I am not the only one with this walking problem? Ok. I will contact the folks at Ear House clinic in LA.

[Static]

Hi.  I'm not sure where exactly you are in New Jersey, but I'm just across the river in PA, outside Philadelphia.  Although Phila is not a very desirable city to be in (IMO), there are excellent hospitals and doctors who have dealt with AN's for a long time.  I had mine removed at Jeff and I also hear good things about U of P.  Good luck to you!

[LizH]

I am in northern New Jersey, in a small town near Newark or north of Newark. Well, I have a brother in Princeton, NJ and he says Philadelpia is not far. I also need someone to help me with my walking problem. Thanks. I will chexk with the U of P medical school and hospital.

[Raydean]

If the walking difficulties are a recent problem and becomming gradually worse, has a recent MRI been done to rule out other causes such as hydrcephalus?  If this hasn't been done, a MRI or at the least a CAT scan needs to be done to rule this out.

just a thought.  Please keep us updated

Thinking of you
Raydean

[LizH]

I have had 3 MRIs since January this year. No cerebrospinal fluid. One of the Neurologists that I saw could not even find the cause of the problem and said that I am a "mystery".Then he suspected MS but later ruled it out  because all other tests gave negative results. Thanks for your suggestion.

[LizH]

What is "hydrocephalus"? Tks.

[pattibobatti]

Goodmorning

Any word finding a good neurologist?

Pattibobatti

[Captain Deb]

What is "hydrocephalus"? Tks.

Suggest you google it for a proper medical description of it--basically "water on the brain"--cerebral spinal fluid build up in the brain.
Capt Deb

[Captain Deb]

As for the "walking disorder" it sounds to me like your AN has finally impacted your balance nerve. Surgery won't "fix" this as the balance nerve is severed to remove the tumor, but your residual balance systems will compensate, depending on how hard you are willing to work at re-training them. I don't understand a neurologist seeing a patient with a 3 cm AN and "walking difficulties" a mystery.Am I missing something here?
Capt Deb

[Obita]

Effiya: Is it "tipsy walking - balance problems" or your legs just won't work?  Kathy

[LizH]

No, I am not tipsy at all. My legs won't cooperate. No pain but no energy to move my body. I sometimes walk like someone who is drunk even though I don't drink. Thanks.