why ami in aqua therapy?

[Mrsboone07]

i found out whats wrong with me. but my doctor wont correct the problem he has me in aqua therapy. please tell me how dose this help. im in more pain after then to began. my hands and my legs burn. plus for years ive never had a problem with swimming now its a issue for me. i was in the pool about a week ago and i went under. for a second i blacked out and the headache was sooooooo bad i had to end my day in bed on topiramate ... 50 mgs... the thing is when they start they dont stop.and they are so bad.. omg.. i cant do anything... i really need a doctor to take my condition serious and offer me some ways to fix this .. im 31 i can barely walk. i have a walking cane i have so many restrictions at work . that its causing problems ... i can barely do anything. i cry so much im so sad . this has been going on for years and i never knew what was wrong now i do and no one will help me. i just want my life back. no dizzy spells walking without falling holding my cup then it falls out of my hand for no reason. headaches my lower spine is poking out its swollen the pain is so bad. i hate living like this i cant take it anymore. people look at me like look at that young girl with a walking cane or look at that young girl in the scooter shopping. i leave from the store in tears i feel like my life is over....
i need help ..... please help me.. i need to know what to do next..

[selmaS]

  Hi...how ur legs felt getting out of the pool is normal as the warm water will cause ur legs to feel very heavy like u can  not move them  after exercising in  it...I also had that, but I was told to expect that.

I am not sure y they felt it was dangerous for u to go to aqua PT??

   Please explain this further....

     "selma"

[Mrsboone07]

hello selma i tried to contact a few of the doctors from the list but im on medicaid and they dont take it. but i saw my doctor and he takes me out of work until i see a neurologist instead of another NS.. because the ns thinks that the chiari is not causing these problems. but my doctor knows that the chiari is because looking back at the past few years ive been in the hospital for the same things and i never knew it was the chiari .. the thing is its getting worst and now im walking with a cane and some days my legs go out for hours at a time.i go for another mri tuesday and its for my lower spine ... i just want my life back .. its like ok we have found out what i have now lets fix it .. when i went for my final apt with my aqua therapist she said that any therapy for a person in my condition is dangerous. land or water.. and that she dosent know what my doctors are doing but they are wasting time because its getting worst not better and she feels as if she did for damage than she helped me... when ever i got out of the pool i couldnt walk my legs would feel as if they was on fire and beaten badly .. i woulf have to sit down for about ten mins before i would be able to walk enough to leave. and i would be in so much pain. now my hands have started to hurt really bad again.. and im drop stuff more just when i thought that part had stopd wishful thinking.. anyways let me know your thoughts..

[selmaS]

  Hi...the swelling at ur lower back is most likely due to the tethered cord...most will have a cyst at the tethered site...they  can become infected.....I had one that actually popped and leaked...yuck....and I had to go on antibiotics to prevent infection.

That was 3 yrs ago and I am just beginning to have issues with my lower back  again to the point where I can not stand it...so I know I will soon have to have it looked at again.

If u do indeed have TC and chiari I do not understand the aqua therapy....

  U need to make sure ur Dr is a true chiari specialist...and to locate one u may have to travel...look at the link I posted  and see if  u can locate another dr for a 2 nd opinion.

    There is hope...read the poem at the top of this forum by Dr Oro.

     "selma"

[Mrsboone07]

my dx is chiari 1 malformation. my Ns thinks i have a tethered spine. arthritis was found in my forth and fifth lumbar . my lower back is swollen it sticks out. today i go see my aqua therapist and see what her final thoughts are. then i have an apt with the doctor on tuesday to see what he has to say. im not going to lie to you im loosing hope.

[jacmurphy]

Hi.
Welcome.
I'm sorry you are having so many problems. You'll probably find you have a lot in common with the people here.
Try and keep your spirits up. Concentrate on the things you can do and work towards finding that specialist who can help with everything else.
I'm taking it for granted you are in this forum because you have a diagnoses of Chiari. Well chiari can effect your emotions. You'll see so many people here say they cry for no reason.
As for the looks you get from people... I bet it's not as many looks as you think. There'll always be one or 2 people who give that 'poor girl' look. But if you look.. you'll find that most people are so busy with their own lives they wouldn't even notice if you were naked on that scooter!!
Take care, praying that we all find the doctors we need.
Jackie.

[selmaS]

  Hi and welcome to the Chiari forum.

There could be a few reasons u r in aqua therapy...one, ur Dr does not know how to treat u, and 2 has not come to believe ur dx.

May I ask what u were dx'd with?

Do u have chiari?...tethered cord?....ne other related conditions?

The best thing u can do is get copies of  ur MRI's and get a 2nd opinion.

Even a chiari specialist may choose to do some PT b4 finding surgery as a way to treat u.,.,, they need to know that the benefits out weight the risks.

  We do have a list of drs that u can use to research, as it is not a referral-http://www.medhelp.org/health_pages/Neurological%20Disorders/DOCTORS-LIST-FOR-CHIARI-SYRINGOMYELIA/show/1062?cid=186

  Know, that u r not alone.
   "selma"