where to start? recommendations needed

[boosted3800]

Hello everyone!

My name is Ryan and 7 months ago I had surgery to remove a benign tumor in the midline of my cerebellum. I was hospitalized for nearly 4 months so my pt strengthened me to the point that I could just barely use a walker. After being home for 3 months I am now walkering on my own regularly and sometimes using a cane. Some things I have noticed about myself are :

I like to hyperextend my knees
I have a muscular imbalance
My balance is off; I like to rock heel to toe
My shoulder hurts
Half of my body feels weak

I have to put extra pressure to the 'weak' side to even out my hips (which also seem slighty weak)

From what I have read so far it seems that I have hemiplegia and very similiar symptoms to a stroke patient.

I do have two different physical therapists but they were chosen by my insurance company, unfortunately. When I mentioned 'hemiplegia' they both gave me the 'deer in the headlights' look indicating that they had never heard the term before. Obviously, that was pretty upsetting to me as I'm an extremely motivated 27 year old in average shape that is engaged to be married in a year and a half.
I have begun stengthening my scapular muscle to alleviate the tension in my shoulder and have always tried to use the best postur possible since I could sit up.

I am in the computer field and only have a very basic understanding of therapy and neurology. My questions to you are..

Am I right to think that my therapists are training me incorrectly in your opinion?

What should I do or say to my current therapists?

Where do you believe I should go from here?

Do you recommend any good books on the subject(s)?

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[Judith Mollet]

This is a bit tough for you I agree. Although the tumor was "midline" it may have involved surgery more on one side than the other to remove it which could account for asymetry in the symptoms, and your assumption of a "half sided" lesion. Did you ask the physios why they reacted as they did? Before taking further action how about asking? What sort of a "diagnosis" does the surgeon /neurologist involved describe your brain damage as? A physio should have heard of hemiplegie /stroke. Maybe they were amazed/amused/impressed by your selfdiagnosis? who knows if you don't ask?
I would be happier as a patient if the physios involved had had extra professional courses in neuro-physio since qualifying and /or lots of experience at the workplace in treating patients with a range of neuro disorders. Certain principles of neuro treatment have a wide range of application, whether it's stroke patients or post-op tumor, the catalogue of treatment is often how/what symptoms present and not alone on diagnosis.
I'd suggest you talk to your physios anyway on the matter. You could also ask your insurance about their criteria for choosing physio perhaps. I am not giving you any book suggestions as it won't help I'm afraid. You need reassurence and info from your physios and /or neurologist. There's info on the web but so much probably not applicable to you.
Hope you find a suitable solution!

[Gawaine]

you should talk to your PTs and find out if they have advanced neuro/stroke treatment knowledge... sure all PTs have been taught how to treat everything, but we specialize after leaving school........ sure a plumber can fix any leak, but would you hire a guy to fix your kitchen when he's been working on only bathrooms for the last 15 years...? you need to find a specialist... and if your PTs dont' have that knowledge, then you need to find someone else...

what really sucks is the insurance issue... it's also tricky because you're in a small town... you may end up having to go to toledo or some place for better treatment... too bad you're not closer to chicago... rehab institute of chicago (RIC) is the best in the nation when it comes to neuro rehab, particularly brain injuries and stroke...

my best suggestion is to talk to your insurance company about potential PTs... also talk to your neurologist... they may have some recommendations then you can talk to your insurance company to see if they're cover you... you'll probably find PTs who are more neuro-focused tend to work out of hospitals, particularly those that have inpatient rehab facilities... again, most small towns don't have that...


good luck!!


Patrick, PT

[boosted3800]

Well I took some of both of your advice. Hopefully, I am headed down the right track. I visited the physiologist who just happened to be the former director of Dodd Hall in Columbus which is one of the best neuro rehab facilities in the country. He recommended specific therapists for me here and I am also going to Dodd Hall soon.

After evaluating me he said that my issue was more with proprioception than anything and that my balance is related to proprioception?

Thank you for the help! Any further info would be much appreciated. I have been doing things like touching a limb then touching my nose, clapping, throwing a ball, etc.

[boosted3800]

Well I have about 2 weeks to decide where to go for neuro rehab. So far I have researched Dodd Hall in Columbus, RIC which seems very good, and Kennedy-Kreiger is MD which seems good too.


Anywhere else to consider for neuro rehab?

[boosted3800]

In two weeks I will be in rehab with any luck. Any last minute tips or suggestions?

[oc1dean]

If you need some reading on stroke recovery and neuroplasticity, which is the basis of all stroke recovery, try these:
Here are the books I've read on neuroplasticity.
The mind and the Brain : neuroplasticity and the power of mental
force / Jeffrey M. Schwartz and Sharon Begley.
Train Your Mind, Change
Your Brain: How a New Science Reveals Our Extraordinary Potential to
Transform Ourselves by Sharon Begley
The brain that changes itself : stories of personal triumph from the frontiers of brain science / Norman Doidge.
The body has a mind of its own : how body maps in your brain help you do (almost) everything better Sandra Blakeslee and Matthew Blakeslee.
Stronger After Stroke by Peter Levine.
The deer-in-the headslights look is extremely common for all stroke survivors because there is nothing on the efficacy of treatments, you may need to do all your research yourself.
Dean, stroke survivor