Hello- i was MIA

General What's New With You?
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hello again all its been quite sometime since i been here actually i can not remember when i was here last..

life sort of took over- since being here i have met in person a fellow chiarian which is really nice to meet someone else in person who has the same condition i have, I am sure some of you know what i mean. Not an awful lot has changed with me medically well i guess that is still correct- lol-

I am in still pain management but am getting frustrated with the lack of continuation of "healing" and the lets continue the drug route- i want to see some progression, and i am feeling quite frustrated with not seeing that in pain management. they have in the past given me some steroid shots some of which helped others that had not helped and have made things worse. i continued on this avenue with pain management without a neurologist but continued on my search for one who actually understood both chiari and hydrocephalus and just when i thought maybe i would not find one within this state, i went back to my insurance companies website and matched it with the reccomended hydrocephalus neurologist boards site and low and behold i found one, i researched him and i was lucky to find one, made an appointment with him and granted he was a little confused as to why i was there-after explanation- he was really of great insight to me and of great help- he has given me some great hope for the future. He has also explained some things to me that up until this point have been totally ignored by all other neurologists and neurosurgeons OTHER then the one who done my Decompresson, so it is Confirmed I do infact have cervical stenosis. I do still have issues with the shunt, air pressures really cause me problems so i still havent come to a happy medium with that. And I do still have problem with my left shoulder and my neck still bothers me (which is what pain manahement is suppose to be helping with) And i do still suffer with tremors,confusion, tiredness. I lost my ability to do craftying the way i use to do,so when my eyes and hands cooperate with each other i try to do something simple.

on the family side of things: in June we went back home (drove) and hit a deer (darn animals) but made it there; my 2nd youngest son graduated high school! got van fixed thankfully insurance didnt total the van weewh dodged that bullet. In October my step daughter got married- her and her husband bought a beaautiful home in the burbs..lol..a bit to close to the MIL if you ask me but atleast she isnt my MIL haha ;)

other then that- life is a journey i continue to walk some days slower then others, and some days just a bit more confused..yet a walk i make slowly hopefully with steady hands! haha ;) hope you all are well... take care..Lisa

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had an mri strictly on my shoulder and today it is so sore i can barely move my arm and neck

oh the mri machine was a bit wider and more like a ct machine and comming from a clausterphobic,with great care and concern from the staff i did not need meds :)

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Hey Lisa,

So good to 'hear' from you.....Boy, you've had a lot going on....

Your new NL sounds like he may be a keeper!!! Keep us updated on that.

As far as the pain management doc....is he/she helping at all???? I ask this b/c I am working with a Physiatrist now...for mths now actually.....a physiatrist (sp) is a rehab doc...they work with folks like us..pain, deficits...(for instance, I have balance issues, from frequent falls mths back..I still have issues with pain , weakness ect...on my left side..mainly the pain is where I fell...on my left arm..I feel hopeful that I am on the right track with him....Just wanted to share that with you..b/c many people have never heard of this type of doctor..me included.....the ortho doc sent me to him b/c of all those falls.

So happy you are back here...keep us posted...

Peace,

Lori

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still involved with pain management but as far as helping if giving more medication is helping then yes she is helping, however her idea of helping and my idea are at two different ends of the spectrum. I dont want to just up and leave pain management because i dont know what that will do if i do find out i do need them in the future,being it seemed like it took a college application to get in there and pretty much signing my life away like i was getting a car loan--lol-- and being my primary doctor is a weeney and doesnt want to perscribe me even an asprin without going through pain management (example only lol) I just want to leave there the right way. So I am hoping this new neruologist is the right connection for me. like i said all they had done for me in the past was steroid shots which well didnt exactly have the best outcomes especially when they did the ones for the headaches in the base of my skull.

My biofeedback lady did talk to me a bit about seeing a Physiatrist she spoke to my pain amangement doctor but it never got beyond that. I am glad you are finding some relief from that though.

Now that I have my laptop set up the way I like now i might not forget to check in LOL ;)

have a great weekend all

~Lisa