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Changing NS
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Changing NS

IS there anyone on here that has had their surgery performed by one NS and wated to change to a different doctor afterwards?? My followup care is lacking the care part,apparently my pain and problems are not a concern...  im just not sure what to do. emails and phone calls havent done anything.. even the NL on his team that is supposed to be my neuro, isnt helping me any he acts like im just not his patient. and im starting to think that finding a new provider is the answer, unfortunately...
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620923_tn?1405964489

  Hi...NS's do not offer after care....only post op to check on the incision....and depending on their standards, u go for follow ups and get a MRI...after that u need a NL.

I had a tough time finding one in my area as I traveled to my NS, and my PCP was willing to learn about chiari so I just go to him....

  Remind my chiari brain how long post op are u?



    "selma"
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1571533_tn?1322947109
10 months on the 9th. i only saw the nl at tci once and he wasnt very helpful, or nice.. i have no desire to drive 12 hours to see him again. As far as i have been concerned, the only one who has even adknowledged my pain is the NS.. the NL wont even return my stuff, and the "nurse" onh my case tried telling me i wasnt his patient...
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620923_tn?1405964489

  So u have ur 1 yr post op coming up, are u planning on not going?

This is so odd...I know the times I went I saw 2 diff NL's and the last one I saw is no longer there....and he wanted me to see an orthopedist there, never heard back, now I know y, he is gone...that was my 1 yr post op visit....

So r u referring to Kula>?...I saw him the first time I went, not the second....seems he does not do follow ups...lol..

DId u ask ur case nurse who u should be seeing then and how to go about it?.....

  I did not have this issue, but had a diff NS....sorry u r having a rough time dealing with them, but I really feel it is the office staff....

I would call until u get an answer as to who u can see...and when.Since it is so close to ur 1 yr mayb they would do it early?

    "selma"
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1663373_tn?1333639589
wow wedid have our decompression on same day, my ns didn't even want an appt after 2 mo and I have to tell you I am glad I went to dr oro for second opinion you need someone that has your needs in mind, I truly feel for you and pray you find someone else that can give you answers. Hang in there not sure what you should do buy might get a different ns input.
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1823499_tn?1370093889
Hey there my ns didnt care to hear about my issues i am still having either. Just you are doin good csf flow wise see you in 6 months. So they are sending me to a nl in ann arbor in jan. So hopefully i can count on him for more help. I am being sent to therapy and work strengthening to try and go back to work because i couldnt handle it on the 22nd whhen i went back. When i called my ns to be put back on sick leave for therapy they acted lile it wasnt their issue to deal with but said they would do it. Huh wonder if tjey didnt thats why my claim closed? Gotta call bunch of places to see whats goin on. Could lose my job over this crap. Sorry got off topic a lil. Lol tjats chiari for me

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1903798_tn?1333908888
Will your pcp do the paperwork for work?
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1571533_tn?1322947109
selma- yeah im referring to dr kula, and my nurse is june taylor.. but i have no way to get ahold of her and ive left her dozens of messages. maybe email is the way to go, but the only reason i even got my ns email is bc i got it from someone on here.. i saw dr b at 3 months post op n he said if my mri looked ok, which apparently it does, he didnt want me to travel for my 2 yr appt, to do it over the phone.
cash, ya i know :) and i do need someone who gives a crap about how much pain im in. its beyond rediculous, nad theres nothing  i can do about it.. my mom is stressing herself out, she so upset by it, and she deosnt even know what i really feels like.
sexy, thats what mine said.. they didnt even care that i was having probklems getting my mri! i didnt get me mri until october!! 5 months after i shouldve gotten it!! when i emailed my ns i mentioned disability, i cant work, im worse than i was a year ago, and the pain is the main reason why i had the surgery to begin with.he didnt say anyhting about the disability, cuz ya know your drs have to back uo the claim, and my pcp is acting like the fact i can hardly get up n do **** is just a-o-k.
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1823499_tn?1370093889
My pcp is the one person whi understands my pain. He told me its not wise for me ti do any type of physical work. No lifting no bending anything of the sort. So im pretty sure he will back me on the disability ordeal. Its all a pain in the head isnt it. Lol gotta try to find a lil humor in this whole mess. I wish you luck. Keep me updated please. Somethings gotta go our way soon i hope
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620923_tn?1405964489

  Do u mean 1 yr post op visit, not 2 yr?.....

hmmm well again, I had a different NS...so not sure I guess they are all different...but as I said I had Kula my first visit, but a Diff NL the 2nd time and now that Dr is no longer there.....I will most likely go to a Diff location for my other issues as they are not their specialty up there....but I really had a great experience with my Dr....and suggest u get a hold of someone willing to see u about this issue....it has to be another Chiari specialist as many NS's will not touch someone that has had surgery already....do not lose hope tho....there are Drs out there that will help.

Like Dr Henderson in MD.....I have been hearing very good things about him
and it may not be that far for u to travel.....

  U need another Dr

   "selma"
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1571533_tn?1322947109
oops, ya i meant 1 yr.. I knwo i need another dr :/ .. i jsut honestly dont know wat to do, i had 1 nl tell  me that he wont see me bc i had surgery at tci not in pitt. im ready to go see ANYONE who will help me with this pain.. its seriously gotten tot eh point it controls my life....
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620923_tn?1405964489

  Try Dr Henderson...in MD....he has offices in Bethesda and Baltimore I believe...research him.....

Post op u can weed out NS's that are not true chiari specialists as they will not touch u unless u haven't had surgery...a chiari specialist will.....

Worth a try.....
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1571533_tn?1322947109
thanks :)
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1306714_tn?1327260680
It has to be hard not knowing where or who to turn to.   I completely understand your pain.  I was also like this a month ago, but for me I have to say the TENS unit has helped me.  It took down some of the swelling and with that some pain.  I can actually think about other issues instead of the pain all the time.  When you have pain in the brain it is all the body can think about.  Other's just don't understand.  I pray that you find the answer's to help you.  Ask about a TENS unit if your in therapy.  It wouldn't hurt to ask.  I know for me it has helped.  With that it mean's there is hope. I've heard good and bad with the TENS, but I'll try anything to have 1 good day.  Let me know.  
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1571533_tn?1322947109
I have a tens unit, Empi brand, and the Tens was amazing before my surgery, but now i only use it if i notice my shoulders or back getting that tight burning feeling, because although it feels SO relieving when its on, when i take it off the pain is right at aquare one..
And no people dont understand, my boyfriend broke a rib this past week, and even though he is in a lot of pain he can still go about doing most ofhis normal stuff... but its different wehn everytime you see a odd light, or hear something loud, and dont get me started on my superhuman sniffer, it makes it worse.. ya, his rib hurts when he moves wrong or touches it.. but its not the same.. he can get a few hours with no more than a few twinges, im lucky to be pain free long enough to shower, or go tanning, which i love to do.. or even workout- which i tried restarting in sept adn my headaches overwhelmed me.

TBO- i was actually wishing they would find something on my MRI.. that way there was something wrong and i could get some attention from a dr, any freaking dr would do at this point...
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620923_tn?1405964489

  IMHO working out at this point may have been too soon, try the exercises I am posting on Wednesdays, they are very tame, but meant to slowly build stamina with out over doing it....

I agree u need to ne seen by a diff Dr.....and understand the tens unit not being a good idea, u can get used to the pain, but to reduce it or get rid of it short term and then bam u have it hit u all over is harder to deal with....

  U just may need to go slower....and find another Dr to see y u r having this pain.


   "selma"
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1571533_tn?1322947109
i think it was a big mistake trying to work out in september, because its only gotten worse since then, and i was kinda feeling ok at the point i did it.
i wish the tens worked, and it does, but the 20 mins of relief just doesnt seem to be worth it, since i have no relief that stays after i take the pads off.
Im going to attempt to see Dr stevens in erie at upmc hamot, shes new, and was mentioned as a NL in the article about the new chiari dr in erie i told you about. im also going to try calling a few different pain drs tomorrow,and ask the receptionist to take down my problems, and to call me back after theyve talked to the dr, or for the dr to call me back, that way i dont waste my time seeing another dr who wont help.
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1925822_tn?1333709217
Hi,
I can totally understand u want to change ns.sad but true most of the ns are done when ur wound is healed.i also wasnt lucky till now with the knowledge of my doctors.i actually consider going back to germany where i come from and act there.i will fight till i get better and i know that ive got a long way to go...change when u r not comfortable until someone gets what u r going through and listens...u will get there i am sure.patience patience patience....although i hate it...thats what we need to have
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1925822_tn?1333709217
Hi,
I can totally understand u want to change ns.sad but true most of the ns are done when ur wound is healed.i also wasnt lucky till now with the knowledge of my doctors.i actually consider going back to germany where i come from and act there.i will fight till i get better and i know that ive got a long way to go...change when u r not comfortable until someone gets what u r going through and listens...u will get there i am sure.patience patience patience....although i hate it...thats what we need to have
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620923_tn?1405964489


  Sounds like a plan.....

  I understand how u felt in Sept....it is how most feel post op...able to do nething and everything, I always warn against it bcuz it can cause set backs....and then no one understands what is going on...u have to move forward slowly....and it is difficult to do, I know, but...we all have to slow down!


   "selma"
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1759188_tn?1324681908
  ive been to 37 doctors, i will keep going till i find the right one.  my fingers are crossed i found him
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1571533_tn?1322947109
why have you been to so many?is that number of one specialty, or is it pcp, nl, ns and others combines??

Ive been to 16 primary dr's- one is my pcp ive had since i was about 13 and 1 before that here who told my mom i was just a teenager-when we started the chiari journey, but i lived in virginia and nevada, and racked up 2 in LV and 12 in VB trying to find a good one

Neurologists-ive been to 14. 1 in LV, 4 in VB, 5 in Pitt-1 of them a ha specialist not a nl, 3 in Erie, 1 in NY

Pain drs:4, all in erie- 1 treated me like a drugaddict, 2 refused to see me and 1 wanted to do 1000 tests, instead of treating my pain.

lucky me only ONE NEUROSURGEON
- not including gyn, weight loss, derma, and others...


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1571533_tn?1322947109
I dont know why.. i think i talked to you about how much pain i was in in the hospital, and after i got home.. it was HORRIBLE. when i was in the hosp after my stay i actually said over n over i wished i never had the surgery, most people talk about how good they feel even though theyre in pain, but i could hardly move, and when i did.. it was horrendous. and the pain dr i was seeing2 months postop- the one that said iw as a drug seeker bc i asked him once to try the next does instead of another med, and kicked me out of his practice while i was on fentanyl for a pos drug test when he rx the drug for me- didnt really want to do anything to help.. it was like ok next drug combo.. then in august- 7mo- i started having more good days, and being able to do things, be more active without reprocussions. so i worked out for 3 weeks, maybe 4.. and the last few days i went to the gym, i started getting headaches after, so i tried every other day, then it just all flooded back. i only did an Arc trainer and Bike, no weights, no treadmill (bc i have a "bouncy" stride, not a rolling one)
and thats where ive been since.. it actually seems to have gotten a lot worse the last few weeks, im getting the pressure again with the all over pounding on top of the headaches n pain now.
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620923_tn?1405964489

Hi, sorry somehow I missed this post.....when u have pain like that post op it can be a few things, a leak, an infection, or u may have developed a condition post op that may have developed regardless, and having surgery was a good thing....
and the other is cerebral ptosis...

Something is deff off with u and needs to be checked.
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1759188_tn?1324681908
  ive been to sooo many coz like you  i was accussed of drug seeking, not too many doctors know about chiari and because i have a lawyer, doctors tend to believe your faking. i don't believe you can fake this pain or life of chairi.  ive been thrown out of a couple of doctors office, it seems as though doctors don't understand you want to feel better not there drugs. i had my old pcp tell me i was too young to be addicted. i am 50 yrs old. well in that case i am to young to be in this much pain !!  i use to go to the gym every day before my accident, i worked 2 jobs as a nurses aide, i worked for 5 months after the accident and when i fell off the treadmill and almost went threw a window with a patient i relised it was time for the surgery. now the dr's are telling me im too fat and i should exercise, well i will, it's painfull, it takes alot out of me,  but i do it.  i don't know if it's the rite thing but i am following dr's orders.  i am waiting to see what this new doctor say's.  i walk a mile, do the bike for a mile, and do some leg exercise
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