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chiari, disc disease or babesia? please help me
I posted in the lyme community, neck back, and lastly iam here for answers about Chiari....Last June seemed the end of my life and beginning of hell....coming home from family trip..i started having major health issues plus neck spasm head pressure..etc.. too long to list..in and out of hosps..w/ 10 pain...till they found I have a modest chiari formation...herniated cervical discs c34 not too bad..c6c7 same..but bad one at the c5c6 level..but i have NO arm pain..so the docs are leary about surg. ...and say w/ the chiari malforamtion..i still have alot of room in my brain so it does not interfere w/ my cervical spine.......................
Then i was diagnosed w/ Babesia a lyme parasite disease....iam now being treated for the disease..but my lyme doc and the other nero's do not believe my neck issues are from that?..yet they can't tell me what it is from???My symptoms are full severe necks spasm for 8 months in the neck to the brain stem and up...they say my neck is protecting something in my spine holding up my head by muscle spasm....and i have pressure around neck back of head around ears..eys bridge of nose....etc.....at first i never had any neck spasm I had some type of intercranial pressure....horrid and i never had a headache before..but this was pressure...now that is gone...iam left with 24/7 neck spasm presure..that is so severe I can't hold my head up sometime...goes into my head badly.........................Does anyone have this w/ chiair?????? After being told there is alot of room in their brain..2 nero surgs told me it is NO big deal...it maybe disc or lyme....but now they change their mind...when they felt the back of my neck last visit..they said they never saw something this bad...NO MEDS take this away...please help me..i cant take it no more..................
Then i was diagnosed w/ Babesia a lyme parasite disease....iam now being treated for the disease..but my lyme doc and the other nero's do not believe my neck issues are from that?..yet they can't tell me what it is from???My symptoms are full severe necks spasm for 8 months in the neck to the brain stem and up...they say my neck is protecting something in my spine holding up my head by muscle spasm....and i have pressure around neck back of head around ears..eys bridge of nose....etc.....at first i never had any neck spasm I had some type of intercranial pressure....horrid and i never had a headache before..but this was pressure...now that is gone...iam left with 24/7 neck spasm presure..that is so severe I can't hold my head up sometime...goes into my head badly.........................Does anyone have this w/ chiair?????? After being told there is alot of room in their brain..2 nero surgs told me it is NO big deal...it maybe disc or lyme....but now they change their mind...when they felt the back of my neck last visit..they said they never saw something this bad...NO MEDS take this away...please help me..i cant take it no more..................
sorry for what u and all of u have been through....yes the nut house is where i would land next ..sometimes i want to be put in one..or a nursing home....since iam a burden to my family paretns etc....and most times i dont have the strenght to fight or figure this out..but i know im smart or was smart ... 8 months ago i was on top of the world...NEVER suffer anxiety depress...yes overworked w/ school and raising a family..but who isn't?..It pisses me off..when people say..oh your just stressed...THIS is only thng that has ever stressed me...and ive been through alot of sad crap in life...but i survived somehow..but this it is insane
if God grants me the courage wisdom and strenght i'll figure this out.....or die trying...I will fill out the papers for the institue. and see a real doc...guess u gave me my answer...but i do need coping skills...how to deal w/ neck head spasm and pressure .....nothing works...for me...and i tried it all...i think?..is anyone in pain 24/7 is there ever a break? Ever and end to this madness....will i ever feel like i did...??
All i hear w/ this chiari...are horror stories
if God grants me the courage wisdom and strenght i'll figure this out.....or die trying...I will fill out the papers for the institue. and see a real doc...guess u gave me my answer...but i do need coping skills...how to deal w/ neck head spasm and pressure .....nothing works...for me...and i tried it all...i think?..is anyone in pain 24/7 is there ever a break? Ever and end to this madness....will i ever feel like i did...??
All i hear w/ this chiari...are horror stories
Feel free to share this post with your family.
I've dealt with some of these symptoms all my life. At 8 yrs old the school sent me home repeatedly, the dr told my mother in front of me that I was making up the symptoms. In the last year I've had 3 ns and 1 nl tell me in front of my wife that I was making up the symptoms. They submitted that every vert in my neck show significant signs of stinosis {sp?} but said that would not cause my claimed symptoms. They threw me in physc ward as they could not explain my symptoms. After the ward released me in 2 days saying I did not need to be there and didn't know why I was sent down there... then I lost it! My temper that is. Told my PCP he was 'going' to send me to the Cleveland Clinic so they could find out what's up. And informed him that 'he did not' have my consent to share any of his current records with the clinic as I wanted a fresh start. After years of incompetent yookles fumbling around like Barney Fife it took only 4.5 hours from the time I arrived at the Clinic until the time we had a dx. They did note the neck problems as well but the NS there seen Chiari as the cause of the neck problems.
story goes on but... In your case, IMHO you haven't been seen by a Dr just yet. An intern who used to work with Chiari is 'not' someone who is knowlegable enough to dx you. That is like having someone who paints cars dx why your engine runs rough. Or someone who makes thread in a factory dx why your sewing machine keeps breaking the thread.
Above all, keep your head up. Don't give up and no matter how frustrating it seems keep pushing for an answer. It maybe a dual answer but get it from someone who knows. JMO
Wolf
I've dealt with some of these symptoms all my life. At 8 yrs old the school sent me home repeatedly, the dr told my mother in front of me that I was making up the symptoms. In the last year I've had 3 ns and 1 nl tell me in front of my wife that I was making up the symptoms. They submitted that every vert in my neck show significant signs of stinosis {sp?} but said that would not cause my claimed symptoms. They threw me in physc ward as they could not explain my symptoms. After the ward released me in 2 days saying I did not need to be there and didn't know why I was sent down there... then I lost it! My temper that is. Told my PCP he was 'going' to send me to the Cleveland Clinic so they could find out what's up. And informed him that 'he did not' have my consent to share any of his current records with the clinic as I wanted a fresh start. After years of incompetent yookles fumbling around like Barney Fife it took only 4.5 hours from the time I arrived at the Clinic until the time we had a dx. They did note the neck problems as well but the NS there seen Chiari as the cause of the neck problems.
story goes on but... In your case, IMHO you haven't been seen by a Dr just yet. An intern who used to work with Chiari is 'not' someone who is knowlegable enough to dx you. That is like having someone who paints cars dx why your engine runs rough. Or someone who makes thread in a factory dx why your sewing machine keeps breaking the thread.
Above all, keep your head up. Don't give up and no matter how frustrating it seems keep pushing for an answer. It maybe a dual answer but get it from someone who knows. JMO
Wolf
COMMUNITY LEADER
well an intern doesn't a specialist make...so u had some info from some one that had a bit more time around chiari than ur dr, but that does not give him the authority or make his comments right. I am sorry, but some interns r at diff locations for a week and then they move on....do u know how long an internship it was?
I am not saying this dr or soon to be dr is not good and has not idea about chiari I am just saying, I want a experienced dr.....and ur family do they realize he was an intern?
I am not saying this dr or soon to be dr is not good and has not idea about chiari I am just saying, I want a experienced dr.....and ur family do they realize he was an intern?
went to ny and my (nero)doc took on an associate that use to intern at the chiari instit....he told me he wanted him to see my scan for his opinion on the chiari...and that is when he told me the disc looked much more sig...then the chiari ..get treated for bab's neck fused...then he would reopen the chiari to see what symptoms i have remaining??? OF course he told this in front of my family .."put the chiari out of your mind,"...that's why they r upset w/ me since i didn't take doc's orders...but i was told the same w/ lyme...and yes it wasn't lyme it was babesia....last night i slept on traction pillow for neck..but it only caused pressure in my head...never ending..tks fot lending an ear
COMMUNITY LEADER
So, u went to TCI in NY? and that is where u saw a intern?...that seems odd.....
I know how frustrated u must be and feel free to vent...I would say everyone here can relate to what is going on and the fact that u do not have the support from family.
I have said many times it is hard to find a NS that understands and recognizes chiari and it symptoms so we do have to be patient with our family....and u have people here that can relate : )
"selma"
I know how frustrated u must be and feel free to vent...I would say everyone here can relate to what is going on and the fact that u do not have the support from family.
I have said many times it is hard to find a NS that understands and recognizes chiari and it symptoms so we do have to be patient with our family....and u have people here that can relate : )
"selma"
thanks again..glad to c u saw my other post too...yes cine showed nothing..saw a doc that was an intern w/ chiari institue manhatten..he's the one who said treat babesia..since it can mimick other diseases..get my neck fused then he will re-open chiari case...he says i mimick chiari but it is only modest.. he r believes it's not....yet i suffer and i am almost done w/ bab treatment ...and noone has answers for me...i think how could i go through neck surg..only to find out its not that...and a few nero's for the neck ..didin;t beleive it was the disc's but say maybe iam wired diffrent...i know that is the lesser of the two evils...my family thinks iam nuts and my sisters a shrink ... said one of the best doc 's saw u..it can;t b that....but is he the best...maybe i should go to the instiute and have them run more scans..i asked to have my entire spine done...but he said i didn't need too......i pray its not...i don't want this...but i need treament to live again........FYI if my brain has room as he says...why would my neck spasm....sorry iam running on and on...4 giv gram/spel...just in alot of pain.........and trying to understand...it seems today we r selves r the best docs'...and i was once a med student once upon a time..now i can't concentrate long enough to spell correct.....and got treated poorly when i came to the ER at the hosp i started training at...they said oh your young..it is prob early onset of MS...come back in a few years and will prob c it on your brain......now i know how patients feel.....i also had a pendicitis on thanksgiv eve...but my pain is so bad in my neck head i could not feel it rupture? And i knew what was happening...its the first thing your trained on...as easy pic up......i just thought hey they think iam crazy so the pendicits pain must be in my head too.....sorry iam just venting...i suffered w/ babs for along time...misdiag. me on that too....
COMMUNITY LEADER
Hi and welcome to the chiari forum.
I am so glad u came over the the forum, and as Wolf asked, have u been seen by a Chiari specialist? Many Drs , NS included r not that well educated on chiari and it's affects, so they tend to feel u must have something else and often times we r mis dx'd for yrs.
We do have a list of drs that members here have seen , u may want to take a look and do research to find a dr that is right for u that knows chiari.
Also, chiarians r prone to have DDD, stinosis, so disk issues along with all the chiari pains we can be diff to dx.
"selma"
I am so glad u came over the the forum, and as Wolf asked, have u been seen by a Chiari specialist? Many Drs , NS included r not that well educated on chiari and it's affects, so they tend to feel u must have something else and often times we r mis dx'd for yrs.
We do have a list of drs that members here have seen , u may want to take a look and do research to find a dr that is right for u that knows chiari.
Also, chiarians r prone to have DDD, stinosis, so disk issues along with all the chiari pains we can be diff to dx.
"selma"
Ok now I see what you meant for below...sorry!
You have a lot going on so I can understand why it is difficult to sort it out..
I have a lot of muscle weakness all over from Chiari and I think my neck got bad b/c my muscles were stiffening to hold my head up and the pain is from the pure effort of doing that. That is still the problems now as it is a long road to strengthen muscles after surgery. I would definitely look into it being a Chiari problem...
Carolyn
You have a lot going on so I can understand why it is difficult to sort it out..
I have a lot of muscle weakness all over from Chiari and I think my neck got bad b/c my muscles were stiffening to hold my head up and the pain is from the pure effort of doing that. That is still the problems now as it is a long road to strengthen muscles after surgery. I would definitely look into it being a Chiari problem...
Carolyn
Have you seen a NS whose specific feild is Chiari? Has anyone done a cine mri on your neck/brain? If not, I'd get ahold of a Chiari NS right away and find out if it is Chiari or not.
Personally, I've had severe neck and right shoulder spasms my entire life. Post op from the decompression this is one symptom that has been greatly reduced. That being said it does not mean that this your condition but it would seem to be a possiblity to investigate.
Wolf
Personally, I've had severe neck and right shoulder spasms my entire life. Post op from the decompression this is one symptom that has been greatly reduced. That being said it does not mean that this your condition but it would seem to be a possiblity to investigate.
Wolf
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