Any advice??

[cazza1975]

Hello all, My name is Caroline Im from the UK Ive struggled for years with bad neck pain, Headaches, pains in shoulder hands, wrists, lower back pain tiredness, I forget everything even my kids names  I was diagnosed with carpul tunnel  presumed it was from a car accident I had 5 years ago and recently diagnosed with Sero neg Rheumatiod Artheritis. and started to get pins and needles in my feet if i sat or stood to long. been told for years its because im over weight at 107kgs and 5ft8 i am a little but not excessive I wish i could excersise but the pain is too much at times. Any way after a recent MRI scan they found a 6mm type 1 Arnold chiari malformation meant nothing to me and the neurologist just said it was neck pain which id had for years so left with no follow up appointment it was at the begining of February that i got the letter and research the Chiari when i saw the real diagnoses. With having a young family what is my out come on this? Is it likely that my RA is the symptoms of chiari?or am i just unlucky to have the both I find im continously tired feel like im drained of energy? Any advice will help? what do i ask my neurologist when I go see him/her in april

[cazza1975]

Aww thank you hun. It is hard to stay stress free. I cope well with the kids and that just the job that gets me down. Find my moods are all over they place at the min it all changing so fast.  We dont get speacial treatment we just keep leighton going dont even get a thanks at times. I like my job there though I cant afford to leave my job yet Im trying to keep life normal it is so hard though at times. Thank you for all your advice i will visit my doctor to get refered to Walton  Thanks once again xx

[niki3350]

Oh god you would have thought that working at leighton you would get the help you deserve honey.

I live my life feeling the drunk feeling you describe, its that bad some days that I have to stop driving.

Two years ago at the begginning of my testing I was under ENT at leighton and was told there is nothing wrong with you, alter your lifestyle and you will be fine, so off I go loose 3 stones and go from a size 16 to a 10 and trust me honey my pain now is worse than ever and so is my numbness etc, so loosing weight made no difference at all.

I sway all the time and now stand with my arms wrapped around myself to help steady me, my husband now comes shopping with me after a wobble and fall into the pasta aisle in Asda, oh god it was sooooooooo embarasing.

The memory probs are awful and I can sympathise with you when you say you feel like you are going mental, but trust me you are not.

Get that appointment with your gp and go for referal, if like me I truly believe you wont regret it, its your right so dont let gp fob you off.

Let me no how it goes, stay strong and try to remain stress free, hard yes with 3 kids,husband,work and your medical probs but stress can flare your symptoms.

Spaeak soon honey
Niki x x x

[cazza1975]

Yes nikki I thought i was getting work shy lol as every day is a battle for me i know the knackered feeling I am a health care assistant at leighton lol I try and get through the day as best i can. I find some days a struggle Im tired all the time some days it kills me to get out of bed Im surprised Ive not had a break down yet With the  constant headaches neck and shoulder pain I get lower back pain its a struggle
I cant care for my 20 month old as i would like I cant bath her as my back pain is horrendous i struggle some days to carry her at all if i lift her my arms go numb with really bad pain shooting through them im not sure if the pain is muscular or joint. I depend alot on my two teenagers and husband to help with her  
When i ask for professional help from GPs im just told to loose weight I wish I could go running, swimming and be normal i wouldnt be in this mess I started to stumble to one side a few weeks ago feels like im drunk if i stand still ie queing in shops or at work if i stand still grabbing on to walls in a panic
I forget everything even what im at work for I repeatedly ask what am i doing. I talk random things that are not relevent to the conversation people laugh at me all the time as i get my word mixed up I say some thing and dont remember what ive said I insult people and dont remember what i say


Im not sure whats normal and what isnt lol
I started to believe that i had a mental problem as if this is real?

[niki3350]

Dont worry just hang on in there, we have all at some point been made to feel we are going mad!!!!

But this forum made me realise I was not, the chiari runaround is a nitemare you have to stay strong and keep going, this is the strenght I got fom here because I was seriously about to give up, I was sick to death of coming home from leighton in tears, them telling me it was silent migraine, or chiari or m,e or nothing then just leaving me hanging and not following it up.

You  will learn from here that its not the size of the herniation that matters, its the shape and the blockage of csf if there is one that if left is dangerous.

Like you mine is 6mm and at walton they did not rule out surgery but felt that it would only relief the pressure pain and headaches that last up to 4 weeks, this seriously is not my main issue, mine is horrific balance issues,pain pain pain in my body especially my legs back and between my shoulders, I am now loosing bladder control, am exhausted all the time, have numbness in my legs and get the most terible sensations a bit like vibrations that run through my body.

Since Ocgtober this year I have had 6 collapses that freak me out, one min im fine the next my mind and body just stop, i shake then go weak, I have to lie down immediatley then sleep for hours and wake up feeling ok.

I work in special education and have a very demanding job working with severly autistic children and up until September was managing ok, a few weeks of here and there, crying by thursday as I was so knakerd but struggling on. In August I had a major setback and could barely walk with pain, Im still off as my symptoms just dont seem to be settling at the moment.

I used to attack life at 100 miles an hour adore my job and my family life but now im lucky if I attack life at 20 mile an hour.

Do you work??? how do you cope????  Im praying for some kind of answers when I go back to walton in march, as seriously want my old life back.

Niki x x x

[cazza1975]

Thank you Niki     Its been a nightmare for myself too Ive had countless run ins with the secretary at north staffs.  I am under leighton for my RA although Im sero neg which means it doesnt show up im my blood tests I clearly have inflammation as my esr levels and crp levels are raised most of the time

I have got use to most of the pains it was the numbness in my feet and ankles that worried  me its very similar to the carpul tunnel but i was looked at like i was stupid when i told them. Thats when i started to think maybe it was all in the mind or id dreamt it.

Its a great relief to know i wont have to go back under northstaffs I will go back and see my GP when I can get an appointment with them. Im totally lost as in what i should and shouldnt be doing I was going to forget about it and just leave it but something keeps telling me to get it sorted.  

I didnt think 6mm was that bad i thought it had to be over 10mm for them to do anything

[niki3350]

Hi Honey

Well I was at north staffs and leighton hospital also and all there neuros disregarded my symptoms,  I was initially tested for ms and it took 3 years of mri,lumbar punctures etc to proove it was not ms.

They then said it was silent migraines errrrrrrrrr   no i dont think so, they then said it was M,E and fibromalagia excuse spelling.  

They then told me I was a mystery and did not no what was wrong with me in December, so I got my GP to do referral to walton, seriously do it they confirmed chiari 1 6mm 3 weeks ago and im now going to see a senior neurologist as the chiari specialist mr brodbelt is thinking I may have other neuro issues alongside my chiari.

My referal was done on 18th December and I got my appointment on 31st Jan.

I now go back on the 3oth march then 4th april to get both professionals opinions.

All I can say is that staffs and leighton could not help or answer my questions and those I did ask they could not answer correctly.  they told me 2.4mm herniation its 6mm and they also told me my herniation had remained the same from 2009 to 2010 wrong it has gone down further..

From my experience dont go to staffs honey get to yr gp monday and go for that referral, I have spent years now fighting in tears from there lack of knowledge.

Hope this helps, walton for me was a 50 min drive away that was well,well worth it.

it mat take longer for you as you will need cine mri and full lumbar mri to test for blockages and sryinx.

Stay in touch
Niki x x x

[cazza1975]

Hi Dellsey. I never really heard of this before people keep saying oh you were born with it youll be fine. When I researched it and the web come up with surgery I thought nah thats not me my consultant discharged me cant be serious. Is it? I had to fight to go back to see him and now have to wait til April to see him I really dont know what to do? My Gp wasnt inpressed that i demanded to go back and see a consultant. My Csf has not been checked and Ive had no further investigations or information on it I just wanted to know if my Ra is really chiari?  is my carpul tunnel  to do with chiari?What is involved  as in staying healthy and pain free what will my future hold for me do I need surgery? how do i tell my family and children the seriousness of this instead of saying well ive never been right in the head! I will see if i can get referred to a neuro surgeon will he just operate on me?

Thank you for your help

[dellsey]

Hi - I'm a Chiarian too!  I live in S Yorkshire - not too far from you.  I had the decompression op July last year.  I have Chiari 1 Malformation with Syringomyelia (syrinx in spinal cord) - but didn't know until last year just before the op and now, after having had the decompression, the syrinx in my spinal cord is shrinking.  If I were you I would push your GP to get you to see a GOOD Neurosurgeon.  I, eventually got passed to one in Sheffield and within no time I was in for the decompression op in order to aid the flow of the CSF and thus hopefully cause the syrinx to shrink (to halt progression of my symptoms).  I'm due for a follow up appt on 2 March and will be able to look at the MRI scans that were done in Nov - showing the shrinkage.  Don't give up - get some further investigations on the way.  When I had been given all the facts about the syrinx problem and I had thought about it a lot, I personally knew that for me it was the right thing to do to have the surgery - even though i was really scared and not very brave.

[cazza1975]

Selma no I was an accidental finding my neurologist discharged me after discovering what I had, telling me it was neck pain So Ive had no further investigations Im not sure How I go about getting any further I had to fight to go back to see him after complaining. But I will push further and now i know what tests i need i will definiately go back with fight in me. It been a nightmare since i was found to have this.

Niki Thank you for your reply nice to know there are other Chiaris in my area I live in cheshire but not far from liverpool well a half hour drive Do i need to be referred by my own GP. My neurologist at North staffs in stafford wasnt much good 6 times ive been to see him and ended up seeing a junior no offence to juniors but it worried me when i found it to be the cerebellum and not really my neck. cant believe he discharged me knowing all my symptoms
Thanks any advice will be greatly recieved  

[niki3350]

Hello and welcome from another chiari patient from England.

Like you I have 6mm herniation and huge symptom list pain,memory loss,fatigue,head pain numbness, etc etc etc.

Get yourself a true chiari neurosurgeon Honey, without one you will get nowhere, after 3 years of struggling I have finally got one at the Walton neuro centre in liverpool.

Where do you live??  look on ann conroy website for neurosurgeon as neurologists just dont get chiari honey.

You are probably going to get the chiari runaround so be prepared, its an awful battle but dont give up.

If needs be get a referral from your gp.

NIKI

[selmaS]

  Hi and welcome to the Chiari forum.

  Many with pain will have an issue with low energy levels...do have ur PCP check all ur vitamin and mineral levels to be sure u do not have a low levels....vit D, Vit B12, and minerals magnesium and potassium should be checked as well.

The most important issue at this point is for u to have a CINE MRI to check for a CSF blockage...were u checked for a syrinx or ne other chiari related conditions....RA is something chiarians r prone for...so it is a possibility....that it is tied into ur chiari dx.....

Were u tested for Ehlers-danlos?it can cause much of the same paints as RA...and it should be ruled out if u r ever considered a surgical candidate.

Make sure ur carpal tunnel is dx using EMG testing as it can be mis-dx'd.....

And last, be sure u find a true chiari specialist to help guide u.

We r happy to have u join us here, but not happy for the reasons that bring u.

"selma"