Aa
TOTAL WASTE OF TIME!!!!!!
Well I will start with the only positive from today.... CSF flow anterior and posteriorly at foramen magnum without any impediment, no other csf flow abnormality identified..
NOW THE NEGATIVE!!!!!!!!!
NL did not have clue why I was there, explained and handed yet another symptom list.
Nl fetches up mri of brain, oh yes cerebellar ectopia, he remembers now, we discuss overcrowding, nl says he can see slight overcrowding.
I then ask about tonsilar decent, he looked at me dumb, I dont understand im not a radiologist mrs Pinnington, he then googles chiari in front of me to check my images against what google fetches up, Oh yes I would guess about 3mm.
Im now dumbfounded!!!!! then realise he looking at my images from 14 months ago.... so I ask where are my new images to make comparison.. has it decended more is it more overcrowded now, to be told oh dear im sorry they are at the hospital 25 miles away......
What the hell...... he promises me he will make comparison on friday and then answer my questions I put forward to him on 13th December, after he consults his collegue.....
Really mrs P he says its not this tiny ectopia causing yr problems, How can you say this when you cant see images from 6 weeks ago I say and you have had to google what chiari looks like, you cat even tell me what type chiari I have,
Total utter disgusting insult to myself and my poor hubbie who at this point was nearly frothing at mouth...
Other positive was i am now getting thorcic and full spinal mri as did ask about tc.
Nl then goes onto tell me to go back to work, why you have been off I cannot understand, so tell him my pain in back,legs,shoulders had been that bad I could barely function but they are easing.. he replied go back to work it will keep yr mind active and off your probs.
Total arrogant prat then went onto tell me he thiks I am having silent migraines that can cause symptoms like mine...... WHAT THE HELL IS THIS ALL ABOUT!!!!!!
So guys totalt deflated angry and disgsted in our nhs......
Niki x x
NOW THE NEGATIVE!!!!!!!!!
NL did not have clue why I was there, explained and handed yet another symptom list.
Nl fetches up mri of brain, oh yes cerebellar ectopia, he remembers now, we discuss overcrowding, nl says he can see slight overcrowding.
I then ask about tonsilar decent, he looked at me dumb, I dont understand im not a radiologist mrs Pinnington, he then googles chiari in front of me to check my images against what google fetches up, Oh yes I would guess about 3mm.
Im now dumbfounded!!!!! then realise he looking at my images from 14 months ago.... so I ask where are my new images to make comparison.. has it decended more is it more overcrowded now, to be told oh dear im sorry they are at the hospital 25 miles away......
What the hell...... he promises me he will make comparison on friday and then answer my questions I put forward to him on 13th December, after he consults his collegue.....
Really mrs P he says its not this tiny ectopia causing yr problems, How can you say this when you cant see images from 6 weeks ago I say and you have had to google what chiari looks like, you cat even tell me what type chiari I have,
Total utter disgusting insult to myself and my poor hubbie who at this point was nearly frothing at mouth...
Other positive was i am now getting thorcic and full spinal mri as did ask about tc.
Nl then goes onto tell me to go back to work, why you have been off I cannot understand, so tell him my pain in back,legs,shoulders had been that bad I could barely function but they are easing.. he replied go back to work it will keep yr mind active and off your probs.
Total arrogant prat then went onto tell me he thiks I am having silent migraines that can cause symptoms like mine...... WHAT THE HELL IS THIS ALL ABOUT!!!!!!
So guys totalt deflated angry and disgsted in our nhs......
Niki x x
Thanks lu,lisa steph, feeling really deflated today but will hang on in there as what ever is happenning in my body I would just love to stop be it a diagnosis of chiari 0 or silent migraines or whatever I just want help, im 38 mum,wife and just want some normallity back in my life.
HUGS TO YOU ALL MY CHIARI FAMILY
NIKI X X X
HUGS TO YOU ALL MY CHIARI FAMILY
NIKI X X X
Oh Nikki I Am so sorry. I am starting to feel that not only do NL not understand chiari they don't telly understand anatomy either. Common sence *** hats..........
Any doctor that has the nerve to tell u something isn't causing problems when he had to google that something should not be practicing. I would have my liscense revoked if I tried doing CPR on a patient and didn't know they were still breathing and heart beating. It is just as stupid that they should be allowed to treat u with such ignorance.......
Hang in there
Any doctor that has the nerve to tell u something isn't causing problems when he had to google that something should not be practicing. I would have my liscense revoked if I tried doing CPR on a patient and didn't know they were still breathing and heart beating. It is just as stupid that they should be allowed to treat u with such ignorance.......
Hang in there
Oh, sweetie, I'm so sorry!!!! We don't seem to be having the best of luck lately! I wish that this was a much easier process and that we could be taken seriously!!! I can't believe a DOCTOR would proceed to go on GOOGLE to check medical information!!!!! You are in my thoughts as always!!!
XOXOX
Steph
XOXOX
Steph
What a disappointing frustrating day this had to be for you! Wishing you the best of luck with your next appointment!
Lisa
Lisa
Thanks ray will look into this, I really think its chiari 0 but even so im still debilitated with pain in my lower body at times and although dont get debilitating headaches do get them that last 4 weeks at a time, the pain between my shoulders is awful, and get get constant vibrations down and through my body lasting weeks on end, lots of visual disturbance and blured vision loss of sexual function and sensation and temporay numbness anywher on my body.
All this is silent migraines I think not!!!!! praying in 3 months time i can get to see cm specialist in Liverpool.
Hug
Nic x x x
All this is silent migraines I think not!!!!! praying in 3 months time i can get to see cm specialist in Liverpool.
Hug
Nic x x x
Hi Niki, sorry that you are getting the royal Chiari run around as Selma put it, can you get copy's of your medical records under freedom of information? I would request copy's of my MRI CD if possible and bring them along to my appointments.
More info on FOI can be found here......
http://www.ico.gov.uk/for_the_public/topic_specific_guides/health.aspx
Ray
More info on FOI can be found here......
http://www.ico.gov.uk/for_the_public/topic_specific_guides/health.aspx
Ray
Useless is an understatement Honey, my specialist appointment is going to take at least 13 weeks from the day my own GP does referal,
this has got to be after 13th dec as NL wants to see me again to answer my questions he could not answer yesterday.
Overhere you cannot be under more than one NL at time for same condition, so my gp advices to keep this 13th apt, have full spinal mri done then go for referal, this way they will be able to gain all results and images and reports and advice me accordingly.
Hugs
Niki x x x
this has got to be after 13th dec as NL wants to see me again to answer my questions he could not answer yesterday.
Overhere you cannot be under more than one NL at time for same condition, so my gp advices to keep this 13th apt, have full spinal mri done then go for referal, this way they will be able to gain all results and images and reports and advice me accordingly.
Hugs
Niki x x x
Oh my goodness. I thought my NL was utterly useless, but yours takes the cake.
I'm glad you're getting into a specialist. How long until your appt?
TTFN,
Jenn
I'm glad you're getting into a specialist. How long until your appt?
TTFN,
Jenn
COMMUNITY LEADER
HI...yes it is possible for it to get worse in a shorter time frame....it is diff for everyone...sometimes it will change slowly and sometimes very rapidly......
Just call them back and say it is not for u, but so ur dr has it when u go...let them know what just happened and that is y u want them...to take to the dr....OMG.....
Praying u get someone with some brains...no pun intended....lol....
"selma"
Just call them back and say it is not for u, but so ur dr has it when u go...let them know what just happened and that is y u want them...to take to the dr....OMG.....
Praying u get someone with some brains...no pun intended....lol....
"selma"
Thanks for your kind thoughts Honey, am going to my gp tomorrow for referal to chiari specialist, this wiil take about 13 weeks, but pray he will listen as he is ns not nl...
Hugs
Nic x x
Hugs
Nic x x
Yes Selma I am seeing my gp tomorrow and am going for referal to a cm specialist that is about 50 miles away and have requesed all my mri images and reports to be told you wont understand them so you cant have them!!!!!
Banging my head against a brick wall,
Could my ectopia have got bigger in 14 months selma and coud my slight overcrowding become worse in 14 months, Im just stunned that this guy was looking at old images and not new ones he ordered, he could not even tell me my spinal cervical results, and also told me autoimune has nothing to do with chiari, your bruising and slow healing are not connected.
Going back to work and will try and work through my pain and constant feeling of drunkness..
Just praying I dont fall or hurt one of my little kiddies I teach...
Nic x x
Banging my head against a brick wall,
Could my ectopia have got bigger in 14 months selma and coud my slight overcrowding become worse in 14 months, Im just stunned that this guy was looking at old images and not new ones he ordered, he could not even tell me my spinal cervical results, and also told me autoimune has nothing to do with chiari, your bruising and slow healing are not connected.
Going back to work and will try and work through my pain and constant feeling of drunkness..
Just praying I dont fall or hurt one of my little kiddies I teach...
Nic x x
WOW. I would be shopping for a new doctor. Im sorry that you have to go through that. Unfortunately that is the case with so many of us :( Hope you get some answers soon!
COMMUNITY LEADER
Hi...I am so sorry...this has happened to me as well... buffoons that have no idea what chiari is, but have the nerve to say u r not in pain as a result of it.....really???
The royal chiari run around....this is y we get copies of the MRI...I am not sure if u r able to do that over there, but if u can, u would have had them with u.....I love saying, oh u don't have that yet, I have it with me...here u go.....lol....
I am not sure if this dr having the newer results will be able to tell u nething diff than he already has...do u have other options?
"selma"
The royal chiari run around....this is y we get copies of the MRI...I am not sure if u r able to do that over there, but if u can, u would have had them with u.....I love saying, oh u don't have that yet, I have it with me...here u go.....lol....
I am not sure if this dr having the newer results will be able to tell u nething diff than he already has...do u have other options?
"selma"
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