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Newly diagnosed - Chiari Malformation

Posted , 4 users are following.

htch
htch

hi all, I've just been officially diagnosed with this condition. I haven't been told to what degree the herniation is but that it is causing some CSF obstruction around the bottom of the cerebellum and brain stem. 

I have been referred to a NS for a follow up but can't find any mention of this NS being a chiari specialist although the neurologist said "he does most of our Chiari surgeries"  this is at UCHW (coventry) hospital.

He said I do not have a syrinx but I have only had a brain MRI which shows the top of the spine only. 

My symptoms are mainly pressure headaches (valsalva) but I have been experiencing bad neck & shoulder pain like burning which I had put down to and posture and get lower back pain when standing for long periods. I also get burning pain down the front of my thigh when standing. 

I dont one want to assume all these are related to Chiari but don't want to ignore them either. i am hoping the NS will request a full spine MRI. 

Also so wanted to get feedback form anyone who has been treated for this condition a this hospital. 

Thanks and merry xmas to all 

 

0 likes, 8 replies

8 Replies

  • darren1982
    darren1982 htch

    Posted

    Hi there, I'm in the process of finding out as have MRI Jan 5th - can I ask how long the MRI results took to come back to your GP !?
    • htch
      htch darren1982

      Posted

      Hi, I am lucky enough to have private healthcare through employer so I had MRI and follow up with Neuro a week later.

      But I believe in UK if the results are going back to GP then they should have the images and radiologist report in 2 weeks max. However I would highly recommend asking for a copy of images at your MRI (before you get scanned) they may charge but will be worth it as radiologists do not always pick up Chiari and having the images will help if you need a second opinion

      Best of luck... Where are you being seen ?

    • darren1982
      darren1982 htch

      Posted

      Hi, im going to be seen at Swansea singleton hospital UK . My GP sent me for a MRI 4 weeks ago and have the appointment January 5th - I've had a CT scan and they found low lying tonsils so my doctor wants a MRI to check everything.
    • htch
      htch darren1982

      Posted

      I had great difficulty with GP. She didn't want to refer me and took 3 weeks and 5 phone calls to get her to do referral as she had no answer as to what was cause my headaches (valsalva headache).

      Neuro sent me for MRI and CSF study as soon as I told him my symptoms. CSF study is needed to check that there is no restriction of the fluid in the area of the malformation.

      Sounds like your GP is a little more clues up however sometimes they dismiss if they don't think the tonsils are lying low enough which is why it is useful to have a copy of the images

  • b2wc97455
    b2wc97455 htch

    Posted

    Hi There, welcome to the group, good job the health care professional act immidiately and they diagnosed you promptly you are one of the lucky one , living in CV also great you can ask your NS to let you know though how many cm it is, they should be able to let you know call them, you need to build a good relation ship with your own health care team thus it will be easier to get help. By showing them that you are proactive and really keen and know your stuff so well they respect you, if you let them just telling what ..and what..they just treat you like others..do not forget they see so many patient not ust chairian..and themself have lack of awareness of ours..so if they see patients more keen and their stuff..they proone to be more interst to us..so start looking at you tube and look at mayo clinic is good one to learn..if you like to know about NS in your area have a look at ann conroy or call them they will be able to show you who are registered with them from Reddith, Coventry, Birmingham..Mr Flint is one of the best in the UK..but saying that..others also good in your area..but give Ann Conroy a call..oln the other hand ..have a lovely christmas..hope you will have a great news...let us know how you are getting on
    • htch
      htch b2wc97455

      Posted

      Thanks. I think I was diagnosed quickly as I already thought it may be this so ensured I was clear in my explanation of symptom. Although GP did not have a clue !

      I've looked at Ann Conroy and have seen the listed doctors and seen a lot about Mr Flint but there are none list at UHCW. However as Coventry is also a centre for neurology then I am not being referred to Mr Flint at this point but to a UHCW NS.

      I see him early January so will be asking more details at that appointment as NL gave no indication as to the degree of herniation but I have seen my images and have a copy of them and I would say it is very obviously herniated so in excess of 1cm at a guess but will be asking NS for this info when I see him in a couple of weeks.

    • b2wc97455
      b2wc97455 htch

      Posted

      Hi HTCH,

      I am glad you have got my message ...well it is the patient right to be reffered to where/who evere he/she wants, about 7 years ago NHS introduced choose and book - so that the patient able to have a choice where they want to be looked after and make decision about their own health..just be awared our condition is not like having knee replacement..is more complex than that.,hence lots of our primary care gp or even neurlogists themself still have not got awareness about chiari..hence is only ample of them putting their name on the Trust so that patients can be sure that they can be help..hence this type of organisation such as this website; Ann Conroy are here to help us..luckily for you Coventry are not far off from Birmingham, I am sure in term of Budget wise..they are still cover under the same area..they can transfer the fund from Birmingham to Coventry as it is still in west Midlands or Vice Versa.., even I am in Dorset..I will be seen in Brmingham..as long as you insist it with assertive (with polite manner-let them know how worry you are about your condition..put your self in their/or their family shoes) surely that they want to do their utmost and to have some one who has done most operation - but if the one you have got there have done lots of surgery and have a good success rate..you surely be confident that he/she going to do a great job..the main reason for having operation is to stop pro0gression of getting worse.n So good luck and let us know..at least they ll see you straight away..I have to wait for a year to see Mr Flint.

  • b2wc97455
    b2wc97455 htch

    Posted

    Hi there,

    I am sure that I respond to your posted before, I don't know it did show here, you have the best area there in the UK, best think to do is call ann conroy if you are confuse there are a list there for NS or ask your Neurologist to recommend you which NS they like you to go to..but prior to that..please be proactive your self by reading about your condition trhough website, youtube that way you prepare the outcome and what to expect from maintaining and the operation and recovery , I found this website is very helpful and interesting, lots of members also experience with the condition..every one is difference hence you know what to expect..Good luc..let us know how are you getting on..I am waiting for my second opinion to Birmingham Hospital..

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