Small Chiari & Getting the right Consultant. (Maybe Chiari 0?)

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First of all... Wow I have been so blessed and encouraged by the quick and helpful responses from this group! So thank you very much!

As some of you may have read from my previous post, I have a smaller Chiari, and I only just got told it was Chiari this week...

I was just wondering who here has had experence with a smaller Chiari and have been able to get the help they need??

Now I know that a small chiari can cause just as many symptoms as any other, unfortuantely my last neurosurgeon didn't believe that lol 

I'm just wondering if there are people here who have experience with a smaller but very symptomatic Chiari?

I have no syrinx and the Dr said no hydrocephalus but I haven't had a CSF flow done yet. 

Also if you are similar to me, who have you gone to in the UK?  

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  • Posted

    I have smilar as you are, but I suffer terrible as I stated with you, as well as what hayley and others were saying evry one is different, what effecting me might not be effected others, I was in the blink of housebound, but obviously eventhough i DO NOT have syrink or hydrocephaus the cfs flow must be obsgtructd, hence I have similar symptom such yours, but when I SNEEZE, COUGH, GO TO NUMBER 2, lough, take a deep breath I will collapse, hence i have to resign from my exectuive job, eventhough it might be just a small chiari its not the length of the hernia ..its how much obstruction they might have a strong pressure just like me..that is why you are suffering so I postd toyou earlier, after 3rd opinion..both neurologists and both ns suggested me to have decompression, but I was taken to A& I used to talk to read and join to this website before having th 3rd opinion and also talk to Ann Conroy as well as reading on the website..also following youtube, because at first i did not like the idea of having my skul being cut etc..etc, I do not believe surgery..that should be the last option..but I then realised as well as I could not put up with the pain any longer..hence I then agreed wanting to have decompression, only after getting some ideas from people from this website and other website..believe me people who are getting better, they do not bother being on any support group as they are bussy with their life..I was lucky enough..that I am able to get to Mr Flint's waiting List , but I have been waiting since April 2015...I would rather least I am confident with him..I met him..he was so honest ..explained it to me.the benefit verses the risk..etc...I have to travel 31/2 hours, I heard the walton also brilliant, Nottingham also depend where do you live, have you call Ann Conroy Trust yet?,, that would I do, if I were you..then talk to your GP..then get second opinion...
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    • Posted

      Hey smile thank you so much for your reply. I am housebound now, and have been since December. I have lost every morsel of a social life and can't work. My quality of life is so poor. I'm seeing my GP to get a referral to Mr Flint, I live a couple hours away. 

      Did Mr Flint do any other scans? Or a CSF flow? 

      I'm curious how he reacted to a smaller chiari? Sorry to ask so many questions, I just had a terrible experience this week. 

      How big is your chiari?

      I contacted the Ann Conroy trust, just waiting for them to get back to me. 

      I realise we will all have differing stories and symptoms, I'm just so interested to finally be in touch with people just like me and so i have so many questions popping through my head.

      At the moment on top of the pain, I'm on so much medication which is also making me ill. 

      Anything you can give me about your experience would be greatly appreciated. I felt so stupid and a fool after I saw the consultant this week, I felt pretty hopeless until I woke up the next day and decided to look for other help. 

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    • Posted

      Mr Flint is the head of the Brain & Spine organisation ( I think) check with the Ann Conroy- when I speak to my gp and NS , I said to them that; ''I rather die, than having my life upside down like this, i was like vegetable, my families and friends were looking after me, I told my NS//Gps if they are not going to refer e to Mr Flint they need to write me a letter as ''to WHY'' as this is very rare condition, I only feel confident with him after I spoke to Ann conroy organisation, but you live in West Mindlans, people come come from all over UK (like Carey , I think she is from Scotland) you need no worry they would understand that...its not like brain tumor where the NS gt used to with this condition, chiari still rare at is only now..since they have MRI/scan the Neurologist getting to know more and more about Chiari..sometime they misdiagnosed with Fibromyalgi or CFS (Chronic Fatigue Syndrome) condition. Any anti depression drugs only making it worse, topiramate have help me a lot for the first few months with deluxitine you might like to try to ease the pain ask you gp for least that help you a bit just take it a night time only..until you see Mr Flint..but again..I urgely first you should see your gp..if you really feel not bother to go to your gp if you are that worry..get the ambulance..tell  them that you fell fainting..explain it to them what you have..that would be the quickest and easiest way to get to 2nd opinion..

      Its only you know how worry and how painful you are, in my case, I could not even stand nor sit..i was that pain ful..I was so scared i thought I was going to die..the paramedic thought i had mini stroke, when I was arrive at the A&E, I promised you, I was in terrible state, worse than giving a birth...all my arms, legs felt like in and needles, my body ached, my head was spinning, dizzy, I was vomitting, OMG, I just could not imagine, honestly I felt like ...S,,,, hence I am so dying to have this OP...

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    • Posted

      Oh bless your heart. I'm so sorry to hear you're having to go through this. I know for me the pain in my head has reached 9 out of 10, and I'm not someone who exaggerates. I've never felt that kind of pain before. Even sometimes the tramadol doesn't touch it and I just lie there suffering.

      How big is your chiari or what's the story with yours? I attached a photo of mine. 

      How did Mr Flint react to a smaller chiari, did he order any more scans? 

      Whens your surgery date? 

      Really pleased to have met someone like you!

      And thank you for the suggestion of the other medication. I've got the first appt I could get with my GP on March 1st. I will discuss the meds with him then.

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    • Posted

      Well, if you in a lot of pain, should you wait till March?, dont they have emergency apointment first thing in the morning?, each day is precious for me, when I was in a mission to get the 2nd and 3rd opinion I wont rest untill I got it, I suppose I am just the way I am, I just wont give in, now I know that I AM ON THE WAITING LIST, even then I KEEP CALLING Queen Elisabeth Hospital every 2 weeks to see if there is any cancellation (LOL) op will be in May (God Willing) - tonsil is 4cm, tramadol wont do any good, and pro long the used of tramadol wont do any good as it is opiod (Tramacet and paracetemol)...I like have CSF obstruction here?, hnce you feel how I am feeling.. normally deluxitine is just SSRI (anti depression, but it relaxing the muscle/nerve, and topiramex is for epilepsy drug, but its helping for terrible migraine/headache..start with a smallest dose..then increase to maximum dose depending whether it suit the patient or not..., I dont take it anything anynore, as i  just take, grapeseed extract (300mg) each day, selenium, omega oil 1100 mg, magnesium oil each night massage all over my body, neck back of my skull (occipital) before bed time. Gluten free food, drink 2ltrs liquid, stop eating fried food, and try eat as healthy as possible, walk (even I struggle 10 - 15 minutes daily) that way..I cope better and even though my balance still not 100% my pain is 6 ish unless I cough/sneeze/lough/doing no2/bending/standing up from sitting down - then it will be no 10. But,,, I am happy because I know there is a light at the end of this tunnel..I look forward of my OP..I am sure I will be the lucky one..hence I like to set up the education for all the Health Care Professional in my area..just to ensure they know and realise how frustrated it is for the chiarian not knowing what to do? I hope  i hope I give you the encouragement to keep up with your gp and get the soonest appointment..remembr?..your health is in your hand?
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