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New to Chiari and need help please!

Posted , 9 users are following.

torigrace
torigrace

Hi Everyone,

Recently after a year of being tossed from GP to neurologist to Chronic Pain Consultant, I decided to pay for a full spinal MRI. It revealed that my tonsils are prominent and project just below the Foramen Magnum. I went and paid to have a consultant with a NS in Cambridge. 

He told me that he that my Chiari was not the cause of my symptoms. I was shocked, and he said that I needed to go see a headache specialist.. Please know that this was the first time anyone had told me I actually had Chiari!! I asked him what about the research done on those people who have a smaller tonsillar descent than others, but have severe, life debilitating systems? He dismissed that and me and said that he relied on his own experience. He said I have no syrinx or from what he can see hydrocephalus, do you HAVE to have these 2 things to warrant help or treatment? Can you be symptomatic without them? 

I have been confused and frustrated and feeling hopeless. 

But today I have awoken feeling like I need to get a 2nd opinion, as I am sure my symptoms are from the Chiari and not just headaches/migraines.

My symptoms below:

Constant Severe Headaches

Intense pain and aching at the back of the head

Pressure behind the eyes and in the head and neck

Severe Neck Pain 

Pain in the face (Nerve pain?) and some loss of sensation

Head pain, pressure when I get up from lying down. 

Head pain & pressure sometimes when I’m on the loo. Almost like my head is going to explode.

Loss of sensation in hands & sometimes pins and needles.

Some loss of sensation in feet & sometimes pins and needles. 

Weakness in both hands and legs. Definite loss of strength.

Nerve twitching, sudden jerks in legs and all over body

Difficulty Swallowing

Dizziness and light headedness 

Eyes sensitive to light

Eye sight can be spotty / fuzzy

Clumsiness

Unsteady on my feet

Severe Nausea

Loss of appetite

Diarrhoea after eating meals

Constipation from the medication 

Heart Palpitations

Brain Fog, Confusion

Short term memory issues

Insomnia

Pain gets worse as the day goes on. But sometimes I wake up with pain as well.

I am currently on Gabapentin, Tramadol, Paracetemol and Cyclizine. And they are all making me SO ill but take the edge of the pain sometimes.

If anyone has ANY recommendations of other consultants in the UK or have had similar experiences or even can answer the question of whether I need to have a syrinx or hydrocephalus in order for the Chiari to be symptomatic? I'd be so grateful for anything.

I'm really in the dark, please help!

I'm 28 and I want to be able to enjoy life again. It all started going down hill in March 2015, but before I had some of these symptoms after severe whiplash 9 years ago, which have gotten worse.

I've attached a couple of snapshots from my MRI, I am in NO way looking for a diagnosis from these, I just wanted to know if someone's MRI looked similar etc. 

Okay. SUPER Long post. If you've gotten to the end... CONGRATULATIONS AND THANK YOU. cheesygrin

1 like, 25 replies

25 Replies

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  • viola01
    viola01 torigrace

    Posted

    Poor you. So young too. I don't have the chiari but do have a syrinx and have all the symptoms you list, many though they are.

    After three years of hospital visits I still don't have an answer or a clear route and wish I could offer you a clear answer. I am sure all of the people who post on here would say their path ( hate to say the 'j' word) is equally varied.

    It is just horrid being in so much pain and feeling so disempowered. Just hang on to the fact that a) you are not bonkers and b) sometimes, some of the treatments might offer some healing for a little while, even not in the long term.

    Wishing you all the very best of luck and hoping someone can suggest a really good ns that will be supportive.

  • hayleybell
    hayleybell torigrace

    Posted

    Welcome to the world of Chiari.......

    Firstly, having a dismissive neurologist is very common. Many of us have experienced this for years on end. You are not alone.

    You DO NOT have to have syrinx and or hydrocephalus to suffer with symptoms. (I am not a medical professional but I am a Chiari patient that has years of experience in suffering!) Many of us have experienced neurologists saying it is migraine, stress etc.

    Some people have Chiari and are asymptomatic, some have a 6 MM over hang and suffer terribly, some may have a 12 MM for example, and have mild symptoms. So the size is not relevant, what is relevant is the shape and size of the individuals skull and their symptoms.

    Chiari patients often have a very broad range of symptoms, from my experience ( diagnosed 7 years ago, decompression surgery last May and a whole lot of research/reading) the most common symptom is valsalva headache, this would be pain to the back of the head and neck from straining, coughing, laughing, standing up etc.

    when I was first diagnosed I was randomly falling to one side, having "funny turns" and horrific pressure pain to my eyes, horrid! As the years went by my symptoms worsened and became very numerous and unbearable. So please rest assured that you are not alone.

    I also have a very bad back and was in a lot of pain and on a lot of medication. I would seriously advise getting off the tramadol, nasty drug, nasty, nasty!

    check out The Ann Conroy trust website for neurosurgeons and neurologists in your area. Great website in the UK for information and well worth a read.

    There is a surgical procedure that helps to prevent symptoms worsening but not everyone benefits from this. I am fortunate and doing really well. There is no cure for Chiari, but surgery aims to create more room for your brain and reduce the valsalva headaches. 

    Anyway, as always I have lots to say, I like to be of some help as I have been where you are now, a long time ago and I believe in sharing some Chiari love! If I can help in any other way, please just ask.

     

    • torigrace
      torigrace hayleybell

      Posted

      You are so sweet and thoughtful to have taken the time to write all that. Thank you smile I went to see a neurosurgeon who has now referred me to a neurologist because I have headaches... I didn't realise a headache could cause ALL those symptoms. 

      I felt so lost until I thought I'm going to get a second opinion. 

      So thank you I have checked out the Ann Conroy trust! But would love to know people's experiences, because I went to see someone from their list.

      I think my chiari is very small compared to others but I'm having such severe symptoms. I mean I literally have no life, I can't go out unless for a dr appt or see friends. I feel trapped. And I want a doctor to actually help me! 

      Hearing your story does bring me some hope! Thank you so much x

  • manctofu
    manctofu torigrace

    Posted

    No, you do not have to have those things to suffer your symptoms. As others have said, dismissive neurologists seem to be common. Ignore them completely. No-one knows what you feel, no-one can feel it in your place. I have both syrinx and Chiari, and although my neurologist dismissed the syrinx as asymptomatic without even asking me, he at least agrees that my constant headaches are caused by the Chiari. Good luck, and stick to your guns.
    • torigrace
      torigrace manctofu

      Posted

      This really encouraged me, thank you so much for taking the time to post. I thought perhaps I had to have a syrinx and hydrocephalus in order to be symptomatic. He mentioned that he couldn't see a CSF blockage but i told him my cerebellum looks different to a normal one.

      Sticking to my guns smile thank you again!

  • helen11122
    helen11122 torigrace

    Posted

    I had some of your symptoms for 7yr and a consultant for my back requested a scan and diagnosed my chiari, he referred me to a neurosurgeon in rvi in Newcastle, and I had decompression surgery Aug 2014. had all the pressure headaches and a whiplash injurie too. I'm 61yrs old and took a while to recover from surgery. I still suffer some head aches and dizziness. But everyone is different who suffers and recovers. I had all the medication your on too. It is so frustrating when your not getting answers. I was passed back and forth for pain management, till they couldn't do anymore. Thank goodness my spinal consultant noticed this on a scan. Don't give up and keep going back, even for 2nd opionion.
    • torigrace
      torigrace helen11122

      Posted

      Thank you for your kind response helen! I'm pleased to hear you were able to get some help smile It gives me hope. At first I thought perhaps I wouldn't be allowed to get a 2nd opinion, like it would throw up a red flag that I'm just seeking attention, but I can't help but go with my gut instinct, that this is not just "headaches". 
  • b2wc97455
    b2wc97455 torigrace

    Posted

    Dear Torigrace, just reading your post, I have the experience of Hayleybell and Helen so, just the like wise answer to them, contact Ann Connroy trust, get the second opinion but do not leave it too long...at least you have us here, we can share each others, I met with others 2 chiarian who were successful in their op. unfortunately they are busy with their life so they do not join the site...but every one is different..I am waiting for my operation after 3rd opinion..that is the beauty being in the UK...we can choose and book where ever we feel confident and right..remember we need to look after our health...but be POSITIVE..I used to take eight drugs, from opiod to morphines and also SSRI/SNRI, but I stopped all of them, just rely on magnesium oil, supplements now days..as all that drugs do not even help me any more..so..there you go...be assertive as well when talking to your ns..explain it to them how you are feeling, they are there to help you..hence you go to see them..tell them..if you can't stand the pain anymore, in UK, health care professional have to cARE ABOUT:

    1. Patient Quality Of Life (this condition is effecting your quality of life)

    2. Mental Health is a big thing in the UK am (tell him this is also effecting you, mentally)

    3.Waiting List no more than 18 weeks (make sure you diarised when you ask them to refer you for 2nd opinion)

    4.There is a solicitor call jeffry to act ''no win no fee'' for negligence ( make sure you write to your health care and summarise what you write if they have not response you cc to PALS, if you have no joy then you can contact Jeffry - it will never come to this..as once they see that you copy to PALS (or CCG - clinical commission group) they will act promptly.

    anyway..i HOPE this information can be so useful... GOOD LUCK

    • torigrace
      torigrace b2wc97455

      Posted

      Oh wowsers that's some great wisdom smile thank you so much for taking the time to write. 

      Can I go to my GP and specifically ask to see a certain consultant who specialises in Chiari. I have a couple mind like Mr Graham Flint in Birmingham. 

      Who do you see?

      My first and only experience of a Neurosurgeon was a pretty terrible one, I really laid all my cards on the table and couldn't have been more honest. And he told me I had to go see a headache specialist rolleyes I've done so much research on Chiari 0 and other bits, and I just simply asked him a question about it all, to which he disregarded all of it, and said he had 20 years of experience so he's going with what he's experienced.

      I'm really at the end of my tether. I'm supposed to be enjoying life and instead I'm trapped sad

    • b2wc97455
      b2wc97455 torigrace

      Posted

      BTW- Dear Tori,

      The best thing to deal with stubborn health professional like that is by seeing your gp, tell your gp you llike to have 2nd opinion (your gp will fully understnd this!!!, chiari is quite a rare condition) let your gp dealing with your ns directly, make appointment to see your gp, explaining to your gp what do you want, following by letter of what you have discussed (i.e: that you like to see Mr G.Flint - I had asked Mr Flint to head a chiari project in my area, as my opinion, we need to raise the level of awareness for our health care professional about chiari in our  - and Mr Flint has a wealth knowledge of this field) that way.is less stress for you, you still have a good relation with your local NS, coz you never know, if you have to go for OP to Birmingham afterthat you might need to be checked post op, you might have to go to your local N S..and having a good relationship with your local health care professional still important??? that is my opinion

    • viola01
      viola01 b2wc97455

      Posted

      I have heard Mr Flint is amazing. When I asked my GPS about a referral and 2nd opinion he just put me off. There is no real communication and it is hard to know what to do for the best really. I spoke to someone at the Anne Convoy Trust and she was helpful. Kind, anyway. It is a mixed and convoluted scenario in the UK. I have had two black outs whilst at work resulting in temporary blindness in one eye. The first time it happened an ambulance was called because I could not speak properly and I went to a and e. The consultant ruled out a stroke though the minute he knew I had syrygomyelia because those symptoms mimic the ones I had. When it happened again I did not bother calling a doctor. It is hard to convince the medics your symptoms are detrimental to health even when they happen in front of an audience (embarrassingly so). Another appointment with the neurologist awaits in March but that is only after my having to call the Secretary endless rises. ..poor thing. He even said there is nothing they can do. What do you you do then?
    • b2wc97455
      b2wc97455 viola01

      Posted

      Hi Viola, I am sorry to hear about your suffering, to b honest with you..if you are in tha much pain..I personally..will not wait till March..if you have fit again..call the ambulance again..let them keep you..they know you have thsi condition..dont let them discharge you..tell them that you are unwell..they should not discharge patient/s that stated they are unfit (its against the law)..and your NS will have to see you..on the ward while you are being admitted..let him know how do you feel..you read on the web site abut your condition..you like to have decompression..you would like to be reffered to ... (check with Anne Conroy..) the health care professionals do not knkow how do you feel, its only you know how do you feel, and you are incharge of your wellbeing? If I feel better, I can give so much to people around me, If I am unwell I AM useless?, whats the good for every one..for community? so be positive..be assertive..we had paying so much taxes.when we ill..its only fair that we should be looked after ..we are paying our NI?
    • viola01
      viola01 b2wc97455

      Posted

      You are right of course. So kind of you to reply and thank you for your helpful comments. I should be more assertive. I am in every other respect of my professional life. Ridiculous how I'll health makes you disempowered. Appreciate your support very much.
  • gill17966
    gill17966 torigrace

    Posted

    Hi my daughter has had Decompression surgery on 19th of Jan she is 19 yrs .She has suffered for around 10yrs . She was only diognosed in oct with chiari She saw Neuro consultant Tom Carroll in sheffield Hallamshire hospitial fantastic man she went in hospitial on fri had op fri and was home on the Tue and is doing great she is nt paikn free she isnt in the pain she has always known she can laugh and her head isnt so painful I as a mum have a lot to thank out surgeon for hope this helps x

     

    • b2wc97455
      b2wc97455 gill17966

      Posted

      Hi Gill,

      I am really pleased to read about your daughter news, your daughter is so lucky to be operated so quickly....is your daughter on  medication at all now, does she has to go back to have the stictches out?...or does she has to be seen again with Mr TOM cARROL, IS HE CHIARI SPECIALIST?

    • torigrace
      torigrace gill17966

      Posted

      Hi Gill, lovely to hear from you. So pleased your daughter had treatment and is on the mend. As a mom that must be so comforting and you must be relieved! 

      Do you know how big her chiari was? Just curious as mine is quite small.

    • gill17966
      gill17966 b2wc97455

      Posted

      Yes tom Carroll is a chiari specialist ,She had her staples taken out 7 days after surgery ,She is only taken paracetimol now where she was taken all sorts before the op 

       

    • torigrace
      torigrace gill17966

      Posted

      Gill I think that is wonderful news!! I know what it's like taking a truck full of medication and the toll it can have on you. So happy she is doing so well smile
    • b2wc97455
      b2wc97455 gill17966

      Posted

      Fantastic Gill.sp glad to hear that, the pracetemol you give her, is it each day, or when she ask yhou coz she feel pain?, can she now start doing normal think ( I suppose slowly?)
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