Hello everyone .just thought I’d say hi from UK .diagnosed in April this year after 4 months of severe head pain and a range of other issues Currently on topirimate which seems to be helping to control the headaches but still have so many other issues with nerves ,foot pain ,dizziness ,memory and so on . Can’t seem to find much support in the UK .
And I haven’t really been offered much advice don’t know if this is a country thing 
Anyway Hello
Hey @Helzbellz77,
Welcome to Ben’s Friends.
My name is Merl and I’m a member of the Modsupport Team on our network.
I don’t have chiari, but deal with another neurological issue which presents with many of the same symptoms. I have a growth which has blocked the aqueduct and caused the cerebral spinal fluid to build up within my skull, a condition known as hydrocephalus. I’ve required a few neurosurgeries to try and manage it all and although the fluid issue has been dealt with, the flow on effects have been many and varied.
Some medicos have said my symptoms are ‘unrelated’ and sure some of them maybe, but some are clearly related to it all ie “…dizziness ,memory and so on.” I think that because it is all ‘neuro’ related often giving clear “Yes/No” type answers can be difficult because how our brains react can be very individual.
An issue with some medicos I have found is that often the conditions related are found in early childhood, so trying to find services as an adult is often outside of their knowledge. I also think that often the medicos will try and minimise with statements like “Well, it can’t be THAT bad…” as I’ve often said “They have no clue just how BAD “BAD” can be”. And some of those headaches are just 'WOW" intense. I glad you found a treatment, Topiramate, that is assisting. Long may it last.
Merl from the Modsupport Team
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Hi there I hope you are having a good day , my first neurologist simply told me I had chiari ,told me not to cough , strain ,sneeze and said it was just mild and sent me off . There is nothing mild about any of my symptoms ,and I felt quite offended to be honest that he brushed it off so quickly after all the suffering I have been going through. I was unable to do anything not even step off a step without the pressure in my head feeling like it was going to explode yet it’s just mild … I can’t go to the toilet with my head hurting, can’t wash my hair without pain ,my left foot is always hurting but yet just mild . I’m seeing a different neurologist at the moment but Im not sure she really knows that much about it . She’s lovely and she’s giving me little exercises to do to help with vertigo etc but everyday still brings a range of symptoms.
There doesn’t seem to be as much awareness here , I couldn’t even purchase a wristband so even designed my own Chiari awareness vest as noone has a clue what it is when I tell them . I don’t want to moan everyday to my husband about all my aches and pains and worries so I just plod along . I’m also really concerned it’s something that will get worse and surgery scares the hell out of me and isn’t a route I want to go down .
And I totally agree to say "it’s not that bad " is beyond a joke.
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I’ve found that with many neuro symptoms the medicos are often ‘not sure’. I’ve had many of, what I call, pseudo diagnosis. With lots of ‘well it could be…’ type answers but nothing direct. For me it wasn’t until it became an emergency situation that they fully investigated.
Now, I want to add a BIG dose of caution here, but can you find a chiari specialist. Someone with specific knowledge. I know some neuros like to make out they ‘know-it-all’. By some opinions if the herniation is less than a certain length, then your symptoms will be minimal BUT if you go read through some of the stories here you’ll see that this is wrong. Some can have minimal herniation yet have no end of symptoms, but then some can have a large tonsil and minimal symptoms. I think finding a neuro with that sort of background with chiari is fairly important.
Trying to explain neuro pain… …when you learn how to do that, can you please tell me how to.
I’ve gone along to Dr’s appointments, trying to explain it all and they often look at me as if I’m joking or partaking in hallucinogens, making comments like “Well, that just can’t be happening” but it is. For me, one of my primary headaches I often explain as someone shooting a steel bolt, from the back of my skull out through my eyeball. The side of my face droops and my eye closes up and I have people say to me “Ohh, you don’t look so good…” “You want to have a look from this side” is what I want to say, but instead I say something like “Yea, got a bit of a headache”. They have no clue.
And yes, it very well could. The best way to manage is to keep yourself informed. Keep getting regular scans. Being that you are symptomatic already, I’d suggest getting a diary and mapping out your day, your diet, your activity, your medications, your symptoms etc Write it all down. This can help identify any patterns with your symptoms, it can help work out what works (and what doesn’t) for you. It can also show the medicos that you are being proactive in your own care. I document everything now, if I have a scan I get a copy of the report. If a dr suggests a treatment I write it all down. Then if I get referred to ANOTHER specialist I don’t have to repeat all those same tests/scans/treatment theories.
Merl from the Modsupport Team
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Yea I have already heard that alot "it might be the chiari …it might not " no definitive answers which is what we would all like I guess .
As for getting regular scans I’m not sure how to do that the NHS system in UK doesn’t work like that you need refferals etc then long waiting times Iv had one and that was February and that was last resort for hospital after going up and down to A&E for a month thinking I had a brain tumour as I was in so much pain . They done a lumbar puncture before they carried out MRI . And after diagnosis I read they shouldn’t of done that .
I have been logging things when I remember too. Unfortunately my memory has got really rubbish too "might be the chiari might not "
I haven’t even got a copy of my scan and when I asked my neurologist the size of the chiari she said she couldn’t really tell by the MRI . So I feel I’m in limbo at the moment not knowing what to ask or what to do next.
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I am thinking that another specialist is indeed the answer but make it a neurosurgeon. Neurologists don’t have the training to decide if Chiari is “serious” or not! Take it to the folks who can. Good luck with your Chiari journey.
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Yes I have now been referred to a neurosurgeon but surgery isn’t a route I want to go down yet . I want to learn to manage it as much as I can for as long as I can before I do that . But I would like to know if all thee issues are infact down to my chiari or not ,what I should avoid etc . I’m not really sure what I’m going to ask the neurosurgeon yet but I’m going to make a list of questions .
Any suggestions on where to start
I never did figure out how to manage Chiari symptoms before I had surgery. The physical reality of a brain hernia was too big of a bummer for drugs, exercises, rest, or diet to make much of a dent. A neurosurgeon is going to have a look at your MRI (the longitudinal view and the horizontal view), listen to your list of symptoms, and decide if you would benefit from surgery. They can talk about the risks and benfits of surgery, the length of surgery, and how long recovery is. They will also talk about how Chiari symptoms don’t tend to improve with time - maybe when you are really old and your brain has shrunk. I am not sure if my neurosurgeon was kidding or not, as I was not in a humorous mood during my visits with him! Not sure what you want to know from the surgeon. A concise list of your symptoms would be a big help. Have a look at reputable Chiari sites for a large list and see how you stack up.
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I’m terrified of surgery and just keep telling myself if Im going to avoid it asking as I can forever if possible ! I have no idea of the size or if it even matter what size it is .
Did your surgery work without any issues ?
Iv read so much about it not working and so many stories of repeated surgeries your all so brave honestly .
And I think this is my problem because I don’t know what I want to know myself I just feel a little lost you know ,like in limbo . Sent off being told you have something you never heard of ,doctors not really knowing nothing themselves ,given tablets that cause their own issues , and not really having people around you that relate to your issues . I told my neurologist my symptoms and she brushes it off and says "well there’s not much that can be done as your chiari is quite mild " MILD?
I actually took offence to that as mild is not a word I would link with my chiari issues . They’ve been bad enough for me to write my last wishes for my children …is that mild
Can chiari symptoms just stay the same ? Or will they always worsen .my doctor told me not to ,cough ,sneeze , poop, laugh or gain weight is this the usual advice
I found fear of surgery is a big deal. I broke it up into manageable pieces. It still was not ideal but I put plans into place - finances, aftercare, drives to appointments. It took a lot of asking others for help but was doable. The fear is often based on not knowing and also not asking for help. Decompression is a major brain surgery and can motivate others to offer assistance. My husband and I organized ourselves so that when people offered help, we could say, “yes, thank you, we need a driver on Tuesday for appointments” “we need a meal for Saturday, that would be great” The more specific we were with requests the people people were able to offer what we needed at the time instead of saying “thank you for thinking of us” in response to a vague “If there is anything you need let us know” , we had a list we could pull from. Tapping into friends, family, neighbours, and chuch made a difference. Also it is not important to convince people how bad it is. I found that “brain surgery” is enough detail for most people. Chiari symptoms are wonky, all over the map, and do not make sense for the average person. I did not find it necessary to get into the details when asking for help. People do not get brain surgery for the fun of it! Good luck in wrapping your Chiari brain around surgery. Do keep in mind that having a rare, poorly understood condition affects our well-being. A counsellor may help with getting your thoughts rounded up. Even something like online Eye Movement Desensitization and Reprocessing (EMDR) Therapy Exercises can help to stabilize mood so we do not feel like we are flying all over the place
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Yes it’s a huge deal and scares me massively!
It is very hard to describe my issues to people Including my husband as there is so many and as you said their “wonky” just so many .
Plus "I look okay " sometimes I begrudge looking okay and want people to see the pain 
.
Never heard of EMDR will have a look into this .thankyou for all of your advice It really does make a difference to have communication from someone that actually really understands .
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