I got back from my GP appointment this morning and cried. We discussed my blood results and he wasn’t that concerned, however he went through some old hospital notes regarding an MRI I had back in 2018 and looks like I now have my answer as to what I am suffering with and it’s not PMR.
I have a Chiari 1 malformation of the brain. This would be the cause of the past migraines and insomnia I have suffered and now the neck and shoulder pain, pressure in my head and headache along with bouts of nausea and dizziness.
I’m being referred to a neurologist but have been told it’ll be a long wait. There is no sense of urgency.
When I saw a neurologist back in 2018 for my migraines I was never told about this Chairi Malformation as a condition or diagnosis. It was very much brushed over and I was told I wouldn’t want to go down that road as it would lead to having my head cracked open. I was handed a prescription for Nortriptyline and sent on my way. This is why I am shocked today. All this time all these unusual symptoms building up over the years and they ignored what it was all along.
I just want to thank this group for all your help in trying to get me the correct treatment. At least I know what it is now even if I am finding it hard to come to terms with.
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MsWhistledown
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So sorry to hear that - it is a scary diagnosis but if it needs surgery it will be done. Strangely I watched an op to correct one just a few days ago in a medical programme But I have to confess I can't remember which it was - may have been the Liverpool Walton Centre one. However - that neurologist should be reported for totally unprofessional conduct to a patient. That is NOT the way to describe the highly skilled technique required!!!
It depends on what grade the malformation is and for many patients they have no symptoms and it is only found because of an MRI being done for another reason.
Thanks PMRpro, it just all sounds very scary at the moment and I feel I have no one in the medical/NHS community to support me with this. I will just let the shock settle tonight but tomorrow I will start looking at getting hold of my medical records to investigate this and then put a complaint in. If it’s going to take too long I’ll look into going private. I think I’ve suffered long enough.
I can imagine it must have been an awful shock. I thought that Chiari 1 malformation was something you had from birth, but you don’t necessarily become aware until later on. Your doctor should have explained everything to you and given you a leaflet.
I will have most certainly have had this from birth. It’s congenital. I definitely had mild symptoms as a child but it would have never have been picked up on. The only reason it has been found is due to 2 random MRI’s. One for tinnitus in my ear and the other for “chronic migraine symptoms.” Both of which are symptoms of the malformation!
It’s has been a shock and my GP said that it is probably the cause of the migraines and nothing else. No explanation or anything. I think he realised the mistakes that have been made and that I was very upset I had not been told about this before.
They reckon a lot of people have it and never know, as they do not have symptoms. Some only find out because they have an MRI scan. Hope all goes well for you.
Tears - Tears for getting a solid reason, tears of frustration, tears of anger and tears of trepidation.
If you’ve got it in you, I think a complaint is in order. They sentenced you to suffering in the dark and potentially getting neurological damage. As for saying your skull would be split open, that’s terrible.
The trouble is with medical notes, things just disappear unless they make your personal front page news on the notes and like the media, unless it is a hot topic, it disappears. I’ve had to scour many a wad of medical notes (hospital and GP)and it’s not for the faint hearted as it is a mass of paper and bad handwriting. Medical enquiry often doesn’t go a far back as the ‘fossils’, so very well done your doctor! My hospital didn’t have my cancer or GCA on the record because anything pre-2019 didn’t make it to the computer system.
Well, there may be no sense of urgency, but you are suffering so don’t be shy to push, especially in the light of the past.
Thanks Snazzy, you are right re the tears this morning.
Letting the shock dissipate today and then tomorrow I’ll be getting started on getting access to hospital records from 2018 and then writing a complaint. I’ll also email my GP listing all the symptoms and insisting he includes the 2018 diagnosis on my referral as I am not sure he will! And I also want it listed as a condition in my medical records. Unbelievable what we have to go through to get proper treatment to feel well again.
Thank you - I will most certainly be pushing for the referral to be hurried along. Otherwise I’ll go private.
You may not consider yourself as having strength of character but I can see this in the way you write. I think you are right to pursue things: you will feel more in control if you involve yourself in managing your own health as far as you can. Well done and very best wishes. 💐
I agree with 123-go that after all this, you come across as determined to fight back against this deplorable negligence. Why is it that the clinical profession treat us as unintelligent beings who wouldn't understand nor be interested to know the absolute truth about our condition? It makes my blood boil. I sincerely hope you get the information and support you deserve. Also a massive apology from those concerned. My thoughts are with you. Lots of luck.
I would think that a single appointment with a neurosurgeon might be worth it to find out if this is something that needs urgent assessment and treatment. Unfortunately I suspect that private neurosurgery would be expensive although the Walton Centre in Liverpool has Chiari malformation specialists and takes private patients so contacting them to ask the questions would be a good start.
Ms Whistledown, I feel so shocked and saddened for you. If you can get a private consultation with the specialist, as PRO suggests, you will have the opportunity to discuss your case in more detail and, possibly, push it forward under NHS. After all, you deserve it after all this time and suffering.
I don't know if you have access to all results like we can here in Canada.It costs me 40.00 for a year.It makes me feel better to know they don't miss anything.I put down the questions I want to ask as well.I do hope they sort this out and get you out of pain and well!!!! Obviously there has been some neglect.
Obviously this is very upsetting news and they really should have informed you of the condition early so that you could have received better pain relief , advice and support.As , Pro says , the Walton Centre in Liverpool, where I attend for my Migraines and EDS is one of the hospitals that deal with the condition . But there are specialists across the UK so it would probably be worth researching which hospital near you has the best reputation with the condition and request that you're referral via the GP is to be seen there.
I have a few friends with Chiari 1 Malformation, they have varying degrees of symptoms and difficulty. Two have fibromyalgia and Chronic Migraine but their pain relief and physical therapy help them to manage a ordinary life with a full time job.
What I'm saying is although , the effect of the malformation can be quite varied , surgery is not always required, and if it is the most common one , it is Decompression Surgery , and it's not quite as horrifying as having your skull cracked open so please keep your hopes up.
The surgery can make a huge difference.
Now that you know the cause , there are ways in which the progress of your pain can be resolved .
It would be worth you looking up the website for the Brain and Spinal Foundation.
They deal with questions and support for Chiari 1.
As well as having online resources they have a freephone number to a Nurse whom you could ask your questions to and help you to understand the condition , ease your fears , you could also ask them about how to find the best NHS consultants near you, or find a list of private consultants whom work in the NHS to see quicker and get on their NHS list .
The foundation also has peer support groups and a list of other support groups which you may find you want to join.
It is also worth seeing if there is a local Chiari support group in your area so that you can learn from other people like yourself.
The Brain Charity is also another UK based charity with extensive ways to help people with this issue.
Take care , I know you don't have PMR now but if you ever need to talk still come back with questions or worries so we can help you feel better if we can. And please update us on your progress , hugs , Bee
Blearyeyed, thank you so much for this. It does help to know that it can be managed and I really appreciate your reply. Thank you to everyone who has replied! I am so grateful to you all. You have really cheered me up, made me more determined and I no longer feel alone with this. You’re an amazing bunch of humans 🫶🫶🫶
I am sorry that it has taken so long to get a diagnosis but like lots of others said today it can take a long time and hopefully now you will get the treatment you need. My daughter only found out when they were looking to diagnose Epilepsy and I had never hear of such a thing before and it does sound scary... I am a little grateful that you posted this as Blearyeyed post is reasuring and will be letting my daughter know about the support groups and freephone number... She is having to wait until the middle of February for a specialist appointment after seeing someone in July... the wait can be a long one especially as she now seems to have symptoms which she didn't have before. Good luck with your journey and I hope things get sorted soon.
So sorry for this shocking news you have received.The medical field can seem to be very uncaring when we need it the most. I havent received worrying news, like yourself, but just a sense of no one really cares I echo the thanks for this forum and the ladies who encourage us to find that inner strength.
I wish you the best in your endeavour to receive the correct treatment and care you deserve.
The comments I have received have been so helpful and very reassuring. As you say the care shown is heartwarming on an otherwise lonely track. I do hope you get the help you need and soon. Xx
So sorry to hear of your diagnosis (a condition I’ve never heard of) but at least you can now move forward. it sounds like a good plan to go private, if you are able to, if the wait for NHS is too long. Lots of good advice from Blearyeyed. Good luck , I wish you well.
so sorry, as said by everyone, what a shock. Do they have a clinical support nurse in the team your under who you can contact with questions or for extra support? Some teams do and it can help to talk through with someone who knows about the condition. I wish you all the best and hope you’ll stay on and send us an update on how you’re doing 🌼
my 3 yr old nephew has just been diagnosed with a 5 mm lozenge . It has been difficult to get this diagnosis as they were resistant to do an MRI scan . His symptoms were waking from deep sleep into screaming. How ever they have chosen to observe him and not operate . I feel the that the consultant may have returned your care to the GP , but as you are reporting on going Symptoms, I feel you show be referred back for further consultation
Gosh, I am so very sorry to hear of your experience, MW. I know it doesn't help to focus on what has gone wrong in the past, but I can fully understand your need to let your frustration out in tears. I am sure that you will get some good advice on here. I just wish that I had something more positive to add. Thinking of you, God Bless, Kx
What a terrible shock for you. And so scary. Hopefully you'll have been reassured by the posts and links on here. The sooner you can see a neurologist the better.All the best xxx
I'm so glad you now have a proper diagnosis and that you can move forward in getting the medical care that you need and in turn you get much relief from your debilitating symptoms. 🙏
Like others I had to look this condition up. I have had neurosurgery this year. I was lucky to get this done via my private health insurance. I did have an NHS referral in June 22 but to date no appointment has been forthcoming. The NHS rang me a couple of times to find out if I still needed the referral. In Dec 23 I had them remove me from the list as my surgery had successfully been completed.
It might be a good idea to see a private consultant who also has an NHS list. It probably wouldn't speed up the wait for surgery but might get you on the surgical list quicker.
I had surgery on my lower spine to decompress the nerve pathways. I was scared as my surgeon talked about removing bone and tissue to free the nerve pathways. He sat and explained that the amount of bone was tiny, less than a petit pois 🙂 Anyway, it was successful and my pain has been greatly lessened.
I can highly recommend my Neurosurgeon but he is London and Essex based so might not be ideal for you. Feel free to message me if you would like his details though.
It's natural to be scared of anyone drilling into your skull but decompression might help your symptoms. There's always a risk but my surgeon was excellent at putting my mind at risk.
Glad your surgery went well.Like you say it is a nervous thing but what you imagine is far worse than the reality , and if they need to remove a bit of bone it sounds alarming but it's usually tiny.
I'm not surprised that you cried. What an awful shock and how neglectful to leave you to suffer all this time. I would be livid about such treatment. From your posts, you sound very determined and seem to have a plan of action already, so I have every confidence that you will take back control and do a great job of looking after yourself. So sorry that you have had such a horrible experience.
I'm so sorry to hear this. It just goes to underline that PMR is a syndrome - a very distinctive pattern of symptoms - rather than a disease. Most patients have inflammatory markers that suggest the underlying cause, while some do not. Given the age profile of sufferers, some will have two or more conditions. I hope you find effective treatments.
Sorry to hear this. My best advice going forward is once you have cried it out this week..that knowledge is power. So do all the research you can..and is it good to at least know WHAT it is. My neurosurgeon (had surgery in the States in August 2020) wasn't the most charming fellow, but when I had the initial consult and was armed with good questions, he had the answers. I will be praying for you, but maybe just maybe your suffering will get a reprieve here with a proper diagnosis.
Hi MsWhistlesown, I completely feel your pain as I too have just been diagnosed with this condition after 3 severe headaches, vision disturbance, tinnitus and hearing loss. Two a&e visits, a hospital stay and CT MRI's all very scary indeed. I've only known since last November as I went privately to see a neurologist as the NHS turfed me out of hospital with no diagnosis just a copy of my reports and my incidental findings.
However best £250 spent. I'm now going to see a Neurosurgeon privately too for peace of mind.
Hi BellaC79, you have been through it. Apart from the hearing loss I have suffered all those symptoms myself over the past 6 years. I am glad to hear you have found a private consultant and neurosurgeon. I hope they can help you feel better again.
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