Update after finding out I have Chiari Malformation

[MsWhistledown]

Good morning lovely people,

I hope you are all doing well?

You were so supportive and kind to me when I last posted about finding out I had Chiari Malformation and didn’t have PMR. So, I thought I’d update on what has been going on since then.

I went back to my GP and he has been so supportive and agrees that the progressing symptoms I am experiencing are very likely due to the Chiari. So, he did something which might be seen as a bit naughty and referred me to rapid diagnostics which isn’t usually used for my symptoms or condition. But he knew that if he referred me to neurology I would waiting for at least 9 months to be seen.

Low and behold, within 3 days I got an appointment with the rapid diagnostics team. Nearly fell off the bus seat I was sitting on when I listened to the voicemail message.

Saw the Doctor at the hospital and she was amazing! Gave me a full MOT. Cancer checks, blood tests for everything, including bone health, inflammation markers, anemia, hormone levels. She referred me for an MRI C Spine including head to see if Chiari had changed.

Spoke to same Doctor this morning but unfortunately my MRI results are not in yet. But she did tell me that she looked back an MRI I had back in 2018 at the same time the same hospital found the Chiari malformation and they found that I had disc bulges in my neck, in my C4-5, 5-6 and 6-7. It was noted that I also had a straightened spine with lack of normal curve.

Guess what?! I wasn’t told about this either!! I was just told I had normal wear and tear!!

So, I continue to suffer with awful neck pain, pain in my shoulders and between my shoulder blades. The doctor said it is likely that the disc problem found in 2018 is the cause of the pain and it has probably got worse. But we have to wait for the latest MRI results to be sure.

It just amazes me that I wasn’t made aware of these findings. I was told I had chronic migraine back in 2018. Given some heavy duty medication for it and sent on my way. Why would I be treated like this? Was it because it saved them money by sending my on my way and not referring me onto the correct services to treat my issues or was it just incompetence plain and simple?

If I had been given this information back in 2018 I doubt I would be suffering as much as I am now. It just makes me furious. I feel I have been let down by a professional I put my faith in.

At least now I am getting answers and I feel if it is a cervical disc problem then I know I can make steps towards reducing my pain and maybe find that the Chiari isn’t as bad as I thought and something I can manage without surgery.

I have ranted on a bit so I will leave it there.

Thanks again for reading and your support. It means a lot. I think I’m seeing a crack of light at the end of the dark tunnel I’ve been trapped in for too long. 🌞

[PMRpro Ambassador]

I fear it doesn't surprise me at all - and a complaint would be a perfectly reasonable action in the hope it doesn't happen to anyone else. All it needs is one lazy person and something is missed or not noted properly. The trouble is, too many patients simply don't have the background knowledge to challenge someone in this sort of situation.

I'm so glad you now have someone who appears to be a True Detective on your case. I wonder if there is anything that can be done in a reasonable timescale to make it all somewhat easier to live with. Do keep us up to date.

[MsWhistledown in reply to PMRpro]

Thank you. A complaint is in the pipeline.

[DorsetLady PMRGCAuk volunteer]

Thanks for update, and good to hear you are getting some answers...

[MsWhistledown in reply to DorsetLady]

Thank you ☺️

[Blearyeyed]

Your Chiari Malformation will have been at the core of the disc problems, because that is one of the most common problems experienced by people with Chiari 1.Those neck and spine issues also cause the most common add on syndrome of Chiari1, Chronic Migraine Syndrome.

So , although it doesn't make you feel any better, and you definitely should have been told of the results from 2018 and probably checked for Chiari at the time , at least you know that the symptoms you are suffering would be part of the progress of your condition anyway and sadly you'd have probably received the same pain relief and they wouldn't have done much more than suggested gentle exercise and monitoring.

Unfortunately, Chiari , much like EDS , are both little understood and no doctors actively see the red flags and test for them as they should which is why it is so hard to get a diagnosis, get regularly misdiagnosed, or given inappropriate care with them.

It wasn't naughty to be sent for rapid diagnostics , that should really be done with Chiari to try and reduce the chance of further issues developing and to get treatment as soon as possible, but unfortunately most GPs don't realise that either. Your GP sounds proactive and that's a good position to be in.

Try to create a partnership with them now and do some of your own research into the condition and local resources for it to show to your GP and to get them to refer you to as they will often have no idea what is available for you to try either in terms of pain management medication or therapy courses nearby because they seldom treat people with the issue you have.

Yes , you have a cervical disc problem and chronic pain and chronic migraine syndrome but you have these caused by Chiari1 so more care and attention needs to be taken in the type of methods they use to treat them than is used in treating people with standard causes of these health issues to prevent the problem getting worse.

As you can see, part of the reason your disc problem on the 2018 scan was not reported to you and your chronic migraines were the only thing treated is because that's what they would choose to do for a person with no previous chronic health issue diagnosis that could be made worse by leaving it with self care advice as it appeared "non urgent" for an average patient. That's why it needs complaining about and more awareness needs creating in your local area about the condition and red flags doctors should not overlook.

If you do get fast tracked to other departments, particularly rheumatology or physiotherapy, make sure that you call and request to see senior consultants or senior rheumatology physios with experience of treating people with Chiari, and even then double check what information they give you against the guides on the Chiari charities websites before beginning the options advised.

And don't do exercises that you know cause you a flare of pain in the neck or spine and trigger your migraines no matter what the therapist says, and in fact if they push it , or just give you " one size fits all" exercises ask to see someone else, as they don't know what they are talking about and will do you more harm than good .

Graduated and Gentle Exercise is key to controlling the progress of things like Chiari 1 , EDS and Ankolysing Spondylitis but it must be the right exercises in a very gradual way whilst making sure you don't overextend or twist your neck. spine and joints and avoiding certain common movements otherwise you trigger bone movement and pain that can take weeks to recover from.

Just following the ABC of physiotherapy often offered by Juniors ( and some outdated or less knowledgeable seniors and trainers too) won't work, gets in the way of your quality of life but also prevents you from managing to maintain the strength you need. It's vital to listen to your body and get the right therapist to do that. A hydrotherapy referral would be useful but aqua exercises are also easier and more productive to do with these conditions.

Hope you've found some good forum or support groups either on HU , locally or elsewhere to help you come to terms with your illness but please do keep coming back if you need a chat and to update us. Take care , Bee

[MsWhistledown in reply to Blearyeyed]

Thank you Blearyeyed. I did not know that the Chiari would cause the disc problems. It is frightening that it is causing so much damage and pain! What frightens me more is the complete lack of knowledge from these doctors. Although, the doctor from the hospital I spoke to was very good I know she is going to say it is bulging discs. She already dismissed the Chiari will be causing this pain. So, I guess I’m going to have to keep battling on to get the right treatment.

Thank you for the tips as well. I was thinking about trying some exercises but sounds like that is not a good idea right now.

Unfortunately, there isn’t a support group for Chiari on here. But there are some on Facebook. And people’s stories on there don’t fill me with a lot of hope.

Just got a keep on going.

[PMRpro Ambassador in reply to MsWhistledown]

thebraincharity.org.uk/cond...

Go to this lot for some sensible and reliable advice - and I'd avoid FB because you tend to find some very strange offerings there and mostly of the end of the world variety! It has links with the Walton Centre - can't get much better than that!

[MsWhistledown in reply to PMRpro]

Thanks PMRpro! Really helpful. I have the next week off work so will be contacting them for some advice and best way to move forward with all this.

[Harrisonboy]

First off, I am praying for strength for you I am.in a similar situation, and I don't want to muddy the water, but want to give you some advice so that you may afford some of the disastrous complications that can happen from mis diagnosis.

I live-in the US and I have been suffering from severe symptoms similarbtobyoura for 5 years. Debilitating headaches 24/7.

One of the things that can be causing Chiari is a spinal CSF leak, and not really Chiari .

If you will go to Inspire.com, and loom under the CSF forum, there are lots of discussions about Chiari and Leaks.

I pray this helps you, and you get the miracle we all need.

[MsWhistledown in reply to Harrisonboy]

Thanks Harrisonboy, I am sorry to hear that you are going through such an horrendous time. I have confirmation that I definitely have Chiari and now awaiting a new MRI result to see if there are any changes. I won’t give up. I’ll make sure I get to see the right people. Thanks to the people on this forum who have been so supportive.