Newly diagnosed

Hi,

My name is Jo, I live in the UK and I'm 23 years old. I found out today that I have an abnormal MRI - "tonsillar descent of 8mm" - 8mm Chiari malformation. I do not yet know what the neurologist is going to do with me. I'm waiting for a follow up appointment.

I'm plauged with a lot of symptoms, which everyone put down to chronic fatigue syndrome. These started back in 2011, and have gradually got worse. They are now greatly affecting my ability to function. I am currently off work sick. They have got a lot worse over the past 3 months.

The symptoms are as follows: blurred vision which sometimes turns into double vision, severe headaches at the back of my skull, which spread towards the front of my head (this feels like this horrible pressure), migraines, loss of sense of smell and taste, choking on food and liquids, hoarse voice with coughing, repeat chest infections and pneumonia in 2012, "brain fog", cognitive dysfunction, difficulty with word finding/having conversations, balance problems/constantly tripping over and walking into things, bowel and bladder issues, dizzyness/vertigo, fainting spells, tachycardia, neck pain, muscle weakness and pain, tinnitus, numbness in my fingertips and toes, chronic pain (am on a lot of meds), severe crippling fatigue, memory problems, nausea, depression, anxiety, insomnia, problems with co-ordination, chest pain. There's probably more that I've forgotten.

I keep forgetting how to spell words as well...have to keep using spell checker :-S.

I have a lot of medical conditions....I don't know whether I'm allowed to list them or not?

I'm also on 23 medications, again, I don't know if it's okay to list those?

I've joined this website because I'm feeling quite confused, anxious and could do with some support and advice. I'm quite scared about this 8mm malformation.

Sorry that this is quite long

Jo x

Welcome Jo to a great group!! You have found the rite place to support you… All your symptoms are all of wich I suffer from, EVERTING you have stated!!! I have CM1and Craniol instability,( I am going to have surgery next week)… You need to be strong don’t let this beat you!! You are young and that is in your favor, you need to find a GGOOD NEUROSUGENT that understands all about Chiari Malformatiom as well as Cranio instability( aka CCI) and Syringomaelia, please make sure you Doctore knows about all realted issues with the brain it’s very Important… Other wise you can end up like me I am going to have my 2sd brain surgery because the first Doctor I went to, 2 yrs ago only knew about Chiari and didn’t know I had also CCI, and I was told by my knew NS that he should have never done tha decompression without fixing the instability…almost all of what you describe is what most of us suffer too!!! Don’t worry and don’t let this defeat you, there is help and thighs will get better after surgery… And don’t forget what Emmaline said also get check for EDS

Keep in touch let us know how this work out for you , Good Luck !!!

Hi everyone,

Thanks so much for replying :-). It's nice to know I have support and people that understand.

I'm currently awaiting assessment for ehlers-danlos syndrome; I have hypermobility syndrome and symptoms of dysautonomnia. I also suffer with: chronic fatigue syndrome, fibromyalgia, asthma, migraines, osteoporosis, endometriosis, kidney stones and a swollen kidney, repeat chest, tonsil and urinary infections, vitamin D, B12, iron and folic acid deficiencies, depression, anxiety and am having investigations for a sleep disorder. I also have a funky joint disease in my foot called degenerative psudearthrosis and tarsal coalition, and I fractured my back last year.

I'm awaiting surgery for a tonsillectomy, but I don't know if this will go ahead with them now finding the chiari malformation. I'm also waiting assessment for surgery to my foot, as I am on morphine for the pain I get with it, and cannot walk for more than 30 minutes.

I just wanted to know:

Is an 8mm malformation large/dangerous? Are they likely to operate even if I don't have syrnix?

What treatment options have you guys had and were they helpful?

Does a chiari malformation get worse if it isn't treated?

Sorry for all the questions, I'm just feeling quite scared and confused at the moment.

I hope everyone is okay, and thanks again for all your advice!

Jo x

Jo, you are welcome to list your conditions and meds, just no personal identifying info on images, like an MRi :slight_smile:

Some of this info is already posted here so sorry for the repetition…,

There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.

Vitamin d deficiency

Magnesium deficiency

Vitamin Bs deficiencies

Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.

Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.

Dysautonomia- Dinet.org

Tethered cord syndrome

Sleep apnea

I am glad you found us,
Jenn

Hi,

Thanks for all the help and advice :-)

I'm still finding it hard to get my head around the fact there is something wrong with my brain, but at the same time, I'm relieved there's a reason why I feel so unwell.

I am a qualified nurse. I saw my GP today, who I've been seeing every 2 weeks for 2 years, so I have a very good relationship with her. I told her about my MRI result. She said it's "incredibly rare" but that it correlates with my symptoms. She said she is "very confident" that I'll hear something off the neuro people soon. She's signed me off work for another 6 weeks, because she said I'm not well enough to be working.

Does anyone have any suggestions as to what I can do to occupy my time? That isn't energy consuming.

I've been diagnosed with hypermobility syndrome as I have a Beighton score of 8. I'm seeing a Rheumatologist in January to look into the possibility of ehlers-danlos syndrome.

Thanks for your continued help and support xx