Newly diagnosed - Chiari I malformation

[Chloe783]

Hi everyone!

Where to start?! I am 30 years old and newly diagnosed. I went to my GP with the fear that I had nerve damage from a very late diagnosis of having Vitamin B12 deficiency (pernicious anaemia) and I had a lot of symptoms that fit the bill for that, but also for this. My GP sent me to a neurologist who sent me for an MRI scan and blood tests. My thyroid was fine and everything else. She then sent me to a neuropsychologist to assess my memory and concentration (as this is quite poor). She did not inform me of the MRI findings, but sent me a letter referring me to a neurosurgeon. I then started to wonder what they had found!! I called her secretary and she said to ask my GP. My GP casually told me that I have 2 prolapsed (bulging discs) in my cervical spine, plus a 8.8mm tonsillar hernia below the foramen magnum. No associated hydrocephalus. Normal corpus callosum, normal signal intensity of the brain parenchyma with no plaque of demyelination, infarction or haemorrhage and no acute infarction.

I am a vet nurse so I knew of hernia's, but had no idea I had one myself and in my brain!!

Oddly, I rarely suffer from head aches! I am very lucky in that respect! My symptoms are as follows, but I am not sure if this is from prolonged deficiency of vitamin B12 or my hernia! They are:

Tingling in the feet, legs and hands
Memory and confusion issues
Depression
Muscle spasms
Difficulty sleeping
Difficulty waking up
Constipation (or diarrhoea!)
Sudden urge to urinate
Balance issues (stilettos are a no-no now)
Reflexes noted to be slower down right hand side
Occasional headaches but in the forehead region
Weak muscles
Dizziness
Nausea
Weight loss
Low blood pressure
Poor circulation

Again, half of these may be irrelevant but wanted to list them all. I was just hoping if someone could tell me what to expect when I see the neurosurgeon in January. I am a tad frightened by all this, I am not panicking now and I am telling myself I will have a great Christmas and I've been fine for this long, but it has been an overwhelming week! Would appreciate any help or advice. Thank you for reading this :0)

Love Heidi x

[Chloe783]

Hey Mowgrin!

Thanks so much for sharing your story :0) I was convinced I was going crazy! Finding that my new symptom seems to be saying one thing but meaning another! Getting things all muddled up haha. If you have a tonsillar hernia, does that automatically mean I'll have a syrinx? I haven't been told I have one but I don't know if that will show on a normal MRI scan (I haven't had the CINE one). I live in England but they have assured me that I am going to the best Neuro hospital in the country so that's something! Thanks for your help, was a shock as I have read some horror stories but I feel better now :0) xxx

[Mowgrin]

Hello,
Your symptoms match mine exactly!  Crazy as ever single one I have but then kept getting worse.  I even began getting numbness in my face, etc.  I have a 5/6 mm herniation but my herniation is shaped like a plug so have a Fluid blockage which can be detected by the CINE test Selma discussed.  However, my doctor found mine with specific views on my MRI w contrast.  I am not a doctor so am not giving medical advice, however, just thought I'd share how my Chiari was diagnosed. Mi am finally scheduled for surgery this month.  My doctor, Dr. Oro is wonderful!  There are a few that sound fantastic.  I just wanted to share that my symptoms kept getting worse rapidly (week to week) so glad to hear you are working to get some answers.  I was scared too but once you get a solution I hope you will feel more at ease as well. Take care!

[Chloe783]

Ahh thank you so much SelmaS for the info! I actually have 2 autoimmune diseases (pernicious anaemia and vitiligo) so that could be! My mum has hypothyroid so that's why they checked it but I dont think they tested all the things you mentioned - thank you I will ask them!

I've been reading people's posts and I too have had sinus problems for years! I just thought that was normal! I get neck pain too but I figured that was the nature of my job and poor posture.

I wanted to ask if you would advise surgery, but I guess that depends on all the things you mentioned above that they should look into first. I will try my hardest to get my neurosurgeon (when I meet him) to look for these things.

Many thanks for your help, is sad that so many suffer with this and I feel awful saying it's nice to not be alone in this, but it is comforting in a way :0) xxx

[selmaS]

  Anxiety comes with this condition as it can affect all aspects of how we feel physically and emotionally as this is the control center for  our bodies being affected.

[selmaS]

  Hi and welcome to the Chiari forum.

Much of ur list of symptoms r Chiari related symptoms as well as lupus, lymes and MS, and this is y it is very important to have a lot of testing done....as so many issues and conditions do have the same symptoms.

U mentioned u were tested for thyroid dysfuction, do u know what they tested, I ask bcuz those with Chiari r prone to get an auto immune thyroid condition known as Hashimoto's testing TSH alone make not disclose it...u need the free T3 and free T4 and TPO antibodies  along with the TSH...we can also swing from being hyper to being hypo so levels can change and appear normal so an ultra sound of the thyroid helps to to look for nodules.

A CINE MRI is also something u will want to make sure u do not have a CSF obstruction....this is more important then the length of the herniation, and too many Drs look to the length when it is the width that obstructs....

Also make sure they rule out a syrinx by doing MRI's of the cervical, thoracic and lumbar spine, this will also help rule out disk issues, scoliosis and tethered cord....related conditions r sleep apnea, ICP, POTS, and ehlers-danlos.

I was 48 when I was dx'd , and I took a little over a yr to find the right Dr for me as it is not easy as they r the only rare thing about this condition as far too many of us have it....

Know u r not alone, and we r here to help however we can <3

[Chloe783]

Sorry I forgot to say, I was also told I have anxiety after a test the neuropshycologist did and my MRI scan was just of my brain and cervical spine. Many thanks xx