Living with Chiari from my perspective

Long Post Alert

Hello from South Africa.

I am new to this forum and wanted to share some of my story.

I was recently diagnosed with Chiari in June of 2020, yet I have been suffering with symptoms for the past 10 or so years. I had no idea what Chiari was until my diagnosis.

I had symptom after symptom and had been to many different health care professionals for many different treatments. I think what sparked the onset of Chiari for me was neck trauma. I use to ride horses in high school and flew off my horse a few to many times, then in my early twenties I had a few car accidents mostly bumper bashes, over a period of about 5 years. Then the most recent car accident in October of 2012 was the one that I think sparked everything off, I was lucky to only walk away with what I thought was just whip lash, as my car was written off, alas I was very wrong.

I started suffering from IBS and was diagnosed by a gastroenterologist which was the first big symptom change, regarding the IBS I have seen nutritionists, dieticians been on many specific eating plans, then in the last 2 years I managed to find a general physician who specialises in Nutrition and I am still seeing her on a continuous basis, but I am getting ahead of myself.

After the IBS about 6 years ago (2 weeks before my wedding) I woke up with this ringing in my ear. After various CT scans, hearing tests, many GP visits and 2 ENT’s later I was diagnosed with an enlarged jugular bulb in my right ear. They had been treating me for an ear infection for 2 years. my symptoms for this were loss of hearing in my right ear tinnitus and vertigo which was extreme in my first pregnancy, which I had severe morning sickness back pain which is supposedly normal.

All the while in-between the Tinnitus, Vertigo, IBS I also started getting migraines, light sensitivity, noise sensitivity, temperature sensitivity less frequently at first, but they were ever present. I was told by various, Chiropractors, Physio therapists, Bio’s, sports massage therapists and GP’s that the migraines stemmed from my neck muscles which were prone to going into spasms from all the whiplash.

Bring on my second pregnancy which was a living nightmare! Don’t get me wrong I am so thankful for my beautiful children, but the pregnancies were rough! I had migraines almost every day and could not treat them, I had severe morning sickness for 9 months and the cherry on the cake was when I got chicken pox at 35 weeks pregnant, I was in agony for 9 months and hospitalised 3 times in my pregnancy for non-pregnancy related symptoms and pain.

Another symptom which started developing in my first pregnancy was carpal tunnel syndrome which I thought I developed because I am a graphic designer. I went and saw an orthopod and got a variety of wrist braces for, none of which helped. All of these symptoms presented themselves on and off over the past 10 years sometimes singularly but mostly simultaneously they would flair up.

My whole life I have suffered from sinus and pressure headaches which I thought was due to sinus as its hereditary in my family and so is the IBS. My hair has also always been very sensitive to touch, brushing my hair most days feels like I am pulling all of it out and trips to the hair dresser are never that fun because I would always come home with a pounding headache.

As the years and symptoms progressed I honestly eventually thought I was going mad, I didn’t understand why my body was so broken, it felt like it was failing me most days. I am generally a positive person but constant pain and people always commenting “Oh my word why are you so broken” or “you must be a hypochondriac” eventually starts wearing away at you mentally. It gets exhausting, not to mention the actual physical fatigue, which I thought was because I am a mom of 2 young kids, I keep fit, work from home, you know normal mom, wife life. I honestly thought maybe it’s all in my head maybe I am going crazy.

Then in the past year my migraines have been getting worse, to the point where I was man down weekly, sometimes 2-3 times a week. Thank the Lord for my amazing supportive husband, he convinced me to finally go see a neurosurgeon. I was in his office for 10 minutes and I got my chairi diagnosis, he looked at my MRI from 2017 which was requested from an ENT which they used to diagnose the Jugular bulb from and there I had it! A reason for the constant muscles nerve, neck and back pain. It felt like a light went on, physical evidence that I wasn’t some nut job who lived in an imaginary pain filled world. Needless to say he wasn’t very informative and started rattling off about surgery and a craniotomy so I hit the pause button and said can we rather get a new MRI and go from there. I still need to go for my second MRI which we are busy saving for as my medical aid scheme doesn’t cover out of hospital MRI’s. We also had to change medical aid schemes because the previous one we were on made use of network hospitals and doctors and I need to be able to go to any hospital and any specialist in case I do ever need to go for the surgery. The new medical aid being the nice guys they are put me on a 12 month waiting period for anything related to anything neural, spinal and IBS, what champs!

In the past 4 month since my diagnosis I have been doing a lot of research and trying to educate myself as much as I can about Chiari. I have changed up my exercise routine to strictly low impact and have been working with a bio to adjust my posture and strengthen certain muscles in my neck and shoulders to keep my head in a better position to avoid more pressure and compression on my upper neck and spine. I was recently on amitriptyline and magsalts for pain management for the migraines because migraine kits and anti-inflammatories were wreaking havoc on my IBS they also were not working as well any more, but my body really didn’t enjoy that, it made me gain weight, my hair started falling out and it made me very foggy. I have been off of the amitriptyline for 2 months and I am now working with the specialist nutritionist which I mentioned earlier for a more holistic approach to pain management. I am now taking the advanced Bio-Curcumin which is a natural anti-inflammatory, a concentrated neural magnesium supplement and very good quality Omega’s. It’s been a very costly exercise but the supplements are helping with pain it’s not as acute or sharp and my concentration is better, my mind has been clearer and the flair ups are still frequent but I am able to manage them quicker and better. I still get tired a lot but it’s a work in progress I guess.

I have been taking note a lot more and realising I had more symptoms than I realised, chronic fatigue, lack of concentration, forgetfulness, brain fog, mood swings to name a few. I have also started taking note of what sets off a flair up and noticed how sensitive my body can be to change, the weather or my surroundings etc. It has really been a wakeup call. My husband has also been educating himself as it not only takes its toll on myself but on him and the kids too. When I have a flair up he has to pick up the pieces and carry on without me. I have gone through many moments where I have been angry and sad as this condition robs me of precious time with my family and quality of life. However I have also realised how lucky I have been and it can always be so much worse. I try to remain upbeat and I will not let Chiari conquer me!

I know I have left some things out but that in a nutshell is what my journey has been thus far, to be continued I guess…Onwards and upwards.

2 Likes

“I honestly thought maybe it’s all in my head maybe I am going crazy.”

THIS!

Welcome, Bronwen, to our Chiarisupport.org, a club nobody really wants to have to join. Chiarisupport is part of a larger network, BensFriends.org, which has over 40 sites. I and my ModSupport colleagues Sharon, Merl and TJ, work on all of them, and “I honestly thought maybe it’s all in my head maybe I am going crazy” is probably the most common thing people say when they arrive.

We are so glad that you found us! It’s great to see you jumping in with both feet. We have a saying around here, “To get support, you have to give support” and you’ve made a great start.

All the best to you

Seenie

2 Likes

Thanks so much, I am very glad to be here, its really nice to have people to relate to! Its a long difficult journey and its comforting to know we are all not in it alone. All the best to you too! :blush:

Oh how I can relate… I remember symptoms back to my youth… Soooo many years of massage Therapies, and feeling like an old person in a young persons body. coughing and bracing for the intense oain…The headaches and neck aches and zero energy, dizzy, cant think, and the list goes on and on . Could never wear halter top or heavy coat weighing down on my neck … well, if I start I will never end with the many symptoms… my first MRI that detected was in my early 20’s but MRI dr just said I have sagging tonsils (and told me not ones in mouth) then he said headaches may or may not get worse . and never was said or spoken about again … wasnt until 50’s my friend announced she had Chiari… I looked it up thinking poor girl , what is this … and :scream::scream::scream: Im like …THIS IS ME 1000% … I wwnt to my dr. asked for mri and told her I had chiari … (and spelled it for her) she sent me to neurosurgeon and he confirmed … They recommend surgery as well but I havent fully decided and covid came along .
Thanks for your story

1 Like

Dear Bronwen
Do your experiences sound so similiar! I went 10 years misdiagnosed before properly diagnosed with Chiaris. And, my Chiaris was also triggered by traffic trauma - not one sudden event, but several years of repetitive skull-bumping-on-the-roof of a van. (thanks to pot-holed roads in a 3rd world country)
I also had symptoms that showed up all over - IBS, irregular heartbeats, dropping blood pressure, etc… I was very much near the grave when I moved to a new state and met with a Chronic Fatigue Specialist who told me I had Chiaris - NOT CFS. Whew. I did have the decompression surgery in 2012, and recovered 75% more or less. I still have permanent brain stem damage (that’s the part of the brain that gets the squish - thanks to oozing cerebelum). But, I’m so grateful to have that 75% back!

1 Like

Thank you for the response, if you don’t mind me asking how long did it take you to recover from the surgery?

Thanks so much for the response there is at least comfort in knowing we aren’t along in this right! I am also still deciding on the surgery and looking into other treatments. Take care of your self.

1 Like

Dear Bronwen,

My recovery from decompression surgery actually took years, and improved by 2-hour increments. My neurosurgeon told me that the difference between the healing of the nervous system and bone,muscle, etc… is that nerve healing is like a roller-coaster ride. No gradual healing, but highs and lows. It was about two weeks post-surgery when I got 2 hours of feeling completely normal and pain-free. For the first time in 10 years, I was pain free! But, it was only 2 hours, and then all the pain and disability returned once again - for another 22 hours. For about a month, I got 2 hours of pain-free life. After a month, I started to get 4 hours of freedom from pain.
As the first year moved slowly along, I was eventually up to a full day, a full 24 hours of being back to normal - which was followed by 3 days of old agonizing symptoms. This went on for about 4 years until the improvement just stopped. Now, I get 3 good, normal, productive days with one day where all the Chiari symptoms put me flat on my back for the day. Also, every 12th week, I lose the entire week to the Chiari symptoms. I don’t know why the return of the symptoms are so numerically unwavering; every 4th day and every 12th week. I’ve been that way for 6 years now, and I think this condition is going to be permanent. The good days are very good - but I can do things that can trigger the sudden onset of all the Chiari symptoms; usually anything high-stress, adrenaline causing activity, high emotion. extreme physical activity can trigger symptom onset, but not too often anymore. On my good days, I train extremely hard for racewalking & powerwalking races, and that intensity of workouts don’t seem to trigger a complete collapse.
I have not met another “Chiarian” who has this same pattern of returning - or unhealed - symptoms like me - the every 4th day and every 12th week. But, no two of us heal the same. I’ve met other Chiarians who have healed 100% from surgery, and others who’ve healed only 10%. I say I’ve healed about 70%-75%, and that’s 70% more than I had pre-surgery! I’m happy with that.

Hope this helped.

Beth

1 Like

Hi Beth,

Thanks so much for sharing your recovery process, I have managed to find a neurosurgeon who deals with Chiari, he has treated my cousins little girls who has many neural challenges, so I am at least one step ahead. I am also looking into osteopathy.

I hope your healing journey continues to get better!