Curious about others

Do any of you with Chiari work, if so how does it effect you? Do any of you get disability?

Does anyone get severe muscle aches almost like RLS & spasms? Do you suffer from extreme fatigue?

What medicines help you the most?

As far as work. I was decompred 2016, out of work 8 weeks. Able to work for 2 years fine. Last 2 years started to get harder and harder. Finally oct 2019 i was fired from a job i did for 10 years. (Personal banker and tellet) Reason was i could no longer perform my job duties.
I applied for SSD December 2019 and still fighting for that. Yes i have a lawyer and mulpile issues that all qualify for SSD. Being a college grad SS states im retrainable for something. They dont understand what and how Chiari affects the body and that ot can come and go.
As for fatigue, yes all the time. I crash around 2 o’clock daily. I sleep 9-12 hours at night.
Hope this helps you

Hi I too work but am finding it difficult. I have pains and headache everyday but say very little at eork for fear of being cut. I am battling with memory and brain fog. The disability payment here (I am in Ireland) would not be enough at the moment. Hope you find the strength.

2 Likes

Unfortunately, I had a lengthy diagnosis period and was bed-ridden prior to surgery. Brain processing was affected and has not recovered. I am not able to work in my previous health care profession nor am I at full-capacity for running a family household - my husband and kids do a lot that should be on my plate. Given it has been 7 years since my surgery and a ton of work towards improving my capacity, I am still struggling with accepting my current, decreased workload ability. I regret the years of delay on my surgery and the corresponding irreversible side-effects/complications of uncorrected Chiari compression on my brain function. I am a strong supporter of not waiting on surgery as you do not know what function will be compromised never to return. I mourn my change in ability every day and would wish others to avoid it.

3 Likes

So I am the foreman of a bison ranch. The work is super physical and really wears people out ( I am not bragging or trying to guilt anyone, I just spell out my situation to put my advice in context)The only way to hold down a job Of any sort is to have a super easy home life. My wife is so awesome, when I come home I am expected to take a shower and lay down for as long as I need. I was excelling at my position until lately. A week ago a mri found A 3.5 cm tumor growing around a vascular nerve bundle in my back. I have shut down over the last two days, and according to that I just had to endure a harsh talking to by my boss. My wife is being unfeeling and my parents and brother are just being jerks. So I have no idea how this could possibly turn out good, but I am hopeful and have faith that this is being used to make me the person God wants me to be, and I feel that way for all us Chiarians. I love you all, and am so thankful we have a community that understands. Keep hammering, and resting.
John

2 Likes

I’m so sorry thats happening or has happened to you. Chiari is tough. I think its so mind boggling cuz every chiarian has similar but very different symptoms. I’m tired of drs thinking I’m drug seeking or something. My fatigue is really effecting my family so my current neurologist is trying to get me adderall. My thoughts & prayers r with you :pray:

1 Like

No one knew about my chiari til recently I had to take 3 days off in a row cuz of a really bad flare up. I too battle memory & brain fog…which is so scary cuz I work on dementia unit. I too couldn’t live off disability I have way too many bills. I get hydrocodone & if I didn’t I wouldn’t b able to get out of bed. Chiari is tough.

Sorry to hear about the new found tumor…like chiari isn’t enough. I feel too that no one in my fam understands so they have no empathy towards what I’m going through. It makes things much more tough to go through when your feeling alone. I hope all goes well & I too am glad I have this forum when I’m feeling down & alone. My thoughts & prayers :pray:

I am an elementary school teacher and work full time. Currently we are 100% distance learning. I had surgery 4 years ago and so far am 100 fold better than pre-surgery. I get a pressure headache now and then, but pre-surgery I was almost non functional due to 100% cerebral fluid blockage from my Chiari. I have been able to continue being a long distance runner and return to a full life. I feel super fortunate to have had an incredible Neuro team.

Before surgery what symptoms were you having, if you don’t mind sharing? I feel like I haven’t heard very many success surgery stories. Once again drs are making me feel crazy.

Last November (2019) I was diagnosed with Chiari. After years of headaches/ migraines, then I started to have trouble swallowing, my vision was double and I had no balance. Extreme fatigue. My Chiari was 3cm, yes cm not MM but was pressing on my brain stem and spine and cerebellum. I had surgery January 2020, I worked up until my surgery. I was sooo exhausted every day. I am a special education teacher and always running around. It was hard just walking around, I felt like I was drunk all day, and reading was a struggle every day. But after my surgery I was out for 6-8 weeks(Corona extended my leave from 6 to 8 weeks), then Corona hit and we taught online for the rest of the year. My surgery has saved my life. I regret not finding it sooner because some damage was done to my eye muscles and I still see double without my glasses, but not near as bad! With glasses before it couldn’t be corrected. I don’t have headaches and my balance is back. I actually have a gag reflex again and can actually do things like I’m normal. I actually even started working out again and have lost almost 40 lbs. But I am able to do things I couldn’t dream about doing last year. I would love to chat with you about surgery, recovery, and my symptoms, if you would want. I did get short term disability through my job while I was out. But not disability, but if your Chiari is effecting your daily life, I would definitely fight for it! I’m 32 years old and recovering beautifully!

3 Likes

I am a nurse. I have had to cut down on my hours in order to keep worsening symptoms at bay. Fatigue is an everyday reality. No matter how much sleep I get I always wake up exhausted. My memory is far worse and I struggle to multitask. I have the same ongoing double vision mentioned before with it worsening when I’ve over taxed myself. I just have to keep my world small, fewer activities, outings and chores. But now with online school and a developmentally challenged student at home everyday, there is no rest and no breaks. This will not be sustainable.

1 Like

Hi. I was decompressed back in 2006 but still suffer from severe fatigue and pain in my neck and shoulders. I have worked ever since as a home care nurse but have not been able to work full time in a while. I applied for disability in June of 2019 and was approved in December. I don’t know what conditions I was approved for but I doubt it was Chiari because I’ve never sought treatment for it once I was decompressed because the NS who performed my surgery was out of state and none of my doctors here even believed it was an issue because I was only minimally herniated. In fact, nobody even saw my herniation until I sent my MRI to my NS. I still work very part time because I cannot survive on disability alone.

1 Like

Most people who have had success don’t join groups like this so you don’t here about it as much but there are a lot.

1 Like

Surgery is a scary thought. My fear is something going terribly wrong & I have 3 kids. I work as a cna & its taking its toll out on my body. I’m curious if anyone suffers from severe muscle aches, as I do. My fatigue is ridiculous. I could sleep my entire day away. My neurologist is trying to get me adderall at the moment cuz my fatigue is so bad its putting a strain on my family. I definitely feel as though I’ve heard more horror stories about chiari than success stories.

1 Like

Hi. Like I said in another comment, there are more success stories than you here about because people who have had success don’t have the need to join support groups. The longer you wait for surgery, the more risk you have of developing permanent nerve damage. It took me a long time to get a diagnosis and feel that if I would have had surgery sooner, I would have been better off. I still consider my surgery a success as I no longer have vertigo, balance problems and headaches. I also have POTS, a common commorbity of Chiari, which I believe is causing my fatigue. I hope that whatever you decide, you will find some relief soon.

I totally agree with you. People who end up much better off after Chiari surgery get on with their lives and do not hang around Chiari chat sites. Stories here are skewed to the negative, which is okay if you are looking for solutions on how to deal with Chiari surgery and the aftermath, but not so good if you are pre-surgery and looking for some comfort and positivity. Thing to remember with Chiari surgery, is that it is a major surgery, but also one of the least complicated surgery a neurosurgeon does.

I also agree with you about delaying surgery, accumulating more symptoms, and having a poorer outcome. Look at the Chiari Severity Index! While any surgery is a risk, the risk I see with Chiari and waiting while symptoms pile up, is that you do not recover as much after surgery. And, we do not get to pick and chose what symptoms we lose or keep! I have never heard of someone improving to any significant degree with their Chiari symptoms regardless of what approach they take without surgery.

The first neurosurgeon i seen told me I have a 50/50 chance of waking up a paraplegic & that scared the absolute shit out of me. I have 3 kids!! That made me think if this is the worst I can deal cuz I’ve dealt with it this long. Its not easy but is surgery really worth it. I come on here to find comfort & learn what others go through because most drs make me feel crazy like my symptoms don’t exist.

Hey Erica,
I can assure you are not the only one who has gone through that “…most drs make me feel crazy like my symptoms don’t exist…” I too had that attitude for years. As a child I was involved in a MVA. I was telling them 'Hey, something just not right here…" but it was written off time and time again. First it was labelled as growing pains, then it was hypochondria, then they came out with ‘Ohh that can’t be happening… …he must be crazy’ It took a major incident (me driving down the road and everything went black. Couldn’t see) for the medicos to accept something wasn’t right and to investigate.

Because it had been left for all of those years (20+) by the time it was actually identified it had developed into an emergency situation. The CSF flow had been restricted so much the pressure was building up in my skull, causing hydrocephalus, the surgeon actually told me post surgery that when they drilled into my skull the fluid squirted out at them, which, seemingly, is rather unusual. Because it had been left so long the recovery took much longer, as my body not only had to deal with the recovery from the surgery but also to the massive changes in intercranial pressure.

The medicos must tell us the ‘worst case scenarios’. Mine were pretty blunt "You could die due to the surgery :astonished: But then if we don’t operate you WILL die prematurely :roll_eyes: " Hmmm, not much of a choice really.

I’m not going to tell you that recovery was a breeze because that would be a lie. That initial surgery was only the start of my journey and it’s been one hell of a rollercoaster journey with 5 further surgeries since. I have often wondered if I’d pushed the point of ‘Somethings not right’ and had the initial surgery sooner whether all of those subsequent operations would have been required. But then I go back to the original surgeon’s line "You could die due to the surgery :astonished: But then if we don’t operate you WILL die prematurely :roll_eyes: " Hmmm, not much of a choice really.

I must also agree with Gabby-Jazzypants “I have never heard of someone improving to any significant degree with their Chiari symptoms regardless of what approach they take without surgery.” Symptoms maybe manageable here and now, but over time they will most probably progress and there really is only one way to deal with it and that’s surgery.

Merl from the Modsupport Team

I have had 2 decompressions and a shunt for hydrocephalus. My spinal fluid shot over the docs shoulder when I got my shunt. I was going blind. I have been on SSDI since I was 31. (20 yrs) It isn’t a lot to live on but between fatigue, headaches, brain fog, memory, muscle aches, etc. I can’t work as a high school physics teacher and coach. I also have CRPS (Complex Regional Pain Syndrome) which I think I got because of the 10 yrs between my surgeries. I thought the first surgery fixed my Chiari but it didn’t. I have a lot of problems that don’t go away. Hope that helps.