Chiari Online Support Group

New, struggling and really need someone to talk to

I almost ended up writing a really long thing, but I'll keep it sort.

In April I was diagnosed with a chiari malformation, 4mm. It's small but I have been having most of my life and only recently found out where it was coming from. The problem is, because most people dont understand and doctors (two of my family members are physicians) don't consider it a "real problem" I'm having a hard time finding support and help. Ive tried getting disability but have been rejected consistently for 4 years now.

I even feel bad for posting because I don't want to turn into a pity party, as I've been scolded for before. I've been having a hard time getting and maintaining work, and I don't think it's safe for me to drive. I don't really have words to explain how awful I feel when I get behind the wheel, but I no longer live in a metro/city area with good public transportation. I'm being told that I have to get over my "fear" of driving or they are going to let me fend for myself on the streets.

I don't know what to do, how to explain my symptoms so they take me seriously. I am afraid, and not too stable mentally.

I can understand about work issues.i am normally a 40 hr a week chef zooming about doing a hundred things at once, then 2 &1/2 months ago that all suddenly stopped.i can’t b in a kitchen if I’m suffering dizziness and feel unsteady so I’m off work.its hard, people look at u and see normal.your not alone, but that doesn’t really help.chin up .

It does help, maybe not a lot, but I - do - feel really alone sometimes. My symptoms have been getting a lot worse over the past few months also, and I'm super sensitive to light. Bright sunlight gives me headaches that feel like migraines, and I start seeing spots, getting nauseous, my legs spasm . . . I feel powerless and resentful because of this. My dad is a surgeon and my aunt is a pediatrician. They minimize my symptoms and think I'm just using the condition to be manipulative.

They have already said to my face that they think I'm lazy, a liar, and user and have threatened to kick me out (my father actually did, on the day I was diagnosed). Because I was able to finish college and even had a nice job at a book store, they think I can't keep work because I - don't - want to work. It's really killing me, and I need to vent. The holiday season has been a total nightmare and I don't want to loose my family over this.

It's terrible that your family deminishes your real physical problems to a bad character. I can't imagine how you must feel and I can't imagine how you could get through to them. Check out this chanel they have a lot of info. Maybe ask your father to watch some of those videos. I can't suggest any specific one right now. How much does he acctually know about Chiari? In case you didn't know, a 4mm can have much worse symptoms than a 12mm.

Do not feel bad about sharing here! Some amazing people have created this site exactly for chiarians like you and me to have a safe place to talk and get support! :)

1 Like

Thank you Fugu! That is really helpful. I'll go through the videos and see which ones are the most useful for explaining it to others. Im not sure exactly how much he knows about it and I think he doesn't really want to admit that I might actually need help instead of believing that Im nothing but a deadbeat. I actually didn't know that a 4mm could be worse than a 12mm, I am still learning too.

Thank you very much for the link!

This is Chiari and Syringomyelia handbook.

And here is info for patients and physicians.

1 Like

@Fugu are wonderful all the information you posted are great. I know it will help me and my family. And @Semanticore I completely understand you I have to have someone pick me up or drive me to work everyday because I’m so scared of wrecking blacking out or not being able to feel the steering wheel or having a headache hit and have an accident I know how you feel I have the same symptoms and it’s so hard to explain it to my family my kids keep saying I wish you didn’t have that dumb accident Mommy I was rear-ended and I ended up with this so I completely understand how you feel like you’re alone in this but you’re not the support group has helped me understand a lot more what is wrong with me and how to work with it I still have my ups and downs trust me today when I get off work I’m going to the ER because of this headache but I have to work because I have to provide food for my kids disability has denied me also I still feel alone but I know the support group I can talk to you best of luck for you okay

I was an EMT in an ambulance that was hit by a train. I had an 8mm herniation of my cerebellum and had large decompression surgery 20 years ago. I was in 6 vehicle accidents starting about 10 years after my chiari surgery. I still had all of the symptoms and then some and they were exacerbated by each accident. My neck became more and more unstable over the years and I had C3 to C7 fused 7/2017 and my back had deteriorated to severe spinal cord compression at many levels. Also developed scoliosis which was pretty severe over the last 20 years after the first accident being hit by a train, I underwent 7 hrs of back surgery 12/2017 , having 8 vertebrae fused laminectomies, osteotomy, and fusions from my sacrum to Thorasic 11. The surgeon had to make a 15 inch incision. I am now 3 months post op and have not felt this good since being in the train accident. I have lost the numbness in my hands, no more neuropathy in my feet. I was always tripping over my own two feet. I don’t drop things all the time now either. My sleeping is much better, I sleep for longer periods of time and feel better after waking up. I don’t have the pain in my neck or back that was the pre-surgery pain and is now gone. The only pain now is from the muscle having to regain their strength and heal from the surgery. I will be going to physical therapy for 2 to 3 months which I start in 3 weeks. I just can’t begin to express the major difference that I feel since the surgeries. For the first time since the two surgeries I walked a 1 1/2 miles yesterday with no pain. I did have to wear my back brace for support but I did not have any pain after walking which thrills me. I also don’t feel much pain in my legs or other places which I always would feel for weeks after exercising before the surgeries. I guess, I am sharing all of this as in my case their were other things that deteriorated in the years since my decompression surgery. I had a 4" X 4 " piece of skull removed from the occipitut and ended up with 5 more brain surgeries due to the mess up in doing my decompression surgery and subsequent plate a year. I was quite sick and in so much pain for close to 15 years. So, I guess the moral to my story is that throughout the years since my decompression surgery other issues developed in my neck and back which slowly caused more and more problems and symptoms, Had I not found an incredible surgeon who did such amazing surgeries on me with little to to no problems afterwards, I would still be dealing with my life becoming more and more debilitating due to the years since the chiari surgery and the breakdown of my entire spinal column. I think the decompressions can bring on some of this as it creates a weak spot from the Occiput down through the entire spine.
I hope something I shared is helpful to someone as I know how much it has changed my life for a new start. I am 65 now also. I was injured when I was 43.

As far as getting disability goes, I was told by a disability lawyer that the answer to getting approved for SSDI was heavily reliant on how the doctor fills out the application and the content of the letter he writes. These factors I was told are the major reasons in whether you qualify for SSDI or not. The lawyer told me what the dr. should say and things such as that. So , I would highly recommend consulting a lawyer that is well versed in how to help anyone get SSDI. Unfortunately, that was 22 years ago and I have no recollection as to what the specifics were needed in the letter to 'SSDI. But I am sure a lawyer that deals in getting SSDI would be well worth the expense. They actually only get paid by a percentage of how much you are awarded in back payment of SSDI if you are approved. If you are not approved the lawyer gets nothing. So it is very much worth the small expense when you are approved. Hope this helps. Chiari is not an easy story or life to live and I can offer you the strong will and montra that I have which is to “pull myself up by my bootstraps” and to not let anything get the better of me. Those strong willed part of my personality has helped me to get to this point and will keep on doing so. Take care alll and God bless. Barbara.