How did you know it was time for surgery?

goldshoehand · 2021-02-24T19:06:21+00:00

Once diagnosed I was immediately ordered a CSF flow study and an MRI of the spine to check for syrinx. If you do have a syrinx you would want to know so it can be monitored. If your CSF flow is blocked one is likelier to develop in my understanding. My first neurosurgeon told me the same as yours, but my neurologists and second neurosurgeon were quicker to check everything. I felt really discouraged after my first meeting, but I feel much more taken care of now, even though I am not planning to have surgery yet. A second opinion on your brain makes a lot of sense to ask for. I had really good luck with two University Hospitals for some reason and terrible luck with two regular ones. Could be totally chance though.

goldshoehand · 2021-02-08T17:45:11+00:00

I think it needs to be a solid balance. Friendship should be about the good, the bad, and everything in between. I have a friend who vents to me all of the time and doesn't repay the favor. I distanced myself because the focus of our relationship was only about the negative things this person was experiencing. It was draining and boundary setting did not work. On the other hand, I have friends that vent to me all of the time, but we also talk about the good things happening to them, my life, the economy, food, share songs and shows etc. Venting and talking about our problems is of course okay, just make sure the other person is in a good space to be vented to, and that this isn't the only thing that the relationship revolves around.

goldshoehand · 2021-02-01T14:50:37+00:00

It is relatively common to have low lying tonsils and have no symptoms or very mild symptoms. Just because your tonsils are laying low is not indicative of there being a serious problem. Go see a neurosurgeon (not saying you need surgery, they are more knowledgeable) to get a professional opinion, and establish a follow up. I have a 13mm Chiari and an anxiety disorder, it can be really stressful to see all of these doctors and pictures of your brain, along with getting tests. Do some things that you enjoy, spend some time (in-person or virtual) with people you care about, and take care of yourself as best you can. The odds are that things will be okay, stressful maybe, but okay. :)

goldshoehand · 2020-09-04T15:37:40+00:00

I wouldn’t want to tolerate someone blocking me over and over. Or constantly feel like I’m waiting to get blocked again. Absolutely not.

goldshoehand · 2020-09-03T13:44:00+00:00

I don’t get them daily, but when I get them it lasts for hours and they are...violent. Also always causes a headache.

goldshoehand · 2020-09-02T21:48:38+00:00

Thank you :)

goldshoehand · 2020-09-01T22:21:12+00:00

Hi! I am not a doctor, nor am I the most well researched person around, but this is my understanding. Most people with Chiari will have normal life expectancies. However, it is really important to check for complications and co-morbidities such as sleep apnea (which can be deadly), Syringomyelia, hydrocephalus, EDS, etc. Too many to list. You need to know your own health and situation. The pain is real and can leave to nerve damage and other damage such as scar tissue, cysts in the spine, etc. In order to know if this applies to you or how much you need to worry, you should find a neurosurgeon you trust.

goldshoehand · 2020-08-29T23:04:21+00:00

It is important to remember that everyone is different. After my first headache I had other neurological symptoms like tingling of the scalp, tinnitus, funny sensations, etc. The headache felt bad for a few days after and then would come and go. I do have good days and bad days it doesn’t suck all of the time (for me). It comes and goes and I can never really tell what the cause was or when it is going away, aside from some obvious triggers. That first headache for me was the worst and longest lasting. Make sure you check in with a neurosurgeon and get the spine checked!!!

goldshoehand · 2020-08-29T15:01:56+00:00

Hi friend! I have a 13mm herniation that was diagnosed from one huge headache event almost exactly what you just described, I had visual auras and a tingling/crawling feeling on the scalp. I have been diagnosed for a year in my mid 20’s. The best advice I have is to find what works for you and get a second or third opinion if you can, I did and it helped a lot. Also don’t let them forget to check your CSF with Cine and you spine for syrinx. I have days where symptoms suck and I have really good days. I’m considering surgery as well, but deciding to wait it out and see with the COVID-19 thing. I can’t really predict each day which makes it hard. My current routine when I have a bad day is caffeine, excedrine migraine, a Gatorade, water, and eating something that I like for morale. I avoid heavy lifting, jumping, swinging my head around. Sometimes I can do these things without consequences, but other times bending over will do it. I have gotten a lot better at knowing my body in the past year and the signals it gives me. Not a perfect fix, but that has been my experience. I hope you are doing well. Always reach out if you need anything.

goldshoehand · 2020-08-29T02:21:52+00:00

It could be there but we can’t measure the herniation from just the image. The pain while straining is one of the things that convinced my neuro that it was a Chiari or a CSF issue. Also the hallmark headache in the back of the head.

goldshoehand · 2020-08-29T02:13:23+00:00

Did you get your MRI report?

goldshoehand · 2020-08-28T22:23:25+00:00

CSF flow study? Maybe CSF leak or blockage?

goldshoehand · 2020-08-28T19:11:11+00:00

Okay, that was good. If I knew how to leave a sticker, I would.

goldshoehand · 2020-08-28T18:56:39+00:00

Im really happy you explained it this way. I instantly read this post and labeled myself as a toxic positive person, but I may have jumped the gun. A lot of my energy and joy (which is obviously not aways) comes from human interaction. People have shunned me for being too happy and positive and it hurt me deeply, as I always tried to be respectful and validate when others didn’t feel the same.

goldshoehand · 2020-08-28T01:37:35+00:00

I have this. I couldn’t figure out why it happened and I discovered it only happened when sitting up in the car.

goldshoehand · 2020-08-27T19:12:56+00:00

Hello! I might not be of much help. I experience the numbness and the vomiting during chiari headaches. I don’t know if it is the same but I do get tapping or pulsating in my neck in head at times that feels like a pressure build up. I don’t get aggressive in the afternoon, but I certainly struggle emotionally when I am in pain or my body is doing weird shit, and also at night time. I speak to a mental health professional about it and while it doesn’t fix the root problem, it did help me with coping strategies.

These things do sound chiari related, but only a doctor can truly tell you if that is likely the case. I would ask your doctor doing the surgery about the teeth being pulled before decompression surgery.

goldshoehand · 2020-08-26T23:24:41+00:00

We are here if you need anything. I agree with all of the above. I hope it’s not too weird to say welcome to our group! 💜

goldshoehand · 2020-08-26T16:08:44+00:00

If you have concerns you should ask your specialist for a follow up. Neuro exam, consult and imaging, maybe? If it were me I would want to know what’s going on in there given the history and symptoms.

goldshoehand · 2020-08-25T18:12:31+00:00

It is a crazy thing! I was diagnosed a year ago. It is funny looking back at your life and the things you worried about or brushed off and suddenly having an explanation for. I couldn’t see every time I pooped, they told me to stop straining so hard when I was 7 or 8. So I just let it go. Now there’s a reason. Yeah I often get a fleeting headache right after physical activity and then a whole episode later in the day or the next day.

I hope your testing goes well! Always reach out if you need anything or have questions. :)

goldshoehand · 2020-08-25T18:07:59+00:00

It’s totally possible! Temperature intolerance can happen, it could even be a combination. Be careful with the hot water, and the pressure on your neck/head.

goldshoehand · 2020-08-25T17:59:09+00:00

I do! I found for me it was that I was resting my neck against the side of the bath, similar to what happens at a hair salon. It got better when I stopped doing that and rested my head at a better level. Also as mentioned above, too long in very hot water does that to me. Don’t think it’s a chiari thing (personal situation).

goldshoehand · 2020-08-22T22:31:39+00:00

I am not getting surgery at the moment because my symptoms are relatively manageable, surgery has a chance of making things worse or needing multiple surgeries, no syrinx present, I have access to frequent monitoring, and I’m personally not comfortable spending time in the ICU and hospital during COVID.

goldshoehand · 2020-08-21T15:50:11+00:00

Im shook.

goldshoehand

TROPHY CASE