Chiari Online Support Group

I don't know what to do anymore


#1

For weeks I have been waiting for a response from the Mayo Clinic, and today I got one. They said due to high capacity that they could not accept me at this time. They do not think that there is any additional tests they could run to help me. There is people who need to be seen more. And I get that. So many people have it much worse. I just don’t know how to feel. They said I could send them my more critical information for that to be looked over, but I’m running out of hope. The Mayo Clinic was my last hope. I’ve been to the top two and three hospitals in the nation and I always get the same answers, " We know there is something wrong and it is not just Chiari, but we have not found it yet. Chiari would not cause these symptoms"…Do I take that as an answer? Do I fight back? Where do I go now? Why can’t anyone figure out what is wrong with me? Have you guys ever lost hope? How’d you regain it? Where did you find it? Please help.


#2

I say to give yourself a moment (a day, a week, a month) to really mourn your previous responses to your outreaches for care. You deserve to have your health concerns heard and listened to, and you deserve help finding an answer.

Next, I will say that it doesn’t always take “the best” to get the best help. I know that there are many people that are helped by the famous clinics and have life changing outcomes. But I also know many people who happen upon amazing practictioners all over. My own road to a healthier life began with a FNP that recognized my case was not neurotypical.

There are neurologists out there that recognize multiple conditions (even rare ones) and will treat them concurrently. Mine dignosed my Trigeminal Neuralgia in the rirst 10 minutes but said that it didnt accout for all the symptoms so we needed to did deeper. It wasn’t until several tests later that we got to Chiari but we did get there.

I live in a suburb of a medium sized city. Both the FNP and Neuro are here in town. I did have to go into the city for the neurosurgeon to do that eval and make that decision.

Please don’t pin all of your hopes to the big and famous. There are great (and crummy won’t listen), but great Drs, and NPs, and Neuros all over.


#3

Thank you for replying to this post. I am definitely taking a break from my search right now, as my spirits have been completely crushed. I’ve been at this for almost two years and I really need time to relax and to take a step back.

I know you don’t always have to go to the “best” to get the best results. I was diagnosed by an orthopedic surgeon. I was just hoping that maybe somewhere as widely known as the Mayo Clinic would be able to help. Whenever I am ready to get back into my research I will be trying to go more local. I’ve gone hours and states to try to find the best care, but maybe I am just overlooking what’s right in front of me.

I’ve never had an issue with faith and hope, so this is extremely hard on me. Thank you for replying.


#4

Hi,
My Chiari symptoms became so severe I did not have time to pick and choose a surgeon.
I had to go with the first that I could get an appointment with.
I’m 2 months post op. I had a 10 mm herniation but ppl say the size is irrelevant.
I’m curious to know what symptoms you experience that they are telling you are not caused by Chiari.
There is a long list of symptoms for Chiari and I’ve experienced them all and more since my surgery so if be interested to see if you are experiencing something not on the list or if there is negligence or if you are just not disabled enough ( in their eyes ) to require treatment.
There are so many things that Chiari is similar too and so it’s important to find out correctly what is wrong. Chiari surgery is major and it wouldn’t be nice to go thru it and then discover you actually have something completely different.
I was sure I had myasthenia gravis before they found the Chiari on my scan.
I was relieved to find Chiari as myasthenia Gravis is a devastating disease and not treatable.
Hang in there …
And if u can list your symptoms it would help us to help you.
Also … are you seeing a neurosurgeon or a neurologist.
Neurologists don’t seem to know Zip about Chiari and always fob it off as fibromyalgia.
Hoping for you X


#5

Ps. When they say send your critical information they are asking you to list the most severe symptoms

Mine for example were
Horrendous neck pain
Loss of use of both arms… couldn’t lift left arm at all and could only lift a cup of tea (max) with the right
Inability to turn my head left right up or down
Weakness to the diagphram muscles causing shallow and painful breathing
Tachiacardia due to pain
Loss of circulation in the legs
Sharp pain in my feet and hands/wrists
Electronic Ringing in my ears /head

My list goes on but those would be the ones considered “critical”. I was unable to look after myself.

When i was seen in clinic I had a positive Hoffman sign and over reactive reflexes in the knees and differing plantar reflexes in my feet
But it was clear that I needed help

Have you had your reflexes checked?

I hope that you are not as bad as me and that you will get help soon
If it’s any consolation I am no better following my surgery but at least they give me medication to keep me reasonably comfortable and its still early days but I think we can’t necessarily pin all our hopes on surgery which is traumatizing and can make things worse X


#6

Hi!!

Thanks for your reply. I have seen 3 surgeons and 4 neurologist. I also have had my reflexes checked and they are extremely over reactive in my knees, just like yours. Symptom wise I would say my more critical ones would have to be severe headaches, ringing in the ears, loss of sensation in my legs, tachycardia, ataxia, and memory loss. For the past couple of months I have had an issues with hearing cracking in my back of my head and neck which is very terrifying. Everyday when I wake up is different. Sometimes I can’t feel my legs at all therefore I am unable to walk. Others times I can feel them and have no issues. Sometimes my legs tremor. It truly just depends on the day. When I went in to my first appointment with the doctor who did my surgery he told me he believed that he needed to do my surgery within two weeks or that I may have become paralyzed from the waist down. I was only symptom free for about two weeks before everything started to come back.

Your story seems very similar to mine symptom wise, so if you ever would like to talk more detail you are more than welcome to message me.

-xo