Chiari Online Support Group

Please read-Chiari or something else?

Hi all!
I haven’t been on here for a long time, but I really need help, thoughts, advice. You hear so often in the Chiari world to listen to your body-mine keeps telling me don’t do surgery this isn’t Chiari, yet it’s the only thing doctors tell me is going on and I’ve been tested for so many things. I’m only at 4.3mm w/ restricted CSF flow. I should be so thankful I have a neurosurgeon that listens and acknowledges it’s not the size of herniation and is willing to do the surgery, so why does my body keep telling me that’s not it-is that just fear? Intuition?
I had my first bone only decompression w/c1 laminectomy 2 1/2 years ago with no resolve. In fact I was worse off after surgery as far as constant drunk/dizzy (hard to explain weird feeling) and still had all symptoms. Before surgery I could confidently drive hours from home and after surgery I have to have someone to drive me anywhere. I cannot grocery shop or go places freely like before surgery. I don’t know what happened or why, I just feel too weak and out of it. Maybe it’s the natural progression of things, idk. My flare ups seem to be progressing quite a bit. On a regular day, I still have symptoms-sometimes quite pronounced sometimes not as severe and I have learned to roll with my symptoms and adapt to my environment. When my symptoms flare though, they are getting worse, I feel like it could lead to something bad and it could be a permanent lights out for me.
My symptoms are-
1-Very dizzy/drunk feeling all the time, varying degrees
2-Full body internal vibrations like a low voltage electrical current, at times it feels so strong like I’m about to start outwardly shaking
3-Body weakness with leg buckling during flare ups
4-During flare ups when I am weak it’s like my diaphragm doesn’t want to work, it is very slow and I have to think about breathing to get a slow inhale, like a fish out of water if that makes sense. I felt that immediately after surgery in the hospital, like when you are given way too much narcotics which is what I thought it was at first.
I’ll also get this tight chest and feeling oxygen not exchanging properly after things like laughing too much and then I feel very out of it too the point that ppl will ask me, are you ok, where are you right now because I get so spaced out.
5-Glitchy brain, like short circuiting, rapid fire blackouts and light headed
6-I’ve started choking over the last several months. During my last flare up my husband pointed out I chocked every night that week on dinner
7-During flares, my voice becomes weak and raspy
8-Sometimes pressure in head with painful eyes, blurry vision
9-When weak my body feels very numb/tingly and everything feels so full and tight all over body
10-Painful weak legs
11-Right side of mouth goes numb
I don’t know what is happening to me. I don’t feel confident that my doctors know what is happening to me. Does this sound like only Chiari to you? It’s the only answer I have and my neurosurgeon suggests a duraplasty. He believes I will have success at symptom resolve but no guarantees and to put it off as long as possible and try to manage symptoms. I haven’t seen him for a couple of years now. My medical team says there is nothing else they can do for me and it’s time to go back to neurosurgery and I know surgery will be suggested. Why do I keep having doubts and telling myself it has to be something else? My husband keeps telling me if the first surgery made you worse, what makes you think a second surgery won’t end up badly. His negative spin I know is making me guarded, but he is right. Should I keep looking for more answers, does this sound like a mild Chiari can cause such severe symptoms?

My neurosurgeon is not on Chiari Specialist list, yet I am in one of the best hospitals in the country. He is so knowledgeable in Chiari and comorbids and he listens to me and wants to help me when I am ready. He treats Chiari patients from all over the country and some from other countries so I am very lucky to have him on my team. So why am I having such a hard time having faith that this is the right and only diagnosis? Also, I am terrfied I will not wake up from surgery or I will stroke out or something else. I am scared I will be worse off again and if my symptoms are from Chiari, I am not even letting myself have a chance at getting better because I am too scared to proceed. I have been fortunate to pull out of my flares so far, but one of these days I feel like I won’t be so lucky and I don’t know where to go from here. Why do I keep telling myself this is not the issue? Is that just normal?
Sorry for the very long post, I just needed to write my concerns and fears-and if I get any good vibes back, then wonderful! :heart:

Have not heard from you in a while post surgery. Disappointing to hear that you are not doing well and facing another decompression surgery with many doubts and fears.

I can only talk about my experiences and knowledge that I have, but it does seem like two things ARE going on with you - just that both of them seem related to Chiari. Of course, following through with ruling out other conditions is quite normal with Chiari.

I have broken symptoms into two camps.

Camp One: Symptoms directly caused by compression on tissues in the foramen magnum. For you, this would include muscle weakness, breathing, choking, voice modulation. I can also include incontinence, central apnea, and nystagmus. I am missing some and plain do not know about others. Also, fatigue and fuzzy brain.

Camp Two: Brain not functioning well because of faulty input (blood flow and neural input) and because of maladaptations to all that faulty input. This can include visual problems, hearing processing, balance, dizziness, and strange pain. Also fatigue and fuzzy brain.

You have symptoms in Camp One, a measurable herniation, and a neurosurgeon potentially willing to perform surgery. You may wish to have a look at the"Chiari Severity Index" discussions here to assess appropriate wait times for surgery given symptoms already exist.

For Camp Two symptoms I did lots of therapies to get my brain working better and processing better. Primitive reflexes for dizziness, vision therapy to help with shopping and driving, and a bunch of therapies for strange pain.

These are things that I did AFTER surgery. You are in the position where seeing a neurosurgeon is a fine option given the emerging difficulties of Chiari and new symptoms. You are in a better position where you and your husband can be good advocates for yourself with the care that you will need after surgery or even give some a try before as your energy allows.

You are about to embark on another leg of the Chiari journey. Be patient, be strong, and beat fear down with a big stick!

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Thank you for the response gabby_jazzypants! I appreciate it so much.:heart:

Good to know! Soooo… what is your next step?

Maybe what you have going on might be a combination of something? Have you asked for another MRI? Have you received an MRI of your spine? Someone had suggested to me getting an MRI of my spine as well. Where is the list of Chiari Neurosurgeons that you wrote about?

gabby_jazzypants, well I’m going to beat fear down with a stick I suppose. :wink: I have updated MRI scheduled for brain as well as a CINE. Neuro asked me if I would mind getting autonomic testing done as well, so that is scheduled for October. I will likely end up seeing neurosurgeon soon.
I do have one other issue that I don’t think is Chiari related, but I do want to ensure vascular system is not contributing. I bruise super bad, not anemic, but I wonder because aside from dizzy all the time, the light headed comes with exertion and movement as well as a blotchy rash on left arm and legs when I am physically active and it’s not a sweat rash. Before I delve into that, I don’t suppose you know if Chiari can cause that? It causes so many random strange things in the body. My doc assures me heart is great, so I assume that means vascular as well.

Hi DesireeLars. I do have an updated MRI and CINE scheduled. I have not had a full spine yet.

Hey, Missyjo, Yeah, it sounds like your brain stem is getting a royal squish! The brain stem is what is in charge of everything automatic - things you don’t have to think about. Like the diaphram. When I was about 6 months away from death’s door, that was one of the symptoms that appeared. I went 10 years misdiagnosed (Chronic Fatigue Syndrome and Fibromyalgia were my only diagnosis for 10 years)
I did have the decompression surgery in 2012, and I recovered 70% from all my Chiari symptoms - which was way better than having to suffer with the symptoms 100% of the time. I hope the 2nd MRI will show whether your brain stem is still being compressed - if there still isn’t some ‘brain ooze" from the cerebellum. The cerebellum controls muscle coordination - so that’s why you stagger around like a drunk. My neurosurgeon (who did nothing but Chiari decompressions) said that the older you get, and the longer you wait after onset of symptoms, the less likely of full recovery. But, everyone is different. And, according to that standard, I should not have recovered hardly at all! I was well over 50 yrs old when I had surgery. If you are younger, you could still have a fightin’ chance.

Dear Missyjo,
I am so empathy reading your information, I used to be very active to contribute to this site and then after my operation things got better and better and now I am enjoying full kind of Quality Of Life (obviously is not the same before some one diagnosed and had decompression surgery) - what I can say on your brief there, YES…that is sound like Chiari to me as I had all of that plus ‘‘loosing memory’’, stumbled and Felt’’ unable to mobile as easy as, the worse things was, each time I sneezed and coughed, I momentarily fainted due to the horrendous pain that I could not bear. Majority of Health Care Professionals have a little knowledge on that, though is debilitating condition its just not enough to make them realized what kind of challenging of our Quality Life is. What I would if I were you:
Master yourself on this condition by reading this condition through Mayo Clinic, (View Mr Flint - Neurosurgeon at Birmingham hospital - once you understand that, write a letter to your GP explaining how important it is to be refer to your neurologist, print out some information from this side attached it to your letter. You need to be proactive to chase and try to make discussion in a pitiful manner - don’t forget GP with this current situation GPs are snowed down with the back log. And let me know if you like to know more come back to me, I think I know very well more than my GP so that I normally have discussion if they need anything - only have decompression after you have scan and make sure always have second opinion, don’t go to the first surgeon they refer you to

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Hi Missyjo. I had a very small herniation. So small it wasn’t even found for 2 and 1/2 years and that’s only because I had researched my symptoms and believed that’s what I had. I finally came across a NS online who diagnosed minimal herniations. I sent him my MRI and he called me a week later and said he almost didn’t see it but I did have it and needed to be seen. I went out of state to see him and he ordered a CINE MRI. My CSF flow was blocked. I scheduled surgery for 3 weeks later. That was back in 2006. I improved after surgery but am still quite debilitated from POTS, a common comorbidity of Chiari due to damage to the autonomic nervous system. Prior to surgery I had all of the symptoms you have and many more. I was practically bedbound. Could sit in a chair but not for long. I would do the surgery again in a heartbeat. I can manage my symptoms as long as I take it easy. My symptoms are chronic fatigue, pain, and orthostatic intolerance. I cannot be on my feet for more than a few minutes without getting faint. I manage to stand longer if I need to but not without feeling really uncomfortable. I’ve never actually fainted. I have to use the motorized scooters at stores. I can’t shop at stores that don’t have them unless they’re small and I’m going to be in and out. Thank goodness for online shopping! I have learned to adapt and when I get down about it, I just think back to how I was before surgery. If your CSF flow is blocked then that is not good. I know you’re hesitant. It’s completely understandable. I hope that I have helped in any way by sharing my story.