Chiari Online Support Group

Newcomer with some questions

Hello All

I am new to the group so will introduce myself quickly: I had symptoms for many years but thought it was normal. Then started getting burning sensation in my feet which turned to peripheral neuropathy. Tinnitus followed and then lost the ability to run due to reflex and balance issues. Eventually MRI revealed 25mm CM and due to progression of symptoms was advised to have surgery. So that was done in October last year and after about three months was feeling top of the world with many symptoms getting better, could sort of run again, regained some sensation in feet, balance was improving to the point where I was exercising again etc. THEN suddenly turned around and symptoms are getting worse again. Went for check up MRI and surgeon says it was a complete success with brain in a more natural position and only slight pressure still present at the back. So that’s my intro … and I have lots of questions and hopefully some answers for others.

Thank you

Hi Ray

My experience and reading indicate that a successful surgery does not mean that the brain is fully healed and back to regular function. An MRI that shows the brain is where it is supposed to be is a good thing as it means that you have a good basis for further therapy treatments. What it also means is that neurosurgeons and neurologists often do not know what to do with you as symptoms move beyond their knowledge base.

You do not indicate what your symptoms are. For myself, my symptoms that returned, remained, or developed seem to be brain processing, cognitive, and brain regulating problems. It seems that my brain did not heal up on its own once the physical stressor of a squished brain and spinal cord was removed.

i have found and used many different therapy approaches to address a variety of different symptoms. I have lots of assessments and exercises that work, they often just take time and effort to implement and to see results.

So… what are your main symptoms right now. I know that balance is one.

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Thanks Gabby, it seems, like so many others, that the list is endless. My main issues are neuropathy that scares the daylight’s out of me with its movement around my body. Its always in my lower legs and feet are completely numb. Then lately moved to my fingers again (was there before surgery). Now the latest is numbness of the thighs and groin sometimes which makes walking difficult as the large thigh muscles no longer work as they should. Strange gait (sought of stagger walk), difficulty with balance especially when just standing up, apnoea but this is worsened by testosterone replacement injections, so catch 22 because the hormone replacement takes away the aches and pains but seems to make me anxious. Also memory loss, vision blurring, body temperature control issues, tinnitus, breathing irregularities (including shortness of breath). And other things that arise and disappear on a daily/weekly basis. My main concern right now is balance, walking and apnoea. Thanks for your interest and feedback re balance.

Dear Ray,

At one time, I was a serious runner. And, I recall some of my first permanent symptoms of Chiaris was much like yours; I would get SO dizzy when trying to go for a run. When the dizziness didn’t get better, I tried making it go away by pushing my run even harder. Didn’t work. From the time that the dizziness started until nearly full paralysis was six years. From 2008 - 2012, I was a total ‘zombie’ with “Fibromyalgia and Chronic Fatigue” as my only diagnosis.

When a Chronic Fatigue specialist in Charlotte diagnosed me with Chiaris, I went through the whole decompression surgery and all - but because more than a decade had passed without proper diagnosis and treatment, I have permanent brain stem damage.

I still love to go out and exercise. I mean, I was a competitive runner for almost 40 years! (Marathons, 10K and 5K) But instead, I’ve gotten into race walking and powerwalking. I do not want to risk re-injury with the jarring of jogging. I’ve heard some people say it’s OK for them to jog and run - and I think for some, it will be fine post-surgery. But, I do have permanent damage because I have re-occurring paralysis that has never gone away since the decompression surgery in 2012. That includes the dizziness. I’ve learned my dizzies come from a drastic drop in blood pressure. My blood pressure always runs really low. Fortunately, caffeine and salt boost it back up - which I’ll consume prior to my morning workout. [I compete in the 1,500 meter race walk in the Senior Olympic circuits. I’ve actually gotten rather good! (Buy the grace of God only!) My PR is 10:07.0 It’s been fun.]

That sounds familiar Beth. Also took a long time to diagnose me and was often make to feel like a bit of a hypochondriac. But in defence it is quite a tricky diagnosis.

If your doctor is referring to your surgery as a success, it is probably in reference to no complications. Sometimes, a person will only know the results years later. My Decompression was 2013, my cervical syrinx greatly shrunk, but I have still have other syrinxes in my spine. Some have grown. My headaches have greatly reduced.
Was my surgery a success? In some ways yes, in some ways no. I would encourage you to do low impact walking/exercise and have an acute awareness of what you eat. Keeping my weight off with the Chiari and Syringo is not easy but possible. I would not encourage running, no matter how good the tennis shoes are. The impact is way too strong.
So, sometimes you won’t know until years later to see if the surgery was a success (if syrinxes greatly shrink, disappear, headaches lessen, numbness goes away etc) The surgery is not an exact science like an organ transplant because there are so many dynamics with Chiari, the amount of blocked CSF is different, herniation size, age of patient when diagnosed. I was diagnosed at 40, so a lot of damage has already been done. It is encouraging to see doctors finding it early in children.

That is great advice thank you! Yes I also had a looooong diagnosis period in which fatigue, tinnitus, neuropathy etc was misdiagnosed for years until it became debilitating. I guess it is something that we need to keep reminding health practitioners about in order to raise awareness and hopefully next generations diagnosed earlier. I do not understand why patients with neurological issues surrounding central nervous systems are not immediately sent for MRI. Maybe its a cost issue, but the cost of waiting is far higher in terms of monetary, as well as physical disability is far greater I think.

Dear Ray,

I agree. MRI’s have definitely revolutionized the ability to diagnose CNS issues, among others. It sure helps if the medical staff knows what they are looking for, too! My first MRI was back in 2002 - after Chiari symptoms increased exponentially. (The back-of-the-skull headaches…etc.) I could not believe it when the ‘official’ medical report on the MRI said everything was NORMAL… but a radiology tech had scribbled “???Chiari’s???” in pen on the envelop of the MRI films (Back when MRIs and X-Rays were processed on film). No one saw the scribble. The “?Chiari??” never made it into any of the official report. Not until I pulled those very films out 10-years later to take to a Chiari neurosurgeon. Grrrr! :face_with_symbols_over_mouth::rage:

That very same Chair neurosurgeon also gave me a realistic view of decompression surgery results. He said, “Everyone heals differently. Some recover 100%. Some don’t recover at all. And, there’s every possibility in between.” So true! Six years post-surgery, I say I recovered 70%. Every 4th day (and every 12th week) I still get re-occurring Chiari symptoms. Somethin’ like 'phantom pains???" Whatever it is! All my Chiari agonies return - just like prior to the surgery! The symptoms last for 24 hours - and then I am back to normal for 3 more days till the next relapse. Not even my neurosurgeon knows why the re-occurrance of the symptoms are so very regular. :confused:

Hi Beth what a shame they didn’t diagnose earlier… I find it difficult to gauge if / how much I have recovered because the brain is so damned adaptable and no sooner do you get better/worse than you brain adapts to it and it become the new normal. I often try to remember how bad I was before to try imagine the extent of recovery so I guess so far mine is 20% and if I can reach 70% or more I will be quite happy.

I have noticed that if I become aware of an issue, for example new numbness in-between my fingers etc, I then go into a period of self-analysis (almost like a system check) and that can spin me into some anxiety as I realise things aren’t working as they should be. It kind of derails the process a bit as if the symptoms manifest and then become problematic where they weren’t really a problem before.

So I am learning to ignore certain symptoms to avoid this type of behaviour. I wonder if your relapses have become anticipated and therefore real?