Post-decompression Issues

[Jcn1432]

I had surgery in Sept 2020. I did see some relief for the majority from the pressure and the awful sound I heard in my head from the flow being blocked. However, since the surgery I am having numbness in my feet, hands, forearms, and now the left side of my face. I feel like the doc is trying but they have put me through a kazillion tests with nothing showing.

I had an mri 1 year ago and it seemed to be fine as far as the cerebellum being in a better place. But, this numbness and remaining pressure in my head is driving me crazy. I’ve heard everything from thoracic outlet syndrome to MS. I had a sleep study, nerve conduction tests and other tests. Everything comes back normal. I am waiting on a B12 test, but we will see.

I am just curious and hoping for someone else who might have these issues to share their thoughts.

• Is there some other type of MRI I should have? Is it pointless to push for further tests?
• Is it just damage from the chiari to begin with that I have to live with?
• Is it normal to have flare ups after surgery?
• Does stress cause flare ups even after surgery?

The neurologist has been extremely willing to help me but I can’t help but believe that he is looking every where but at the chiari history. I don’t believe there is such a thing as a chiair specialist. There aren’t enough chiarians to sustain specialists in this field, but I sure wish they had enough knowledge to help and/or would just admit they don’t know. Guess I’m venting. Thanks in advance for any help or thoughts.

[ModSupport]

Hey JC,
My name is Merl from the Modsupport Team here on Ben’s Friends, but I’m also a neuro patient. I’ve required a few neurosurgeries and I’m sorry to say I’ve been on a very similar roundabout to you with all sorts of diagnosis. I don’t have Chiari, I have a growth which is stopping the flow of CSF and have a shunt, a plastic tube, that drains the fluid from my skull. By no means do I have all of the answers, but I will try to give you the knowledge I have, from my experience.

MRI machines have a rating called a ‘Tesla’. In VERY basic terms it’s the strength of the magnets. The ‘standard’ MRI is rated at T1.5, with a T3 being twice the strength. Again, in basic terms T1.5 will show tissue, T2 will show fluid, T3 will show the flow of fluid. Considering I have fluid flow issues T3 is always the rating I’ve been recommended to use.

There is an injection often used to enhance images both CT and MRI, there is a bit of a debate in the medical field about its use with T3 images and it often depends on the neurologist ordering the scans to whether they use the contrast or not, but it helps to define structures on the scans. Some would say the T3 has enough definition to make contrast unwarranted.

“Is it pointless to push for further tests?” That can really depend on what sorts of tests you’ve already had and the time between such tests. For example blood tests can change quickly, where bone deterioration takes some time. Having repeated tests with little change can exposes us to high levels of radiation which can cause all sorts of other issues.

Is it just damage from the chiari to begin with that I have to live with? Possibly so, but you are obviously looking for answers and that’s a good thing. In which case, what I did was exhaust every avenue open to me. If a Dr suggested a treatment option, a therapy or an idea I ran through them all. Acupuncture, blood work, dental work, hydrotherapy, manipulative physio, massage, Bowen Therapy, TENS machine, Botox etc, etc, etc I tried diets, exercise regimes, hypnotism, more medications than I’d care to list and on and on and… I tried them all.
AND
I DOCUMENTED IT ALL. Initially, I didn’t keep my own records but differing dr’s would send me for the same repeated tests and when I’d report I’d already tried a specific treatment they’d ask for the report, which I didn’t have. So they’d send me for the same thing. I soon learnt DOCUMENT IT ALL. Then when dr ‘X’ says ‘Have you tried ‘Y’(Treatment)?’ 'Yes, and here’s the paperwork. Here’s the report".

" Is it normal to have flare ups after surgery?" Well, it was for me. My last major neurosurgery was back in 2013 and I still have flares today. For some people, they’re lucky enough not to have any symptoms post surgery. No flares, nothing. Me, I’m on a bit of a see saw of symptoms.

“Does stress cause flare ups even after surgery?” OHH MOST DEFINTELY . If I over do it today I can be paying for it for the next 2-3days and that’s not just physically over it it either. Both mental and emotional stress add to the mix too. But its not only stress that can impact. My body’s thermostat is all messed up, so daytime temps play a role. My eyes affect it all too, if it’s a bright day that affects me. On a cloudy, rainy day my whole head feels heavy I can predict a storm better than a barometer. If I skip a meal, forget medication, don’t sleep well etc, it ALL has an impact. Dr’s love the theory A+B=C, so symptom A plus symptom B = Diagnosis C. But that’s way to simple for me, I’ve found it’s more like A+B-CxD/E√ F… and every one of them is variable, so no 2 days are ever the same.

P.S. If you need to vent, then you do so. We all need to vent and get it out. If you don’t that stress builds and builds and can be very destructive. We know this because we live it too and who better to vent to than people who understand from their own personal experiences.

Merl from the Modsupport Team