4 month post op

Hello group,

The healing was going well until I couldn’t sit upright for more than 15-20 min before this horrible pain in my chest and left arm. Strange tingling in my arms and fingers. My NS did another MRI and showed a syrinx from C2-T8 and a mild CSF leak from the surgery. I’m on bed rest and a new med Lyrica to see if it will go down on its own to avoid another surgery. However, if it doesn’t get any better I’m not opposed to surgery for relief. Since the surgery my headaches have improved greatly. The MRI also showed that my brain is not longer pressing on the front of my head. I’m happy about that.

I’m keeping my spirits up and reminding myself this was a MAJOR surgery and it going to take up to a year for recovery. Peace and blessing to all.

Hey Jay,
“The healing was going well until I couldn’t sit upright…” I’ve required a few neurosurgeries and with each I’ve had what I call ‘a honeymoon period’ where initially things seem to be travelling OK (Maybe it was the drugs), not great, but OK and then BOOM and I’m having MASSIVE headaches. To be honest, I didn’t think pain like that existed, just unbelievable. I was tempted to rip my eyeballs from my skull, the pressure behind my eyes was off the scale.

One of my surgeries was a craniotomy and the day after surgery I had a friend turn up to visit. She’s a real comedian, joking and making a general fool of everything. I cracked up laughing and I heard this noise, like drinking milk through a straw “What on earth was that?” (Well, it was a bit more colourful language than that :astonished:, but you get the idea :grin:) The nurse told me to rest and speak to the surgeon, which I did. He explained that to do the surgery the ‘seal’ which holds all of the fluid in had been broken, but that over time it would seal up on it’s own. What was needed was rest, rest and more rest and sure enough, eventually it did seal up without further surgical intervention.

If your symptoms are minimal AND manageable, see how things go. I STRONGLY agree, this is MAJOR surgery and it can take quite some time to fully recover. Some things may comeback better, some symptoms may linger and it really can be a case of weighing up the pro’s and con’s for further surgery. Now is a time to be patient with self. Slowly, slowly is best in recovery. I say this because I didn’t do the slowly, slowly, doing myself more harm the good.

Merl from the Modsupport Team

Update : It was a mess to say the least. I had to have surgery again in Oct. it was scar tissue blocking the CSF Flow. It was building up in my skin which caused it to expand and a syrinx formed from the C2-T7. Also, that caused low CSF fluid on the brain. So My brain was in the sunken place. It left like my brain on resting on my eyes. My vision started getting blurry. A mess is all I could say. I couldn’t do anything talking became a issue. I had to have a walker for a few weeks but I’m back up not running but up. I don’t need the walker anymore. Since they removed the scar tissue I’m back on the road to recovery.

Hey Jay,
Welcome back, but I’m sorry to hear you had to again ride that rollercoaster of surgery again.
I too have had those CSF issues. Initially it was too high, then it was too low and ohh YUCK, the symptoms from either, high or low, are just awful. They ended up placing a shunt in my brain to be able to regulate the pressures, but the shunt hasn’t been without it’s own issues too ie Blockages and breaks.

Let’s just hope that this recovery is a bit smoother for you from here on in.

Merl from the Modsupport Team

I’m about 7 months post op and it’s going a lot better. I can actually do things like travel hack even just going outside for nothing is a trip for me. I happy I can go do stuff without being is horrible pain and needing to lay down. I keep my meds on me just in case of a sudden headache but I’m happy I know how to combat it and know what it is. I’m happy I’m moving on with my life

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Hey Jayjay,

That’s brilliant, congratulations.
Recovery takes time. How much time? That is very individual. My first surgery was a HUGE battle to overcome, but I did get there. The 2nd surgery was horrific and the recovery took much, much longer. I got really angry about it all. I wasn’t angry with the medicos, I was angry with self. The doctors all said it was fixed, only it wasn’t and I tried to push myself to get back to normal and I pushed too hard, too soon doing myself a greater injury, requiring even more surgery. It was nasty.

Over time I have learnt which pains are a sign to ‘Act now’ and which are ‘Normal’. I have also learnt how to better manage my symptoms. Look, don’t get me wrong here, I haven’t ‘perfected’ my symptom management, but I can manage better.

We ALL want to be happy and moving on with life. It’s just learning how best we can do that for ourselves.

Merl from the Modsupport Team

This gives me so much hope. I’m about 7 weeks post-op from my own surgery and have been experiencing balance issues for about a week. Nothing debilitating (no full spinning, etc.), but enough to bring me down and limit me. I’m an avid traveler, so the idea of not being able to go where I want, when I want has been crippling for my mental health.

My NS told me to expect a relatively full recovery by 6 weeks, so the fact that your journey has taken longer makes me feel like I’m not alone in my prolonged timeline <3.

Hey Kate,
That ‘6-8week’ timeline is a ‘normal’ timeline given by the medicos and as a best case scenario it can occur. But the reality is it can often take much longer, especially when it comes to the brain. For some people they can bounce back really well, for others it can take a bit longer, but then for some there can be ongoing issues. Personally I’ve required 6 neurosurgeries and none of the recoveries have been the same, despite the medicos opinions. It seems the pain and symptoms I am experiencing, I’m not actually experiencing at all, in their view anyway.

When it comes to neurosurgical recovery I am yet to hear of anybody taking exactly the same route. Progress can be slow and sometimes even seem to go backwards some days, but patience is a must. Your recovery takes as long as it takes and is very individual to you.

Merl from the Modsupport Team