Hi. I am wondering what most people do during periods of significant symptoms. I am three months post op (decompression and C1 laminectomy) and have just returned to work- 24 hours per week. I have a very stressful job, as I am a director and oversee about 40 employees. I also have two beautiful girls, ages 3 and 5, that are quite active. On most days, I am struggling with severe headaches, neck pain, tingling and pain in my arms and legs, nystagmus, floaters, and nausea and vomiting. I am in PT 3x/week and I am also in weekly therapy to help my emotional well-being. I have always been of the mind set to push through whatever I am experiencing. I was symptomatic for months before I saw a doctor and just pushed through the symptoms and continued to work. I am wondering now if that is a good idea given my condition. I tend to try and get everything done- work, dishes, laundry, shopping, etc., but am finding that I really pay for it for days afterward, although I still do not tend to slow down. I am curious if people stop their lives to care for their symptoms or continue with daily life- mind over matter. I am learning to be kinder to myself, but also feel like I could do nothing in life if I stop when I do not feel well. I think not feeling well is my new baseline. Curious what others do. Thanks!
Like you I used to ‘push through’. Initially that worked (well, I thought it did), I saw my pcp and he basically told me keep pushing, so I did. Things didn’t improve, in fact were getting progressively worse. Then I had a follow up with the neurosurgeon, he told me to have a scan and he’d see me in a month. The day after the scan I got a call from the neuro’s office wanting an urgent appointment with me. There was a MAJOR issue and the surgeon had a real go at me for leaving it so long. The problem I had was that to see the surgeon I needed a referral from my PCP who told me to keep pushing and things would settle. So it was a ‘catch-22’ situation. So, a week later and I’m in having further neurosurgery. But this did not resolve the issue and yet another operation was performed within the same week. This all occurred in 2013. I attempted to return to work firstly at reduced hours in the same role, that didn’t work, so tried again in another role, again failed and I have not been able to return to work since (and now have been told I probably never will). The frustration with this personally has been HUGE. With this frustration has come all of the ‘what if’s?’. What if I hadn’t just ‘pushed through’? What if I’d seen the dr’s earlier? What if I’d taken more time to recover? what if…? what if…? and what if…? Grrrrrr
Frustration Central !!!
It was said to me there is no such thing as ‘Minor neurosurgery’, any neurosurgery is a major operation. If you had knee surgery would you go running marathons? Of course not. But we seem to think we can continue on as before (Well, I did). My wife says I’m a typical male ie Caveman mentality “I man, I strong uggg” I now know I can’t and may have done myself more harm than good.
Now, I’m no dr, but from my experience I’d be getting checked out sooner rather than later. Look, the results may come back as ‘This is as good as it gets. Deal with it’ but if, like me, it comes back that you should have acted sooner rather than later (and you are anything like me) you’ll be berating yourself for ever and a day that you hadn’t done something about it sooner.
So that’s my opinion.
Merl from the Moderator Support Team
Thank you so much for the response. May I ask what caused you to need further surgery? I have no idea of any complications or problems that can happen. Everytime I call the neurosurgeon’s office, they tell me to go to the ER or call my PCP because it has nothing to do with what they did. Like there is no possible way I could still be having trouble from the chiari. So infuriating. I still have a syrinx in my back also. Im having a terrible headache that never goes away- same as before surgery- but Im still keeping on business as usual. I saw my neurologist this week who ordered an urgent CT that showed spots on my brain. I have an MRI of my neck and brain on Friday. I have no idea what is going on with me and its so nerve racking. I do know I feel terrible- headache, nausea, pain in arms and legs, awful neck pain with frequent spasms and exhaustion. Thanks for the support and sharing your story!
“May I ask what caused you to need further surgery?”
Real basic answer: Fluid build up. The aquaduct (fluid drain) within the spinal cord was blocked and the CFS(Cerebral Spinal Fluid) was building up within the skull/brain.
Naturally we produce about 600ml of CSF per day. There needs to be a fine balance within the skull between brain matter, CSF and blood. If one thing is out of balance I get symptoms, BAD symptoms. I had one medico ask me to give it a pain rating out of 10, with one being minimal and 10 being the worst pain ever. I said ‘15’. Then she says to me ‘Ohh, it can’t be THAT bad…’ I told her to lay on the floor and I’d boot her in the side of the head. She was offended by my comment, but not as offended as I was by hers.
That attitude of ‘Ohh don’t blame us. It must be you’ is all too common and one I have first hand experience with. My experience with what could now be perceived as medical negligence started 40 plus years ago. Now it could be argued that back then they didn’t have the technology to better examine (ie CT/MRI scanners), ‘so don’t blame us’, but there were many, many instances which occurred over those 40+ years when they did have the technology and did have the knowledge. But rather than examine they took the easiest path and followed a previous (false) diagnosis. It wasn’t until I had a major incident that a more complete investigation was undertaken. Then the dr came out with a line ‘…ohh look what we found…’ I was ENRAGED, I’d been telling this @#&* for decades something was wrong and all I get is a '..ohh look what we found...' There isn't enough hieroglyphs (&*%) on my keyboard to express my language lol
You know your body better than any of these medicos, if you believe there is something wrong, get another opinion, an independent opinion, and still if you feel you have not been listened to, get even another opinion. With neuro’s getting a truly independent opinion can be difficult. Often they will refer to the previous surgeon’s opinion and although there is privacy laws, they all belong to the same fraternity and they do talk.
Now, in total I’ve had 6 neurosurgeries. Each has been to ‘fix’ an issue, but if this is fixed then I’m another word beginning with ‘F’ (more hieroglyphs). My last surgeries were in 2013 and still today I have some hellish symptoms. Because it’s believed, by some, that they truly have fixed, I’ve been given every diagnosis from addiction to pain meds to psychosomatics to neuralgia to a vision issue and so many others I’ve given up ever getting a true answer. I now just manage the best way I can.
Merl from the Moderator Support Team
Sounds like it is time to re-evaluate priorities before you burn out, ifyou are not already there. Unfortunately, brain fatigue is not conducive to pushing through. Hopefully, you can figure out how to allot the energy that you have before facing negative consequences. Lower expectations, delegate, do things differently, and ask people for regular assistance. Super Mom is a cruel myth - especial if dealing with Chiari side-effects. Only you will know what to apply to your life. It is not easy, but it helps to think about priorities and energy levels when planning the day and the week. Good luck in sorting things out.
I would also say you need to be aware of the point of diminishing returns. You can push through so far but then if you keep pushing you actually start being able to do less and less. Then there’s the danger that not only are you able to do less but you start feeling worse the more you do.
My best advice is to listen to your body.
My recommendation is: don’t push it so hard! I know you have a lot on your plate but if you keep pushing, there’s a chance you won’t be able to do any of it. (Here’s praying that never happens). I own a construction company and used to do hard manual labor all day, 5 days a week. After my decompression I tried to go back to full time. After 2 months my symptoms were coming back. I realized stress and more than 2 hours of hard labor a day was too much. After cutting back to 2 hours labor per day and reducing stress by delegating more, the symptoms have reduced back down to very manageable. I’m praying for wisdom for you. Take care of yourself so you can be there for your family for decades to come. You’re doing a great job. Hugs!
Thank you all so much for the advice and feedback. It has been a blessing to find this community. I had an MRI last week because of all of my symptoms. My decompression looks good and my syrinx is gone!! All great news. But right at the surgery area in my left cerebellum is an area of encephalomalacia (tissue softening). Anyone have any experience with this? My neurologist was not sure of the impact of this, but said that it was not causing my symptoms (it is in the balance area of the cerebellum). She said it could have been caused by the surgery itself or even a small stroke pre or post surgery. She is going to consult with the neurosurgeon and get back to me. So more waiting.
I am trying to take it easy, but I am really bad at it. I appreciate the advice, especially the idea of getting to the point of diminishing returns. I definitely don’t want that to happen. My kids keep me busy, and there is nothing I can do about that, but I am going to do a better job of pacing myself, and I am going to cut back on my hours as well. Thanks everyone!
“…I am trying to take it easy, but I am really bad at it…” LOL LOL LOL. ME TOO!!!
But as Azurelle states “…listen to your body…” the signs may be subtle. My signs start out subtle, but if I ignore them my body tells me “Laydown or I’ll put you down” and it puts me down HARD. I may make this ‘listening’ bit sound easy… …it is NOT easy at all. I often get a sign and think ‘Ohh I’ll be OK’ and I push a bit more. Ahhh, don’t do that, it only makes things worse.
Learn your body’s signs, it will tell you. Ignore them at your own expense.
Merl from the Moderator Support Team
So you have found stress makes the symptoms worse? My husband is recently diagnosed… After other doctors saying he had “stress headaches” it feels like to say the stress makes it worse would imply it’s all in his head. Having migraines myself, I don’t want to imply that his suffering is his fault. Sometimes people will ask what triggers a migraine and I feel like there are too many triggers to pinpoint it and then it’s like I’m blaming myself and trying to figure out what I did to cause this episode … I stopped trying to figure it out years ago.
But back to my question. … Do you know why stress would make it worse?
Thanks for sharing.
Sorry for the late response! Life has been pretty busy here. I would be careful not to blame or say it’s all in your head if there is a lot of stress. You do what you can to minimize stress but let it go if you have no control of the situation. Stress can cause the body to be living in a flight or fight mode vs resting. There’s always a balance between the two but eliminating some things can really help. For example: If I start worrying about money or how I’m going to pay the bills, I notice that my symptoms get worse. I just pray and ask God to help me not to worry, then let it go if it’s out of my control. I don’t know if you’re spiritual or not but any kind of meditation seems to lower stress. I hope this helps! have a Merry Christmas!
That makes sense. And the neurosurgeon we met with said his symptoms could be from not getting good sleep. He has sleep apnea and didn’t tolerate the CPAP mask. So now he is trying an oral appliance. Still waiting for a breakthrough. Prayer is my lifeline! But God has a bigger agenda than our physical comfort, so meanwhile we wait.
Thanks for the encouragement and advice!