Chiari Online Support Group

Hello! 3 weeks post op and questions


#1

Hello everyone! I just joined the group. I am three weeks post op! I found out I had Chiari in August after dealing with a numb right arm for about months. Turned out I had a Chiari malformation and a syrinx from my C5-T7; everyone was shocked I had no other symptoms!
So I had surgery to prevent more damage and now I am miserable! I had a good first week but I have gone downhill since. I get awful pressure in my head when I stand up or sit up for an extended time. I have passed out and almost passed out several times when getting up. My head throbs. And my hearing stops working! It’s all been so unnerving especially since I never had headaches before. Does this sound normal with anyone else’s experience? I traveled out of state for my surgery and my surgeon has been very hard to reach and unhelpful. I had a CT scan and MRI a week ago that looked clear. Thank you!


#2

Surgeons and their staff vary in how much information they give about recovery. Keep in mind that it is a major surgery, Chiari folk do not do well with anesthetic, and the surgery involved your brain. Recovery is often slated for 3 months. I am sure that you were given guidelines. You will have symptoms from the effects of surgery prior to that time and potentially beyond. Google what are some symptoms following a major surgery and you will see that you are not far out. Your surgeon no doubt informed you of complications when you should contact emergency medicine. Follow that. They are not going to be terribly interested in holding your hand with every other concern. Poor service and sad but often the case.

Otherwise, rest lots, do not put pressure on yourself to accomplish “X”, and do not let others. Others need to surround you and help. Hopefully, you have set that in place. Slowly increase activities within your tolerance level as it will only set you back if you try to push through recovery with false expectations of where you think you should be. Keep on top of medications and get off as much as you can as soon as you can. Discussion with a pharmacist can often be more productive. However, activity modification and regulation is more important at keeping you on a steady recovery period.

Good luck with your recovery and stay safe and rested


#3

Hey Clairence,
For a starter, everything Gabby says is 100% correct. I’m really only going to reinforce what she has said (with a bit of my own experiences). My situation is not chiari but certainly neuro related.

Prior to surgery I had minimal headaches ie a niggle in the temple etc. Then they operated… …OH HELL. I have NEVER had pain like it, they wanted me to rate my pain, 1 being minimal 10 being the worst pain ever. I gave them a rating of 15. A nurse said 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 not impressed, but then nor was I with her comment. The pressure behind my eyes was beyond belief, often I’m tempted to dig my eyes out with a teaspoon. And, by the sounds of it, a bit like you, the dr’s were about as helpful as a handful of rocks. Their opinion was “we operated, we fixed” but if this is fixed then I’m another word starting with “F”.

You say that you are 3 weeks post op and believe me (and Gabby) those are early days. I’ve had a few neurosurgeries now and no 2 have been the same, neither in recovery nor symptoms. My last op was in 2013 and still today I battle chronic symptoms. I cannot get through a day without having some sort of symptoms. Now in saying that they certainly are nowhere near as bad as the initial post surgery pain, but still damn nasty all the same. Pain management has now become part of life.

Again as Gabby mentions, You’ve had MAJOR brain surgery. This is unlike any other operation/medical procedure. I’m often saying “When you break your leg, it affects your leg and 8weeks later, it’s all healed. When it’s your brain it affects EVERYTHING and then 8weeks later it still affects EVERYTHING”.

DO NOT GIVE YOURSELF A TIME LIMIT FOR RECOVERY. I did and I was in a depressive state when I could not meet my own expectations. How long does it take to fully recover? that’s a bit of a ‘how long is a piece of string?’ sort of question. It takes as long as it takes. At first I tried to compare my situation with others, don’t do that either. No two brains are exactly the same, so trying to compare is impossible. No two neurosurgeries are the same either, as I say I’ve had a few and none of my recoveries have been exactly the same.

Now, I also want to say here is that your concerns are normal. Initially, every twinge, every ache, every sensation and I was “Ohh is that a problem? Is that another issue…” but as time has gone by I have learnt which aches/pains are ‘normal’ (if you can call any of them ‘normal’) and which ones need attention. You too will learn, but this takes time.

And finally…
…BE KIND TO YOURSELF. Your body will give you signs. LISTEN TO THEM. Rest when you need (and you will need). Others may have opinions but they are not you. They have not been through this and to be honest have no idea of this reality.
WE DO. WE KNOW because we have been there too.

Merl from the Moderator Support Team


#4

Thank you! This is helpful! I learned yesterday my blood pressure is dropping when I get up and my dr here is going to help me try to get it under control. I am trying to remember that this will be a long recovery! I have 4 little children and it is so hard to not be able to even visit with them because they give me a headache :disappointed_relieved:


#5

Hi, Clairence,
Chiari occludes the blood and cranial fluid flow to the brain and the decompression surgery we had helps restore that, but letting the area properly adjust to the new surgical modifications to the area is crucial; bending over, getting up from seated or laying position, coughing, sneezing, getting angry, even laughing real hard can cause head pain and pressure.
Swelling in the area will be common until your body can fully repair itself due to the Chiari and even years later if the area becomes aggravated.
Other members and myself have gotten results with a simple basic means of care and that is periodic cold/cool packs this gives phenomenal results.
Chiari can compromise the brain stem and this will add to the symptoms we have that involve our vitals such as heart rate, blood pressure, and also things such as consciousness, balance, vision, and even environmental perception. Do not let these create a panic and what will help is having an Internal Medicine Doctor as your primary-care physician; they are far more thorough and willing to dig deeper into your situation if required.
Focus on getting to know what agitates your system and focus period is important because you are your own best advocate. Have faith and nurture your body’s health don’t just expect it to heal as if nothing was ever wrong.