Chiari Online Support Group

3-weeks post op and struggling

Hi all.
I am 3 weeks post op and struggling with not being able to do anything. Im a get up and go person and still struggling with the pain numb arm and burning sensation in my legs and servere headaches but guessing this is part of it. I’m missing the gym loads and was wondering what are people able to do now with going to the gym and what sort of exercise you have found work well for you in your recovery. I have chiari malformation and a syrinx the entrie length and width of my spine like alot of you on here. I’m guessing most of you was as shocked as I was when being diagnosed with Chiari but so happy that they actually found out what was wrong with me.
How are you coping in life now as I’m a hairdresser and can’t even stand for 30 minutes at the moment I am worried how I’m going to be when I go back to work.

Congratulations on three weeks post-op! It is definitely not an easy recovery. What I might suggest is to take it easy and give yourself the time to heal and recover - short walks not gym workouts, lots of rest, ask for lots of help with your previous responsibilities. If you are worried about finances, are there ways to cut way back on expenses to give you the time that you need rather than rushing back to work? You know your situation the best to come up with solutions. It is not fun to go into debt with an illness/recovery.

How did your neurosurgeon outline the recovery period (they do not always have a clue on reality!). It seems that your expectations of recovery are more tinged with what you want and not what your body and brain actual need. It can be hard to realize that will-power alone cannot make a person better. Chiari folk know that already - having surgery does not change that!

For me, I was advised to have at least three weeks of in-house care (I have a house and family) and that I would not be up to par for at least three months. I did find that it was detrimental to my recovery if I did too much in a day as it took much time to recover from the fatigue.

Take it easy, be kind to yourself, lower expectations, and ask for lots of help.

Good luck in your recovery!

Thanks so much for replying. I am definitely taking it alot slower and trying to not rush this process. My NS didn’t really say to much about not doing anything or what I should be doing but said to be mobile thats all. I just can’t wait to feel slightly normal and get back on with life. Thank you so much for helping me and giving me advice.

I hope you have a great recovery. A lot of people do. Like you, I led a very active life. I was at the gym 2-3 times a week. I worked a full time job that I loved. After becoming symptomatic about 9 years ago, I found I had Chiari in 2014. I had surgery. In my case, I already had irreversible nerve damage. I’m 63 now, I still have balance issues, constant headache, back pain, eye pain, and stomach issues. Being older when I was diagnosed, has made it very difficult for me. Try to take it easy on yourself and listen to your body. It’s ok not to be Wonder Woman. At one point in our lives we are Super Mom if we have children, husband, job and hopefully a personal live. I’m happy to be Grandmother, Mom, and me. Prayers for a smooth and fast recovery!:hugs:

I can just encourage you to take it easy and rest as much as you can. We are all different. In my case I had in-house nursing care for 3 weeks. I went back to work 5 months later but school decided they would put me on light duties for 6 months till the end of that year. This was wonderful for my recovery.

You would have to take care of bending your neck forward or down so much when you work. I would suggest you make sure to have an adjustable client chair, paired with an adjustable bar-stool / hairdresser’s chair for yourself, so as to try and work as level as possible with your head. The forward bend could cause you to often feel nauseas, sore in the neck/head. Keep off your feet as long standing would impact on your spine and neck.

All the best with your recovery.

How Renton finding being back to an ok state have you been able to go to the gym. I have been like you but having the symptoms since I was little but they keep saying there was nothing wrong so thankfully I know now which is better thank not knowing. I am taking you advice on and trying to be a lot kinder and take my time and not stress and relax alot more. Thank you Hope your well.

Thanks so much for taking the time to reply to me. I will take on all your advice and hope that I make a good recovery I’m normally a very optimistic person so hoping that comes back very soon. How did you cope when you was through this yourself.
Kind regards.

I am 8 mos post op as of June 24. Before surgery I was a marathon runner - marathon maniac, avid cross fitter and in great shape. Recovery was slow and difficult. I can sympathize with the having to be down and still. Take it slow and easy and allow time for your body to heal and recover. If you can, take little walks around your house every day. I found moving a tiny bit every day helped. I got the all clear at my 6 mos follow up to resume all activity. I had a syrinx, not as long as yours - and it has all but resolved. My NS was really clear with instructions about not straining at all for the first 4 weeks - no lifting beyond a cup of coffee, no bending over to pick something off the floor, etc. I was terrified of disrupting the surgery site and duroplasty patch so I was super careful. I started a walk/run routine 3 months after surgery and kept it at an easy 1 minute walk 1 minute run as I built back stamina and time on my feet. My Neuro was adamant to keep the running to one minute only until we knew it would be ok for my body and brain. I gradually increased the running time and am now running 10 minutes and walking 1 when I am doing a run more than 8 miles. June will be my first full month back to running and by the end of this month I will have a 100 running miles in. I also have started back to Cross Fit.

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Wow you have done amazing I hope that I’m able to be like you and get fit again, how long did it take for. You to do crossfit and weights again? I didn’t realise how bad it was going to be. I can’t sleep which is killing me even though I am exhausted and tried my body is hurting to much my spine is so painful and headaches are really bad and the burning and numbness I didn’t expect to happen I tried going to my doctors and she told me I was to much of complex case and that I need to speak to my surgeon which I left messages and haven’t herd back I have my 7 week check up on the 19th so guess I’ll just right everything down and speak to him then. I am trying to walk as I read that we need to be walking atleast 2 hours by the end of 2 months, which is when I’m ment to to go back to work which I honestly don’t think I’m going to be able to stand up for 7 hours doing hairdressing as looking down hurts and I’m really short which doesn’t help. I don’t no what to do as I thought that I would be able to do the things I loved I wanted to go and be a midwife and not sure that now is going to be the case.
Taking each day as if comes and hoping it will help.

Take each day as they come. Crossfit has been going on for about a month now. I have modified a few things and started out with just body weight and am slowly adding kettle bells back in. I started back this week with Yoga. I really thought this day would never show up in the beginning. It felt like it took forever to heal on top of being terrified if I did anything I would ruin my recovery. I really needed to hear at my 6 mos post op appointment that all was well. That got me over the fear and gave me confidence in running and getting back to crossfit. I really was very careful those first months. I walked a lot and just tried to keep moving. I hope the days start getting better for you. It really took me a solid 8 weeks for the stiffness in my neck from surgery to resolve.