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Follow up MRI (3mo.)
Hi again. I haven't been as active here as I was hoping immediately post op but I have my 3 mo. MRI follow up in a couple of days. Prior to surgery my major symptom was numbness and involuntary finger movements (probably caused by the compressed nerves near the syrinx) in my right hand. While not fully recovered, I am learning to use my hand with the limited sensation that it does have. I have been going to OT recently and the hand is testing slightly better every 2 weeks although the fine motor skills are still lacking. Hopefully the syrinx will be almost if not fully resolved and it will just be a matter of time to see how much my hand recovers. This forum was great leading up to my surgery and I thank everyone who has sent me a message again. I just thought I'd put an update for those who have similar hand symptoms to possibly find this place as I had after the initial diagnosis. Here is hoping everyone is doing well in their quest against their Chiari.
Hello Q1279, I am glad you are recovering fine. Yes it is slow and can get real frustrating. Also like you said is listen to your body. I am 11 months post op and the nerves are still repairing from my syrnix. Mine was from C2-T1.
girlinxile,
I know it all sounds scary. They found mine and within a month and a half. I was having surgery. The scaries part is that I didn't know I had it. When my surgery was done everything that could go wrong did. I could not even sit up by myself. I could move my arms and legs, but had no control. I couldn't walk either. This was July of 2012, this is June 2013 I have been back to work since Jan. and driving since then. I was walking by November 2012. I couldn't have my life put on hold either but it did. You can do one of two things let this whip your *** or you can show it you are the boss and whip it's ***. Life can and will throw you lemons make lemonade from it, then drink it.
girlinxile,
I know it all sounds scary. They found mine and within a month and a half. I was having surgery. The scaries part is that I didn't know I had it. When my surgery was done everything that could go wrong did. I could not even sit up by myself. I could move my arms and legs, but had no control. I couldn't walk either. This was July of 2012, this is June 2013 I have been back to work since Jan. and driving since then. I was walking by November 2012. I couldn't have my life put on hold either but it did. You can do one of two things let this whip your *** or you can show it you are the boss and whip it's ***. Life can and will throw you lemons make lemonade from it, then drink it.
COMMUNITY LEADER
Hi and thanks for the update !! I hope u use the journal in ur profile page to track ur progress....it is a great way to see ur progress urself and for others going thru it as they can click ur name and read ur progress.
Also a side note, it can take up to 2 yrs for the nerves to heal...so the fact u r seeing improvement so early is great...and around 3 months many have some symptoms return which is part of the healing process....
Just know it takes time and patience....but u will continue to see changes as time goes on.
Sending healing MoJo for a continued smooth recovery.
This may be a b it more info than you were after but...First, I forget if I've read it on these forums or elsewhere, just note that this is my experience...results may vary.
I suppose I can call myself lucky that I caught the Chiari when only my right hand was affected so I didn't have a lot of the other common symptoms like headaches, pain when coughing, etc. The first few weeks were rough. I was on Norco afterwards and I would start to get pain that I had to lie down for around the time of my next dose. By week 3 or so I was definitely more mobile though and I felt like I could power through any pain/discomfort with the medicine on a regular basis but it would definitely get worse with more activity. I am a fairly active person so this was difficult to adjust to but I khnew I had to work my way back up to a "normal day" slowly...and the times I thought I could power through my body reminded me that I just had neurosurgery.
Around that time I started weening myself off of the Norco and going down to Advil for minor flareups. I did this for a few reasons: 1) I wanted to only use the powerful stuff if I needed it. 2) I wanted to start driving again, although my neck was still recovering so I had to work on ability to turn my head quickly for safety concerns. & 3) The side effects of Norco. I'd say it was around the 5 week mark that I was on Norco just at bedtime to help me get through the night/more preventative and around then I was cleared to drive again by my NS's nurses.
As I said, I am a fairly active person. My job is about 50/50 physical activity and desk job. Luckily we have not had any projects so I was able to get back to work about 6 wks post op doing just the desk portion. Also for safety reasons, my hand more than anything prevents certain aspects of my job. Weeks 6-8 I was probably on regular Advil but I tried to only take on an as needed basis to not risk any ulcer-like complications. I was just about fully off the Norco but I keep some at my side always just in case. But haven't needed it in quite sometime now. I'm able to get through my full day of work and things at home with no difficulty now sans the hand issues but those are slowly getting better.
As for outside of work, I am actually a competitive air hockey player. Picture competitive table tennis but with air hockey for an idea of the level of activity this involves. That level of excursion around week 6 was difficult and often caused a pretty bad headache. Just took this as a warning that I was doing too much too soon. Now though, I've worked back up to my usual 2hrs of continuous play while practicing without any noticeable limitations in my head.
So the short answer is I think at this point I am just about back to normal in terms of ability to do things ignoring my hand. The nerve issues associated with that will take a long time to recover if they do fully. I felt similar about doubting the surgery beforehand but right before surgery the numbness was spreading slightly on my right side down to my foot. This was my biggest reassurance that I was doing the right thing. Also, given all the options it was best to address it before other things got worse. My biggest advice is to be patient with it. Recovery is low and can often be frustrating. Gotta focus on any good that comes out of it no matter what.
I suppose I can call myself lucky that I caught the Chiari when only my right hand was affected so I didn't have a lot of the other common symptoms like headaches, pain when coughing, etc. The first few weeks were rough. I was on Norco afterwards and I would start to get pain that I had to lie down for around the time of my next dose. By week 3 or so I was definitely more mobile though and I felt like I could power through any pain/discomfort with the medicine on a regular basis but it would definitely get worse with more activity. I am a fairly active person so this was difficult to adjust to but I khnew I had to work my way back up to a "normal day" slowly...and the times I thought I could power through my body reminded me that I just had neurosurgery.
Around that time I started weening myself off of the Norco and going down to Advil for minor flareups. I did this for a few reasons: 1) I wanted to only use the powerful stuff if I needed it. 2) I wanted to start driving again, although my neck was still recovering so I had to work on ability to turn my head quickly for safety concerns. & 3) The side effects of Norco. I'd say it was around the 5 week mark that I was on Norco just at bedtime to help me get through the night/more preventative and around then I was cleared to drive again by my NS's nurses.
As I said, I am a fairly active person. My job is about 50/50 physical activity and desk job. Luckily we have not had any projects so I was able to get back to work about 6 wks post op doing just the desk portion. Also for safety reasons, my hand more than anything prevents certain aspects of my job. Weeks 6-8 I was probably on regular Advil but I tried to only take on an as needed basis to not risk any ulcer-like complications. I was just about fully off the Norco but I keep some at my side always just in case. But haven't needed it in quite sometime now. I'm able to get through my full day of work and things at home with no difficulty now sans the hand issues but those are slowly getting better.
As for outside of work, I am actually a competitive air hockey player. Picture competitive table tennis but with air hockey for an idea of the level of activity this involves. That level of excursion around week 6 was difficult and often caused a pretty bad headache. Just took this as a warning that I was doing too much too soon. Now though, I've worked back up to my usual 2hrs of continuous play while practicing without any noticeable limitations in my head.
So the short answer is I think at this point I am just about back to normal in terms of ability to do things ignoring my hand. The nerve issues associated with that will take a long time to recover if they do fully. I felt similar about doubting the surgery beforehand but right before surgery the numbness was spreading slightly on my right side down to my foot. This was my biggest reassurance that I was doing the right thing. Also, given all the options it was best to address it before other things got worse. My biggest advice is to be patient with it. Recovery is low and can often be frustrating. Gotta focus on any good that comes out of it no matter what.
How are you feeling 3 months after? Like is your day to day activity where it was before diagnosed or do you spend a lot of time at home? I am scared going in just because I don't know how long my life will be on hold after. I know everyone is different... but from the surgery itself are you suffering or getting on with life?
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