So I emailed my neurosurgeon today about some issues that I have going on. Some symptoms are old (before surgery) and some are new. I wasn't sure what to do, but I know for sure it is not normal.So here is what is going on, my legs are still hurting and are weak (a little worse now than before surgery). My arms are now weaker than they were before and have some pain as well. My right arm will get what a feels like a jolt of electricity run through it into my shoulder and back. My middle and lower back ache frequently and get what feels like knots in it. I am also loosing bladder control when I stand up from a sitting position and I don't even feel the need to use a bathroom (a significant amount). This is getting worse and not better, I am not sure what is going on. I was decompressed on November 28, 2011, the headaches are gone, but now this!? So the neurosurgeon called me and told me that he would like a new, updated MRI of the brain and c-spine. I am worried that he will tell me that there is nothing he can do and he doesn't think it is related : ( As you all know that happens to us a lot! Anyone have this going on and any ideas of what might be wrong with me??? Thanks!
I’m sorry you’re still suffering from so many symptoms:( I haven’t had surgery yet, so I can’t speak from experience. I have heard that it can take several months to a year to notice improvements. Today, is your 3 month anniversary, so it is still pretty early in your recovery. I have back pain and bladder control issues too. From my understanding, that is caused by my syrinx. Did you ever have a full spine MRI to check for a syrinx? A syrinx usually shrinks over time after decompression, but sometimes a shunt is needed. I hope nothing else is wrong and this is just a hiccup in your recovery. I know this is easier said than done…but, try not to worry. Stressing and worrying will just make you feel even worse. I hope you feel better soon!
Crystal, Thank you for your responese, I have not had a full spine MRI, he has only done the c-spine and didn't find a syrinx. If he doesn't find anything this time around, I am going to ask for one (just to be sure). I sure hope that is not what it is because that would probably mean another surgery because it is getting worse and not better. I was hoping that someone else had these issues with out a syrinx. How many people have a syrinx located below the c-spine? Is that common?
I have not had surgery yet alone find a doctor who will do surgery on me but I have a syrnix. Some of the symptoms you are described is what I was told was caused by my syrnix. My syrnix is at c6-c7 through t2-t3 and growing. I hope all goes well and like you have stated I would insist on a full spine MRI.
Thanks Michael, I really don't want to admit that's what it could be. So I am still hoping that someone else will pop up and say yeah I have that too but with no syrinx. Too much to ask? Haha! Probably!
I am still having issues since surgery (Dec 2, 2011). I have a syrinx. I thought that I had relief for the first couple of weeks, but once I started weaning myself off of the meds, all of the pre-surgery symptoms came back and a lot of them got worse than before surgery. The only thing that the surgery helped was the debilitating headaches. I still get bad headaches, but not as bad as before. I had to have the decompression surgery due to the syrinx. I have not yet had a follow up MRI yet to see if the syrinx has started to get smaller. For some reason, I feel like it is getting bigger, due to the worsening of symptoms. That's most likely not the case, just me grasping at staws for an answer. Definitely get that spine MRI done asap! Good luck and keep us posted!
I have been scheduled for the MRI on Monday afternoon. I hope that it tells me what could be wrong with me now!? We will see, thanks for taking the time to respond...
Oh my… I’m terribly sorry that you are going through all of this,it sounds awful!
My best advice is to get an MRI of your spine and perhaps the other regions in which you are experiencing symptoms. The only thing that I can thik of that could possibly be going on that is related to Chiari would be Syringomelia.
Good luck and positive energy to you and your family.
<3
However, it is true that you only had your surgery a few months ago… Therefore, it is possible that this is just a rough point in your recovery process. The majority of the physical recovery can take 6 to 8 months. Good luck again and rest!
I am glad that your NS is on top of this....my thinking is that you may have a goofed up disk causing these issues...maybe a few disks....the bladder issue , to me anyway...sounds like a disk pushing on a nerve.....the MRI will show if there is any disk herniations...just my 2 cents.
You are in thought and Prayer..let us know how it goes.
My daughter had her surgery back in 2008. Just last year she has about all the symptoms that you have. She does have syrinx and its all down her spinal cord. Praying for you
