Hello all. Thanks in advance for reading this. I was just diagnosed with CM1 last week. I meet with a neurosurgeon on Friday to discuss the surgery that is usually required, but have a few questions in the meantime. I've read through numerous comments on this site, which has been greatly helpful. One common thread seems to be the unbelievable amount of post op pain everyone seems to experience. Is this pain worse than what you are experiencing prior to surgery? It's a bit nerve racking having to think there is a possibility that my pain levels will be worse after surgery, if even only for a short period of time. Also, when most people are describing their symptoms, they talk about having headaches that are more intense than normal, and lasting a long time. In my case, the headaches I get are right after coughing, laughing or basically any other activity with even only a small amount of exertion. They only last between 30 seconds to a couple of minutes, and are more intense and powerful than anything I can describe in words. They literally knock me off my feet, and I've even passed out a couple of times. I can't drive anymore due to the headaches, so this illness has basically taken over my entire life.
I have been treated the past year as having fibromyalgia, as I have lots of pain all over. It's not just the headaches, although they are probably the worse part. It has only been recently that the headaches have become more frequent and more powerful, so I sought out a Neurologist to see if anything else was going on. The result...CM1 !! I also have very little to no energy on the vast majority of days. Is this a common symptom for anyone else?
I have been dealing with chronic pain for over 4 years now, and it has just worn me down physically, financially and emotionally. I just feel like giving up most days, although I never actually will. I'm not even sure how I'm going to pay for any of this, as my short term disability has expired. If approved, LTD won't kick in for another 2-3 months. So, with everything else going on, I'm now broke and not sure how I'm even going to pay my mortgage in a couple of weeks. On top of that, I have a 7 year old (AMAZING!!!) daughter who doesn't know what's going on. I have shared parenting with my ex wife, but she will surely file for full custody when she finds out about my condition because that's just the type of person she is. Although she more than likely won't succeed in getting full custody, the added stress and financial burdens are just more than I can take right now. The stress level I'm experiencing right now is ENORMOUS, which I'm sure isn't helping my physical condition at all.
Well, I could go on and on and on and on, but I'll stop here for now! Thank you to everyone who took the time to read this. I just needed to vent a bit, and it means a lot to me that complete strangers will take the time out of their day to read and respond to this discussion. My father once told me that the most precious gift you could ever give someone is your time. I mostly agree with that!! I'm sure all of you are completely busy with your own recoveries and day to day life, so again, it does mean a lot to me. Oh yeah...I've been in the chat room on this site about 10 times now, but no one ever talks. Does anyone use this feature of the site? For me, it seems like it would be helpful because you can get immediate feedback. Oh well...thanks again and God bless.
Trever