Posted 6/28/2019 2:14 PM (GMT -7)
I have recently been told my spinal fluid leak is non-treatable. I saw what I believe and accept as the best in the field that is available to me. I have been waiting for several months to have a neurologist agree to see me as 11 turned me down since I am on work comp and my condition is what they call rare. I am hoping that the neurologist does not work out of a van in an alley and actually has an office. (Joking)I just refer to myself as special not rare. Since it is inoperable and no other options are available at this time it has caused my PM to look at treating me differently. Before, he stated that he wanted me to try medical marijuana but would require me to quit the pain meds. Now, he is going to consider allowing me to continue my meds and go on medical marijuana. Tht will depend on the findings of the neurologist that I see next week. That will help in 2 areas of my concern with switching to MM. I hopefully will have access to both if needed and it works, and if I travel to see my kids, I can at least have my meds to help since getting MM while traveling is difficult and in some instances impossible legally. Since the chronic pain issue will continue and is effected negatively by the spinal leak, the PM is willing to look at allowing me more control of my pain meds. The long term effects of the spinal fluid leak can cause symptoms that mimic dementia, Parkinson's, and ALS. My son flew in to see me last week and took a picture of me skinny dipping in our "private pool. Then he posted it on his facebook and stated it was not the usual father son bonding event. I responded that in my condition it is easy to forget things like my clothes. I am hoping the neurologist will give me some help with navigating this if and when any or all of the symptoms manifest themselves. That bad news can actually mean more help. The good news also means that if my body chooses not to heal itself, the road is possibly going to be a little bumpy. The neurosugeons will not look at another surgical option unless I experience a catastrophic event or I lose my eyesight due to the present CSF leak. Life has no guarantees so I am going to find ways to enjoy where I am at even more. Thanks for listening.