Post by tfowler1020 on Apr 8, 2017 9:42:03 GMT -6
I'm new to this community. Looking to see if anyone has or had this situation that is willing to share your story please.
I was diagnosed on 11/30/2016 (my 31 yr wedding anniversary) with what is thought to be a Schwannoma. It is approximately 5mm (small pea size). My first issue was in late 2014 with what had been diagnosed as peripheral neuropathy in the right arm. My arm goes very cold, tingles, numbness and have tremors at times. Was treated for over 2 yrs with an epilepsy med, which seemed to calm it down, but no root cause. I actually decided to get a 2nd opinion and to pursue why I was having memory issues and brain fog (family hx of Dementia and Alzheimers), hence the 2nd Neurologist. She found the SCT in my spine. It actually showed up on a previous MRI 21 months before, but I was not told that - maybe arthritis in my neck was the reference. Went through PT for muscle spasms in my neck. That did help immensely at the time.
Great news, no issues with the brain (Dementia and Alzheimers)! Bad news on the SCT in my cervical spine! Multiple tests and Dr's later, they think it is benign even though my antibodies are up. Fibromyalgia is presumed the culprit of my brain fog. Doing all the follow ups that came out of the PET scan (although no obvious cancer showed up - other issues did).
More recently, a Nerve conduction study indicated my arms and legs are okay - some muscle irritation in the neck and lower back. However, I still have numbness & tingling in my feet and the arm is the same. Just looking for thoughts from those that have gone before me with this. I know this is rare and even more so supposedly in the neck. Was told surgery will leave me with some neurological issues (mild to severe) and that the tumor will tell us when it needs to come out. How will I know when it is ready to come out? What should I watch for, from someone that has been there and done that. My 3rd MRI is scheduled in June 2017. Some days/weeks, I don't think much about it (other than my arm & both legs - otherwise, no pain or obvious signs) and some days reality slaps me in the face that I have an SCT in my neck. Very scary! Thanks in advance for any insight or wisdom!
I was diagnosed on 11/30/2016 (my 31 yr wedding anniversary) with what is thought to be a Schwannoma. It is approximately 5mm (small pea size). My first issue was in late 2014 with what had been diagnosed as peripheral neuropathy in the right arm. My arm goes very cold, tingles, numbness and have tremors at times. Was treated for over 2 yrs with an epilepsy med, which seemed to calm it down, but no root cause. I actually decided to get a 2nd opinion and to pursue why I was having memory issues and brain fog (family hx of Dementia and Alzheimers), hence the 2nd Neurologist. She found the SCT in my spine. It actually showed up on a previous MRI 21 months before, but I was not told that - maybe arthritis in my neck was the reference. Went through PT for muscle spasms in my neck. That did help immensely at the time.
Great news, no issues with the brain (Dementia and Alzheimers)! Bad news on the SCT in my cervical spine! Multiple tests and Dr's later, they think it is benign even though my antibodies are up. Fibromyalgia is presumed the culprit of my brain fog. Doing all the follow ups that came out of the PET scan (although no obvious cancer showed up - other issues did).
More recently, a Nerve conduction study indicated my arms and legs are okay - some muscle irritation in the neck and lower back. However, I still have numbness & tingling in my feet and the arm is the same. Just looking for thoughts from those that have gone before me with this. I know this is rare and even more so supposedly in the neck. Was told surgery will leave me with some neurological issues (mild to severe) and that the tumor will tell us when it needs to come out. How will I know when it is ready to come out? What should I watch for, from someone that has been there and done that. My 3rd MRI is scheduled in June 2017. Some days/weeks, I don't think much about it (other than my arm & both legs - otherwise, no pain or obvious signs) and some days reality slaps me in the face that I have an SCT in my neck. Very scary! Thanks in advance for any insight or wisdom!