New diagnosed / Need of Understanding
 

Hello, I have been chronic pain sacral and cervical -no prior L-Spine .Cervocal c6/7 Narrowed now.I have psoratic Arthritis , pain and fatigue for years . The TC was discover after I working out at gym -Just was walking ,I sudden pain in mid back like knife.The spasms started all muscle in back and Abdomen -Never have stopped.Seen Neurologist as Primary has never heard of TC and Neuro says suppose to be asymptotic .Sent report to University of MD , Neurosurgeon willing to see me and I am awaiting T Spine since mine are L-1 and T 10-11 .My issue is no one can tell me : 1. Am I tired due to TC ? -Became suddenly tired and no gym now. 2. Do they react like MS or neuro condition disease ? 3. Why would doctor dismiss these TC ? after all I work out everyday despite chronic C-Spine and Sacral issues .Now I went from walking to weakness left leg and pain left mid back to butt into bladder n **** spasms .Like someone has taken over my body .Getting abdominal spasms as well.. I understand nerve it travels fires the muscle.The doctors are playing this down.Very frustrated that this has impacted my life so suddenly.Does this mimic other Neuro diseases ? Thank you

Me too
 

Hi, I was diagnosed in 2011 while being treated for cancer. The chemo made the TC worse even though I had been having issues for years, I didn't know what it was until having a CT for the cancer.

I have seen a few NS the most recent today. He was very nice but said that TCs aren't usually symptomatic and began talking about a plan for physical therapy and steroids for a disc issue seemingly unrelated to TC.

It's so frustrating to know more than the doctors about TCs and try to tell them and they seem to not get it.

The first NS I went to yelled at me "What do you want me to do about it? It's full of spinal fluid and blood vessels!"

I had another MRI done last week and now am scheduled for another two next week. I insisted that it be done because I can tell there are more issues. I know I get fluid imbalances and fear leaks because of the headaches.

I found out that the pain in the middle of my back is another TC and the one in my sacral area is now over seven centimeters. That is a HUGE cyst and I think it scares the doctors and that's why they seem to want to avoid it.

To be told that I'm not having symptoms when I have had so many and some severe and terrifying is maddening.

Thanks for listening.

Dr. Frank Feigenbaum in Dallas. He is specialist for TC.

I second the recommendation to see Dr. Feigenbaum.

It is hard to find any doctors that have experience with them even at top care centers. I saw Dr. F before being seen at the Mayo Clinic for Tarlov cysts and other issues and am thankful I did.

It is also critical to find an open minded doctor to help with pain care. You aren't crazy, just in pain. And the pain is real, not something in your head.