SUMMARY

I am currently 24 years old, and I had a spinal surgery in 2011 to remove an intramedullary cavernoma at C5-6 region. I also have a spinal (idiopathic) syrinx at T8-10 that is untouched. The surgery for the cavernoma was successful, and apart from a mild spasticity and weakness on my left side, and sensory problems on my right side (both of which was mainly caused by the surgery), I was living a healthy, pain-free, and pretty much normal life. Three years after surgery (in March 2014), I developed burning, tingling, pain, numbness, and different kinds of neuropathy, which doctors attribute to the changes in the spinal cord related to the surgery I had back in 2011, but they cannot see anything that can clearly explain it in any of the tests.

Is there anyone who developed neuropathy with no radiographic explanation years after a successful surgery?

IN CASE YOU WOULD LIKE TO KNOW, THE LONG STORY

Probably you wouldn't want to know, but I really need to let off some steam.

I started feeling a very mild numbness on my right big toe in around 2009. There was a sensory difference between the left and right side of my body starting around my belly button, and in the MRI doctors found a small syrinx (idiopathic) around T8-10, and attributed my problems to that. They recommended a check up every 6 months or a year, unless there was a sudden change in symptoms. I was not taken very seriously by doctors, and in two years, I started having burning sensations on my right leg, it also started getting tired much faster than the left one, and the temperature sensation on the right side went noticeable worse.

In 2011, one of the doctors asked me to get a cervical MRI, just to check. It turned out that I had an intramedullary cavernoma at C5-6, and they told me that it is the cause of my problems and not the syrinx. I underwent surgery in May 2011. After the surgery, the burning sensation on the right side completely went away, but I got motor problems on the left side, and sensory loss on the right side (loss of temperature, altered pain; light touch and position intact). I went through physical therapy for about a month to regain motor function on the left side of my body, which I mostly did. I never recovered from the sensory loss.

I was completely fine for three years after surgery. In 2013 I started doing some body-weight exercises every now and then, and was pretty healthy. One day, all of a sudden, I started having muscle tightness on the right leg, and then came burning sensation again. It got really strong, and I saw my surgeon. I went through a full spine (and later also cranial) MRI, and they found no change that could be attributed to my problems. He said he has never seen problems like this three years after surgery, but nevertheless thought that my problems were related to changes that are too delicate to see in the MRI. My symptoms got much better in a matter of days, but he still put me on gabapentin to make sure it would be ok.

In the following days and weeks though, the problems came back much worse, my right leg was very irritable to touch, I started having genital pain, and very strong pain on my right leg especially at nights when I was resting. I went through another set of MRIs, which again showed nothing. I also took EMG and SSEP tests, results were perfectly fine according to my doctors. I also have tingling in my hands from time to time, but it is very mild, and I don't even know if the cause is the same.

Since then, I have been on medication (currently 1800mg of gabapentin), and my problems come and go. They change a lot, sometimes it is tingling on my feet, sometimes it is burning, sometimes it is irritation to touch and strong pain for days. Sometimes though I feel fine for days.

I have also seen other doctors, and they tend to differ in their opinions. Some say that, I should be careful with physical activity and while moving my neck, and some other doctors say that it is not related to my physical activity and I can do anything I want that a completely healthy person can, even lifting weights.

I really don't know what to do, or who to believe. I understand that they can't see the problems in the current diagnostic tests they have, but it is still very emotionally draining. For example, since last week the tip of my right big toe is numb, and I am not sure if it will go away, or if I should get another test done, if it's related to something I did, or even if it's related to the surgical region or related to the syrinx. My right side is also irritable to touch most of the time.

I am 24 years old, and this is really affecting my life a lot now. Just when I seem to get over it, I start having a new symptom, and I don't even know why it is happening. I really want to exercise, go running, or do some body-weight exercises, but I am too scared to do anything now.

I know there are people much worse than I am, and I can only imagine what they are going through. I really admire their strength.