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.

Testing to see if reply is coming to u:

Just wondering if u hv explored the possibility of RSD aka RSDS, RSDSA I'm so sry your suffering as u r I certainly know what that's about after hv a normal life married raising kids and running a buisess then yr hit in the head with a disease neithier u and many ppl never heard of including many dr's at the time this RSD. I'm 55 now. I lost 17 yrs and a decent life filled with hopes and dreams due to this nitemare. I was told prior to diagnoses of RSD that I had neuropthy Im diabetic also so it was easy for dr's to say that. I have terrible stenosis in my neck, lower disk problems and this RSD that akes everything worse off to say the least. I became much worse after two failed surgeries on my neck, I cant remember the spelling of the two surgeries however they always say u hv this and that and the surgery will help a lot. Until the day of surgery when they say, "we will do our best but don't expect miracles ur in a very bad way". Im asking u about RSD bc the symptoms you hv relate in a big way so check it out, I've had the nubness from upper arm down to feet the tingling burning hot/cold for a very long time. The problem is it could be so many different things related that it's very hard to get the right answer. Keep exploring an push yr self everyday even when u want to give up bc u do matter and don't compare yr self with someone else being in more pain then u, pain is pain interruption to yr life matters no matter what stage or level of pain ur in. Find a real good pain management dr who cares and has dealt with RSD and don't be afraid to ask for med's that are really going to help u, after all it's u that hv to live with this the dr's go home and play a round of golf etc we go home and are up all night in pain waiting and wondering if this will ever get better. I know there is no known cure for RSD now but hbot seems to be helping some and it's used for many issue's, it's like re booting yr compt and starting fresh with healing. Plz explore RSD u hv nothing to lose but a few minutes of time. It hurts a lot to type but if u respond so will I. Yr in my daily prayers that's all that I can do but it means a lot. Wish u the best in finding out what is what and a little less pain. I'll look for ur response. Sry about he spelling and abbreviations it really hurts to type I hv to keep starting and stopping and correcting is not worth it I fig u can understand half words lol. Take care of yr self the best u can
Al

Thanks a lot for your response Al. Sorry for responding late, I didn't get any response here for a long time, so I stopped checking it regularly.

I checked out RSD, and as you said there is no cure, and they still don't really know the cause of it.

I think we have a very very limited understanding of anything related to nerves at the moment.

Lately, I've been feeling good, but whenever I do feel good, it always comes back at one point. I'm just trying to get used to living like this, and hoping that it won't get even worse once more.

Thanks a lot again for taking the time to respond. I really appreciate it.

Hi, I feel for you! Astrocycoma age 6 lower back came back two more times before age 12.

I'm 43 now Glioblastoma t6-t8 sigh... I'll be ok
The pain you have sounds crazy but force yourself to move. I was running a lot before this last episode. Even weights, ok so my theory is when you breath out it releases so much pain. I'm not qualified to really have a theory but, maybe? I cannot feel my right leg, haven't since a child so I fall a lot especially around the corners of a track lol... My kid loved when that happened.. You are so young, I hope you can overcome the pain.

Hi BrokenNinja,
You have a great attitude considering you have gone through so much from such a young age. Tumours of any kind, at any age are frightening - and then we are left with all sorts of issues from the condition or treatment.
Know that you have found here a supportive Community of friends who will understand your issues and lend an ear or shoulder as needed.

Dave.

Have you discussed arachnoiditis (inflammation in your spinal cord) with your doctors? Google it... shifting symptoms sound like it. Sorry - hope it's something else!