Might be ON or Inflammation

[lisa0617]

I had MVD surgery in Feb and now I can even lay down on the left side of my head. I have been diagnosed with ON by a pain specialist and my Neurologist said he thinks it is inflammation from the surgery and I might need more surgery. I feel like a zipper is being closed in the back of my head. I am also experiencing pain in my eye the pain specialist said it is trigeminal pain the Neurologist said no. I don't know who to believe. I know I am tired and can't sleep the meds don't always work and I don't want unnecessary surgery. Help!

[EE03]

Lisa,
I have both ON and TN but I haven't gone through an MVD. The ON is difficult to deal with and sleep is always problematic for me. I have had nerve blocks and RFA's done to the cervicals to treat the ON and they have helped the pain some, but they are temporary. The occipital nerves pass through the cervical vertebra and the muscles around the neck and head. Have you asked your doctors if the ON is coming from the incisions required for the MVD? The muscles are injured in the process of the surgery. Its just something to think on and to inquire about. I haven't read of any research that has tracked this, but I have read quite a few accounts from people who have had surgery involving the head or neck and have been left with ON. I also get eye pain from both conditions, but for me, the eye pain from ON comes from the inside. The outside eye pain is from TN. I don't know if this makes any sense to you but I don't know how to articulate it any differently.

Take care and I hope your next appts. bring you some insight. EE

[MarleneW]

Lisa,
I have had TN for almost 10 years. In 2003, I had an MVD and another in 2004. After the second one I developed ON, which I have learned is not that uncommon following an MVD. I had many treatments including acupuncture, botox injections, physical therapy, hypnosis, trigger point injections, nerve root blocks and nerve blocks all which failed miserably. In 2006, I had an occipital nerve decompression, some of the branches were decompressed, but some were caught in scar tissue so they had to be severed. This caused more pain than ever. Six months later I had a surgery that is not done very often. The surgeon did a laminectomy of C1 and C2 which are your first and second vertebrates in your neck. A laminectomy is when they remove the backs of the vertebrates, he did this so he could access my spinal cord, then he removed the root of the occipital nerve where it originates between the two vertebrates. To do surgery your head is hyperextented from the body and the muscles all around the vetebrates are cut away. After this operation the right, back side of my head is very numb, but more painful than ever. My neck has constant muscle spasm all the way to my jaws. My head has very little movement since the laminectomy. All in all the operation were not worth all the pain, but still I guess we try almost anything to get rid of the pain. I would say to you, try all the conservative methods you can before you ever give into surgery. I cannot take any pain medication as they all have adverse side effects such as vomiting, headache, hives,etc. I take neurontin, not a very high dose as it also causes many unwanted side effects for me. For the muscle spasms I take baclofen and occasionally valium. The best relief for me is vicks, heat and ice. Sorry to ramble on but sometimes it helps to hear that we are not alone.
If you have any questions just ask and take care.
Marlene