Hi everyone... My first time posting on a Chiari site. I was diagnosied with Chiari back in 2002 and had surgery at that time.(this is what i had done, i do not know medical terminology bare with me its been so long... they cut C1, placed a patch in the dura, shrunk the tonsil like part of the brain that was protruding and also shaved part of my skull) Ever since then my scar has been very sensitive and lately has gotten worse to the point where if i apply any small amount of pressure i get an instant headache that lasts for hours/days. my headaches and numbness subsided after the surgery untill a few years ago. i was then diagnosed with chronic daily headaches/migraines. ive seen numerous neurologists and tried many different meds to prevent headaches and nothing has worked. ive had MRI's done and they said there is no issue with the surgery or anything around it. has anyone else experienced anything like this or have suggestions what to do? any help is appreciated as my doctor just seems to think tylenol and sleep is the answer. I have two very active children so these headaches are really wearing me down and i need to figure something out.
Hello
Given the time from surgery and your increased sensitivity it seems like central sensitization is going on - no doctor though! Neuro-orthopedic Institute (NOI) has excellent resources for understanding pain that defies explanation and what to do about. If you can find a pain specialist who has trained in these courses and understands this new fangled concept of pain that would be great. Graded motor imagery and scar management might be of help to you. Maybe gentle scar massage below the threshold of pain? - can seem wussy but maybe that is where you need to start! No quick fixes and takes work on your part.
You may also want to ask about occipital neuralgia. When the muscles are pushed to the side during surgery, there can be irritation of the greater occipital nerve, which can give point tenderness near the scar, usually radiating up and to the side.
Treatment can be medical or surgical(it is a sensory nerve so it can be removed with no long term issues(some short term numbness but that is usually welcomed in those with chronic pain in that location).
Thank you both for the information I am going to look into all that further and hopefully get some pain relief and a doctor who can help me!
Kim, I had decompression in January and believe I now have occipital neuralgia. The back and top area of my head is very sensitive. I can’t sleep on regular pillow, leave my hair down, wash my hair, or touch the back of my head without pain. Getting a chill is painful and even the wind blowing on the back of my head hurts. I also get stinging, burning and stabbing pain above my scar on the top back of my head. I sometimes get stabbing pain in my temples. My surgery was successful and I am very happy I had it done. No chiari headache since and most of my other pre op symptoms have not been active. Unfortunately though, this is very painful and is definitely interfering with my quality of life. I don’t want to have quarterly injections or daily meds so if this is not temporary I hope surgery to fix it is a viable option. I hope you find a treatment that works for you. I joined a support group on Facebook that you might want to look into, all you have to do is search for occipital neuralgia. It is a closed group of almost 3,000 members. Take care. ((hugs))
I had surgery Oct 5 of this yr and have been experiencing issues sleeping on a regular pillow top of head and back of head are very sensitive at times I thought maybe it would go away in time but now reading all this I’m wondering if the occipital neuralgia is what I have been experiencing. For me I recently had something happen that I’ve never had happen before…when I went to the grocery store I heard a loud noise and normally its like okay what is that and I’m okay but on that occasion it startled me to the point where it caused almost like a panic attack I ended up with a headache and even nauseated.
I am so glad you posted this! I was searching to see if anyone else had experienced what I am before I started a new topic, and this is exactly it. Stinging pain (feels like nerve pain?), above my incision, and at the top of my head. It occurs randomly, but also whenever I get chills, which made me feel crazy. I’m about 2.5 weeks post op. Thank you for sharing this info!