Pain at top of head after surgery?

Hi - I had surgery in April 2012 with duraplasty and everything seemed to be going according to plan until July 2012 when my head suddenly went into severe spasms. I had extreme photophobia and ever since I have had circular pains on the top of my head that feel like screwdrivers stuck in my head that I can never get out. I've also experienced this in my face, but it is always on the top of my head. Has anyone else experienced this? I've been told that they are muscle spasms, but I have my doubts as it has been a year and a half and muscle spasms are sudden jolts that eventually go away. These never go away - they are continuous and just vary in their intensity throughout the day. If anyone else has experienced these and know what they are I would be so appreciative for any insight at all :) Thanks.

Kim,

I am so sorry you are having these severe problems. It sounds horrible. May I ask you a few questions to help me and others understand better?

Can you tell if the pain is starting exterior running interior? Is it scalp pain or inside your cranium? Is it always in the same exact places? Do you feel pressure at all? Is it multiple small locations or a so many inch circle of pain? Where on your face are these pains & have you had any burning sensations? What do they feel like on your face? Does it feel like ice pick stabbing deep pain?

I have an idea of what you may be experiencing but would like to know your answers first. I had similar pain for 4 years. What do your Dr's say? It took me 52 specialists to be diagnosed & successfully treated. Do not give up hope.

Tracy Z.

Call your Neurosurgeon. Unfortunately Chiari is so new to these doctors they sometimes don’t know what can happen. I would ask for another flow study TESLA 3 MRI and see if the fluid flow is normal. If it is then they can try and pinpoint what exactly is wrong. Maybe you are having seizures. They are supposed to be the experts I would ask them. Hope you get answers & some relief.

Dont call ur neuro. Call an omd. Oriental med doctor. Acupuncture will relieve this pain you feel. I had surgery august 2012 and didnt really get relief until acupuncture. That pain on top is the center of a lot of signal nerves that channel from other places. Your body doesnt like that it was cut open. Im guessing you have some other symptoms, like skull pain around ur ears or in back. Our neck has been extremely traumatized. Do not try physical therapy. Get your muscles and scar treated with acupuncture. I was not for trying it until I had enough of western doctors not doing me any good. I get acu-treatments in my legs hands neck back and continue to enjoy it and need it. Good luck healing. Rest. Take it easy. We did a lot.

Thank you all for your responses. It is a pain that is mainly in my scalp area, not inside the cranium. Usually it is localized to about 1 inch circles on the top of my head and then the other circles vary in their locations. The past couple days the location is around my cheeks and the tops of my ears (though that doesn't hurt like the top of my head does, it's just there) and the very top of my head and a few inches behind the very top of my head. I also get a crushing feeling like an ice cream scoop is scooping out my right top half of my face. (Sorry this is so descriptive - not sure how else to describe it lol). I also get pain behind my eyes at times and can't look at light. But right now at this moment I don't have any of that, I just woke up and it all seemed to mesh together in what I call a helmet of pain. Feels like someone hit me with a frying pan on the back of my neck, back of my head, top of my head, and forehead.

My neurosurgeon has pretty much written me off and said that I shouldn't be having these headaches and that it's the result of something other than the surgery. So I've seen a separate neurologist at The Chiari Institute who has said that these are muscle spasms that I'm feeling. He also said that I'm somewhat flexible and that contributed to my longer healing time (though I'm not really that flexible, but I guess the angle in my neck is a little bigger than most, so he said that it takes a little longer for my muscles to heal themselves than it would other people or something like that). He said that what is happening is that my body is not used to the artificial dura that was put in and that it sticks to my tissues, etc. every time I move my neck. Until my body realizes that it's okay and that it's staying it will continue to fire off these muscle spasms whenever I move my neck in an extended fashion. He also said that this is extremely common, and that he's seen it happen quite often. He seemed very confident that this is what was happening and said that I'm 1.5 years into a 3 year recovery. This would be a fine answer to wait on, but my concern, however, is that I've had muscle spasms before and I know what they feel like. They are painful, yes, but they are sharp and they go away after a couple minutes. These don't go away unless I take medicine or go to sleep. Also, the fact that my neurosurgeon, who I've been told by The Chiari Institute and others is quite reputable in the field, had never heard of this really concerns me. I just want to make sure that I'm not sitting around on a wrong diagnosis, you know? Thanks again for all your responses. Most appreciated :)

PS - to finish answering your questions, no, it's not a burning or stabbing pain, it's more of a constant pain in these various circles in my head - just always there. I've had that burning/stabbing/electrical pain before in the very beginning of all this, but that went away after about a month or so.


TracyZ said:

Kim,

I am so sorry you are having these severe problems. It sounds horrible. May I ask you a few questions to help me and others understand better?

Can you tell if the pain is starting exterior running interior? Is it scalp pain or inside your cranium? Is it always in the same exact places? Do you feel pressure at all? Is it multiple small locations or a so many inch circle of pain? Where on your face are these pains & have you had any burning sensations? What do they feel like on your face? Does it feel like ice pick stabbing deep pain?

I have an idea of what you may be experiencing but would like to know your answers first. I had similar pain for 4 years. What do your Dr's say? It took me 52 specialists to be diagnosed & successfully treated. Do not give up hope.

Tracy Z.

I would demand an MRI and a new Neurosurgeon if he just wrote you off. That's crazy.

I would ask your NS two questions:

  1. Does he think it could be Occipital Neuralgia?
  2. Is it possible you have a Cranial Nerve Disorder?

I have Geniculate Neuralgia and had MVD surgery in 2004 for ice pick stabbing pain. Your symptoms also are similar to other types of Cranial Nerve Disorders like Occipital Neuralgia & maybe Glossopharyngeal or Trigeminal Neuralgia. A good NS will be able to view a brain MRI and make a correct diagnosis. I get Nerve Blocks for Major Occipital Neuralgia & they help considerably. It honestly took me 4 years to be diagnosed correctly & 52 specialists for the Geniculate Neuralgia.

I also agree with Kyle Oriental Medicine Specialists are incredible. Mine has helped me immensely. If you have a compressed cranial nerves though they will need to be decompressed. I would at least ask your NS for a MRI and if he would check you for Cranial Nerve Disorders. It won't hurt if I am wrong, but nerve pain is causing your pain & it's worth it to see what is causing the nerve pain. Most Chiarians deal with Occipital Neuralgia at some time. Some worse than others ,but not the stabbing face ,ear, throat, jaw, & mouth pain that other Cranial Nerve Disorders bring with them. You can also consult with a pain management specialist. they are great diagnosticians and think more out of the box than NS.

Thanks so much. One specialist actually diagnosed me with Occipital Neuralgia and performed nerve blocks last year, but they sent me off the table in pain. Not sure if she did them wrong or what, but it was one of the worst pains I've ever felt and it took me about a month to get back to my prior baseline after that. My current dr and my surgeon don't think that it's occipital neuralgia based on my reaction to the treatment, but the symptoms do seem to be very similar. Who knows. Anyway, thanks so much for your advice, I'll look into it more with my doctor and consider the oriental medicine specialist.

Hello again. After i wrote to you about acupuncture, i checked out your profile. It didnt cover many symptoms u have now. But i knew you had pain all over your head. Around the ears, all over the skull. If you ask a regular dr about acupuncture, he will tell u not to waist your time. The fact is Kim, doctors so not know how to treat what we suffer with. And you finding relief in eastern medicine means your other americanized doctor will lose money. I started acupuncture april of this year, and now i take No meds. Do you think my neuroLIGIST would like that. NO. and yes im still dizzy, confused, tired, and suffering in pain. Im not distroying my body with CRAZY understudied pills. I still have pressure in my head and pain from ear to ear, i just get it poked and it fades. The body knows how to heal we just need to help it correctly. I was taking meds all day before i started with an omd. I take an occasional pain killer now. I really want to share with tge world, we have other options. Dont just listen to western drs. They want you to only see them. They want your money

Well said Kyle. So true. My daughter doesn’t have that pain (that I know of) she has neck & upper back pain & I take her to a NUCCA Chiropractor which helps immensely.