Occipital neuralgia, referred to Mayo and worried I won’t be accepted
Three years ago I started waking up with a horrible pain shooting from the base of my skull, over my head, and into my eye. Only on the right side. It lasted a few minutes and then I would go back to sleep. As time went on, they became more frequent and lasting longer. (I currently have 6-12 per week, and they can last anywhere from 20 minutes to three hours.)
A trip to my pcp, who is also an osteopath, resulted in getting my neck popped. This went on for several more months, with no relief, and I also started noticing a bit of weakness in my right arm along with some tingling in my pinky finger. Xrays showed arthritis in my neck, along with spinal straitening, so my doctor gave me a few exercises to do. Next was an EMG nerve conduction test, which showed nothing at that time.
After nearly two years of these horrible headaches, which were waking me up a few nights per week and lasting a few hours, my doctor sent me for physical therapy (at my request). My pain eventually started to get worse and my therapist finally refused to treat me until I had an MRI. Well, that came back showing extreme nerve impingement of my c5-c6, and minor to moderate bulging/herniation of c4-c5 and c6-c7. My pcp was livid!! He apologized for waiting so long, and then sent me to a neurosurgeon who did a fusion of the c5-c6 in July of 2020.
I woke up from surgery in extreme pain. It was like someone had beat my upper back (where it meets your neck) with a baseball bat. Not what I was expecting. And over the next few days I noticed that my right arm was useless. When I would try to use it, it would flop like a fish. I had no control over the muscles. My surgeon immediately sent me for an MRI and CT scan, but everything looked fine. He then sent me for an EMG nerve conduction test and it showed a brachial plexus injury. I was sent to a specialist three hours away, who gave me specific exercises to do. After about four months, I was finally able to use my arm at about 80% of its normal range.
Unfortunately, the surgery did nothing for the headaches. In fact, I now have them more frequently, and even get them during the day. I can no longer sleep on my side. I have to lay completely flat on my back, with no movement during the night. Just moving my legs or arms even slightly can cause my head/neck to shift into a position that will produce a headache. I tell people that I sleep, but not comfortably. It’s like my subconscious stays awake all night to make sure that I don’t move. I have always been a side sleeper, btw. Have always hated sleeping on my back. So this is pure torture.
My surgeon eventually sent me to pain management, where I was diagnosed with occipital neuralgia. The nerve block did nothing, because I wasn’t having a headache at the time, so they suggested therapy and dry needling. That has somewhat helped my neck and upper back pain, but has done nothing for the headaches.
They have also recently tried facet injections of the c2-c7, as a test to see if I was a candidate for nerve ablation. I just didn’t feel much different immediately afterwards, while the anesthetic was still doing its thing, so I was too nervous to continue on with letting them burn the nerves.
After consulting with my surgeon, he says that I have been through too much and wants me to be seen at the Mayo Clinic. Pain management also said the same thing, and has also put in a referral.
I’m absolutely exhausted, and even hate going to bed now. I dread it every night, because I just don’t sleep well anymore. I average about five hours of sleep, that is sometimes interrupted by headaches, and I’m forced to sleep uncomfortably just to try and avoid having one.
My biggest worry now is that I won’t be accepted as a patient by the Mayo Clinic. I’ve heard of people being denied, because they either thought that they couldn’t help them or because they had not exhausted all treatment possibilities locally.
A bit more info: I’m currently on gabapentin, which I don’t feel has done anything. They put me on it for the brachial plexus injury. I’ve tried other medications that also did nothing. Including pain medication.
I can’t sit at a computer for more than a few minutes, or I run a high risk of having a headache (I’m typing this on my phone, and taking breaks every few minutes). Cooking can sometimes be an issue. Pretty much anything using my right arm, or having my arms out in front of me, can cause problems. Riding in a car that sits lower to the ground than my SUV is another weird thing that will bring on a headache. And sleeping in my recliner is another big no no.
The pain feels like a red hot poker being stuck through the base of my skull and coming out of my right eye. When it’s at its worst, I just want to claw my eyeball out. Ice packs are my best friend, and my freezer is full of them. I’ve learned to have backups, in case one springs a leak or I have to use more than one per night. It’s almost become a joke when we open the freezer and wonder what to cook for dinner. I’m sure you can guess the joke. LOL!
By the way, the headaches are nothing like migraines, which I’ve had a few of (around five) during my lifetime. This is total nerve pain. And I’ve noticed that the neck muscles located under my ears get super tight when I’m having one. I also get a bit of tingling in my right arm and pinky finger, along with shoulder pain. But the weirdest symptom is that my sinuses on the right side will stop up. That’s one of my warning signs at night. If I feel that happening as soon as I lie down, I know that a headache is on it’s way.
Over the past three years I have spent a small fortune on pillows, desk chairs, desks, mattresses, tens unit, workout equipment, and anything else that might help. I’m at my wits end with it all.
Sorry if this all sounds a bit rambling, I was trying to get in as much info as possible, without writing a total book, and sometimes I would think of something to add that didn’t quite go along with the timeline.
So, does anyone think that I have a shot at being accepted as a patient?
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Good evening and welcome to MAYO CONNECT. I would like to begin by thanking you for putting so much of your story in your greeting. As you may already know, we are a group of patients, providers and caregivers. By sharing our “been there, done that” experiences and introducing you to fellow members, we hope to provide the support you seek.
Although I have had the cervical fusions like you, I have to say that I have never had the headaches. I get the numbness and tingling on my skull frequently when I let the daily stress of life get me down,
Do you have a diagnosis of neuropathy? Have you had a skin punch biopsy to test for small fiber neuropathy? I noted the sinus issue and wonder about that symptom. I can’t imagine your sporadic sleep nights. You use ice like I do…….because it works.
Before I say good night and sweet dreams…….have you tried medical cannabis? That is my sleep insurer. You may also benefit from MFR Myofascial Release therapy. I have my neck area treated twice a week. Neck muscles under the ears can be particularly tight as you mentioned.
I think your other issue is a tough one. Gaining admission to Mayo as a patient is not always easy. I have applied or my pcp has applied for me and I have been kindly rejected three times because there was nothing that could be done any better at Mayo.
Are you seeing a Neurologist now?
May you be free of suffering and the causes of suffering,