Hi all, I'm new here and thought I would put some questions out. I'd love to hear what anyone thinks.
I was rear ended in a car accident 5 1/2 years ago. At the time of impact I was twisted to the right doing a head check through the rear window of my SUV. I was unconcious for a short while (under 5 mins) and immeadiately upon comming to was aware of severe head pain at the back of my head. This pain is there constantly ever since. I have seen numerous specialists - 3 neurologists, a neurosurgeon, a Pain Management specialist, done a 3 week pain management course, had 4 MRI's done over the years as well as one CT scan. I have been told my scans show minor disc protrutions in my neck and also in my lower back, and some disc degeneration at the base of my skull. There are also small cysts there. Noone seems to think this is a problem.
At the begining of this year my pain became much worse, at which time I was admitted to hospital for a stay of 8 days to try to control the pain. 2 months later I was back again, this time for 14 days, during which time they tried numerous medication - morphine, oxycontin, fentynal, endone, valium, neuorfin and panadol. After none of this had any impact on the pain, the pain specialist tried a ketamine infusion. I reacted badly, and my vitals were low, so I didn't contiune the treatment (which was supposed to last 14 days). Then he tried botox, with no apparent difference.
Since leaving the hospital that time, I have had numerous 'flare ups' - sometimes three times a week. When this happens, I experience severe head pain, which is like a hot ball of fire at the back of my head and then travels in sharp spikes over the top of my head and into my nose and cheeks. There is always a kind of numbness at the back of my head too, which make it feel very weird. The pain also goes down my neck and into my shoulders. Up until the begining of this year that was where the majority of my flare up pain was felt. Now I have severe pain in between my shoulder blades - a pinching like sensation that sometimes affects my breathing. The pain has continued down my spine over the past few months, and only last week the pain has travelled all the way down my legs. As it is today, I have sharp hot pain all over my body. With all this is a pressure that is unbearable in my head, like it is being crushed - at it's worst I feel like my head will explode. For awhile now I have had dizziness (kind of spacy) and nausea ( when it first started I did a pregnancy test) and it is somehow affected by movement, especially when I bend over. Concentration is SO hard with this feeling.
I am 28 and have two small children and am desperate to get some relief or even know what is going on. All the specialists have been able to say is that I have nerve damage that is undiagnosable and the only treatment they can offer me medically is to implant a stimulator.
I am otherwise healthy, eat well, walk everyday, do some small amount of whatever excerise my body will allow, and stretch to keep myself somewhat functional. The things that cause an increase in pain are: car travel, vaccuming, mopping, lifting, anything that requires physical effort for more than 15 mins, sitting, lying down and any arm movements.
I am very concerned about this increase in pain and the area of pain... does anyone have a similar experience? Know where to go from here?
Your head pain sounds like what doctors often refer to as cervicogenic pain, which is to say that the pain is caused by a defect or trauma to the neck (this is an overly-simplified definition, but you can "google" it to get more information.) Your imaging studies confirm that there are issues with your spine in the neck region, and it is very likely that there is more damage than has been noted. I've been dealing with (and researching) cervicogenic pain for the last dozen years or so, and I have met many people with this problem. While many people experience muscular cervicogenic pain, it's the nerve pain that is often the most severe AND the most difficult to treat. Nerve pain is notoriously hard to treat, and typically doesn't respond well to opiates or other common pain meds.
I recommend asking your doctors about meds commonly used to treat nerve pain, such as Tegretol (carbamazepine,) Elavil (amitriptyline,) Pamelor (nortiptytline,) Lyrica (pregabalin,) Neurontin (gabapentin,) and Cymbalta (duloxetine.) There are many other drugs to consider, but this list is not a bad place to start.
Have you had any relief from nerve blocks? If so, you might be a candidate for pulsed RF (radio-frequency) ablation, although this usually doesn't provide permanent relief; it is common to have to have the procedure repeated. There is a risk of the pain coming back even worse, but RF is definitely an option to discuss.
A stimulator might provide some relief, but it sounds to me like multiple nerves are involved in your pain, so this might complicate your treatment. Peripheral nerve stimulators (the most commonly used) are most effective when a single nerve is affected.
There's also a procedure known as lidocaine infusion, worth considering given that your pain has spread to several areas of the body.
Another option to consider is an intrathecal pump, which is similar to epidural pain blocks. Your pain doctor can give you more information about intrathecal pumps, and should be able to tell if you would be a good candidate for the procedure.
Finally, there are things like deep-brain stimulation - usually reserved for severe Parkinson's Disease, but sometimes used for intractable pain. Other doctors have had success stimulating various regions of the brain; a neurosurgeon should be able to discuss these things with you, which are usually reserved for the most difficult pain cases.
My sympathies to you. Try to stay as active as possible, and be sure to advocate for the best care you can get. I have (unfortunately) had to see dozens of doctors and try at least as many medications and procedures, but I have had significant relief with several of the medications I listed earlier. I am currently on Cymbalta (60mg/day) with very few side effects, and most of the nerve pain sufferers I've spoken to have had at least some relief from one or more of these drugs. You still have options if you haven't tried each of these medications. Good luck - you deserve it!