Monday, December 10, 2007

6 months later...

WARNING: this is a wee bit long.... It has been 6 months since I read Life Beyond Headaches. It has been 6 months since we found the wonderful Dr. Randy James, the atlas orthogonal specialist, who has fixed Ben's headaches. It has been 6 months since headaches stopped ruling our lives.

833 days ago Ben got the "worst headache" of his life. It came on suddenly on August 29, 2005 while we were folding laundry before bed. Ben grabbed the right side of his head because the pain was so intense. The area above his right eye was visibly swollen. It felt like someone was stabbing a spike through his eyeball. Ben had gotten headaches like this in the past (just not quite as intense) so we were not concerned. He took some medicine & went to bed.

That day we had been working on laying flooring in our condo. It was also the day that Hurricane Katrina hit. Nothing too out of the ordinary that would cause such a horrific headache. But it was the day that his headache started & took control of our lives.

In the days & weeks that followed we went to the ER at least 5 times. CT scan, xrays & MRI all came back clear. The spinal tap came back clear. Nothing looked to be wrong. At this point we did not have a diagnosis. All they did was pump him full of narcotics & steroids.

Our first neurologist called it a "chronic migraine" and only wanted to inject him with botox. But before insurance would cover that, you have to try 3 other migraine treatments. So we tried 3 different drugs, topamax, maxalt, and DHE treatments. None did anything to relieve the headache though. The pain was so bad that Ben could no longer work. Looking at a computer for any length of time increased the intensity of the headache. Being under fluorescent lights increased the intensity.

After the 3 treatments & 3 months, the doctor said there was nothing else he could do except try the Botox. Not wanting that, we researched other options & found the Michigan head pain clinic. The neurologist signed off on it. And we were all set for an appointment Dec 19, 2005 for a 2 week examination. But insurance would not cover it, since it was out of network. We could not afford the $10,000 fee so we were back to square one.

We found a new neurologist who called it "chronic daily headache". She recommended physical therapy & some more drugs. After about a month or so, the physical therapy started to help. The intensity of the headache would lessen. Not go away, but would lessen. With the physical therapy, Ben was able to go back to work.

His physical therapist felt that there was something wrong with his neck though. Every time Ben would come in, the right side would be locked down, like it was protecting the spinal cord. The worse his headache was that day, the tighter the neck was locked down. The body was trying to say something was not right.

So she recommended we go see a neurosurgeon she worked with. The neurosurgeon looked at his MRI, CT scan & xray. What he found was cervical spinal stenosis. And what he told us was that there was nothing he could fix. Yes, his spine was "ugly". But fixing it to make it look pretty was not going to make the headache go away. And he would not do neurosurgery to fix "ugly". (Which we were very thankful for, really who wants surgery especially near the brain if it's not going to make you better.)

So he recommended we go see a pain management specialist. We started seeing him in June 2006. The specialist decided that nerve blocks were the best way to proceed. Se we started the nerve blocks between his C2 & c3 vertebrae. The first one proved to be successful. It was 2 weeks before our wedding. Ben was essentially pain free. It last through our wedding and through the honeymoon. It allowed us to not think about the headache & enjoy our special day. But then pain started to come back. So they did another nerve block. And another. And another. And another. The time between nerve blocks was getting shorter each time when it should have been getting longer. So the PM specialist tried nerve blocks in other places on his cervical spine. But by Dec 2006, the nerve blocks were no longer working & he told us there was nothing else he could do. So again we were back to square one.

We asked the neurosurgeon & PM specialist to recommend a neurologist for us. And we started seeing our 4th neurologist. He diagnosed it as a chronic headache. And had us try a few other drugs. At this point, I also started researching headaches to see what I could find. I found a couple of different drugs (indomethicin being one) that we had not tried & so the doctor let us try them. Still nothing seemed to work. And there were no other headache drugs to try. So after about 4 months, he also said there was nothing he could do, we were going to have to just live with the headache.

Desperate for an answer, we went to the library to see what we could find. I knew that there had to be a why for the pain. And until we knew the why, we were not going to be able to treat the pain effectively. The past 29 months had taught us that much. And that was where I found the miracle that changed our lives.

After 4 neurologists, 3 specialists, countless tests, ER visits, doctors appointments and even more countless drugs I found the why. The "why" was that the C1 vertebrae was at a 45 degree angle. Remember when I said that the neurosurgeon did not fix ugly. Well, this was the ugly. The "ugly" was the cause of the pain. We spent 2 1/2 years treating a headache. And it wasn't a headache at all. The pain was actually referred pain from the vertebrae being off & rubbing nerves the wrong way. The vertebrae being off was what caused the neck to lock down. That was why the physical therapy helped, the vertebrae would slip back into place. And that is why the nerve blocks worked, they deadened the nerve that was being rubbed.

And once we found the why, we were able to quickly improve the pain. Within 3 months Ben was able to function without worrying about the pain. And now 6 months later, we rarely have a time where the pain rules our life. Let alone the days & weeks that it used to. I can't even remember the last time the pain caused him to need drugs or a nap or caused us to miss out on something.

So yes, finding that book & find Dr. James 6 months ago really was a miracle. Because without it we would still be living our life in limbo trying to get rid of the headache. Now we are able to focus on the future. And once the collateral damage the pain caused is fixed in our life, the headache will only be a bad memory.


woman at the well said...

Congratulations on hanging in there and continuing to look for solutions! (Ellen's mom, Paula, the lurker.) Sometimes we just have to force the docs to solve the problem.

ellen said...

I am so happy to hear all this. I know how hard it was for both of you while he struggled with the headaches. Yeah, for you both. I am most proud that you never quit and kept looking for the "why".