Back in 2006 I had some issues with nerve pain that was caused by a compressed disc in my back. I had an MRI and they also found a tumor on my pituitary gland. In October 2013 I had another MRI to see if it had changed. The tumor had dramatically increased in size and the doctors recommended that it be removed. I had the surgery on March 7. I had a lumbr drain for a brain fluid leak that kept me on my back for 6 days. I also had a terrible headache that they said was part of the healing process. Another issue was that my vision seemed to have changed, I was not seeing double but I was having a hard time focusing; however, they indicated that it would go back to normal and to not get a new prescription. (I did end up having to get new glasses as my eyes never did go back to the way they were before the surgery).
The headache did not go away and after two months I had a blood patch with the goal of sealing any CLF leak. one of the issues that I was experiencing was it felt that my brain would hit my forehead when I would bend over and after the procedure this “feeling” was no longer present. However the headache was still there. On a scale of 1 to 10 it would star off in the morning at a 3 and by the end of the day it would be as high as a 9. I would lay on my side in a fetal position with my hands on my head in pain. I had a second blood batch but it did not have any impact on my head.
I tried varies pain pills (extra strength Tylenol, Excedrin and Advil). None of them had any effect on the pain. I tried caffeine and no caffeine. I was passed on to a headache specialist So far I had been on the following medications (Nodol 40mg twice a day, Zonisamide 25mg working up to 3 in the morning, Isomethept-Dichloralp-Acetamin up to 5 in a 24 hours, Butal-Acetaminophen-Caffeine ) none of them have had any real impact on my headache. I also am doing physical therapy and the best thing I got out of that was using a tennis ball on the back of my head to tear apart the muscles. I am not sure why this helps, is it the muscles that need to be worked, trading one pain for another, or just the action of moving my head back and forth like a baby’s crib. I can lay down and roll my head over the tennis ball for several hours at a time before I finally am able to get some rest. I also went in for a sleep test and I am now using a CPAP. I do feel that there is a real issues with my sleep (a lot of it I feel is due to the fact that I am over weight) but I also feel that these programs are set up to get as much money from the insurance companies as possible. $2,000 for the machine is incredible. But I have started the process and up to this point my body is still trying to get used to it. I have started to exercise (I use an elliptical for 15 minutes twice a day) I have lost some weight but it has not helped my headache I also cut out all sugar I also just drink water, no juice, soda, coffee, tea or anything else I have never been a drinker and I have never smoked
When I got home my goal was to get back to work. My job was very stressful and getting more so each year. I had the same job for the last 20 years in the financial industry and with all the new regulations it was no longer as enjoyable as it had once been. However after three months and my recovery was not going well and I did not feel that with the medical issues that I was still dealing with that I would be able to continue with the level of stress so I took an early retirement.
When I first got home I was only sleeping about 3 hours a night because of the pain once I started to use the tennis ball I was able to increase that to 5 to 6 hours Now that I have the CPAP I am back down to 4 – 5 at thie point I think that as I get used to the new process that it will go back up
The surgery has also changed a lot of the hormones that are monitored and impacted by the pituitary gland, this alone has been a real challenge. I had them tested before the surgery and than after. Although they are still all within the “normal” level they clearly changed. Also my vision never came back to what it was before the surgery. I ended up having to get new glasses. My near vision had changed (was better) so much that my eye doctor was concerned that I could have diabetes. But the tests showed that I was now at the low end for my sugar level.
I have a headache every day, not just a few times a month, everyday. Before the surgery I rarely would have a headache. It usually starts off at a 3 and by the end of the day it increases to a 7 or 8 by the end of the day. This is the scale that I am using:
1. Minimal. The pain is hardly noticeable
2. Mild. Low level of pain. Aware of my pain only when I think about it.
3. Uncomfortable. Pain bothers me but I can ignore it most of the time
4. Moderate I am constantly aware of my pain but I can continue most daily activities.
5. Distracting. I think about my pain most of the time. I cannot do some of the activities I need to do each day.
6. Distressing. I think about my pain all of the time. I give up many activities because of my pain.
7. Unmanageable. I am in pain all of the time. It keeps me from doing most activities.
8. Intense. My pain is so severe that it is hard to think of anything else. Talking and listening are difficult.
9. Severe. My pain is all I can think about. I can barely talk or move because of my pain.
10. Unable to move. I am in bed & cannot move due to my pain
I have not hit a 10 and I am never as low as a 2. Most of the time it is between a 4 and a 7 depending on the time of day. There has not been a single day or even a single hour that my head is not in pain, it is all a matter of degrees.
I feel that my current doctor, the headache specialist, feels that the pain has nothing to do with the surgery and that it is all due to “tension”. The fact that it started right after my surgery and that I did have a history of headaches does not seem to factor into her conclusion. I have only had three appointments with her but I feel that she does not believe me.
I just want the pain to go away. I also would like to get off all of the medications, it feels like the side effects might end up being more of an issues then ant benefit that I am currently getting from using them.