As I mentioned in my last post I have been having terrible headaches the past several months. They are different than the headaches I had before my brain and neck/spine surgeries. They are on the top and feel like the top of my head is going to pop off! I did not have any headaches for about 2.5 years after my decompression revision and fusion, where they made more room for the back of my brain and fused my skull to the top two vertebrae in my neck. I am extremely luck and feel very blessed that I did not have any headaches because this is simply not the experience of many patients! That being said, these headaches kind of blindsided me because I had gone for so long without them that I was caught off guard by them!
After a visit with my primary care physician (PCP) we decided to order the CINE MRI, as I discussed previously, which is different than a traditional MRI because it looks at the flow of the fluid that surrounds your brain and spinal cord (cerebral spinal fluid-csf). My PCP thought that it appeared that my CSF flow was blocked by what appeared to be scar tissue from my previous surgeries. We sent the disk off to my neurosurgeon in New York so that he could take a look at it. He does not think that scar tissue build up is the issue and feels that there is something else going on.
In order to find out what more is going on he wanted to do a lumbar puncture. A lumbar puncture is exactly what it sounds like: a needle is used to puncture your lumbar (lower back) spine. They are able to do lots of labs with test, but for me they wanted to see what the pressures of my CSF were. Your CSF pressure is the same throughout your brain and spinal cord, so they can measure the pressures through this lumbar puncture. My pressure was 16, which is borderline high. It not super elevated, but it is higher than you would expect to see.
Since my pressures were elevated somewhat we decided to start a medication to reduce the intracranial pressure. This medication is called Diamox and must be started very slowly. After building up to the full dosage of this medication (250 mg 3x a day) it has been helping significantly with my headaches! This is great news.... but there is a side effect that has come with this medication (of course it couldn't be that easy!). I have been having horrible pins and needles in my hands and feet that have been occurring since I have gotten on this medication. This is an extremely painful sensation and I say it feels like little elves are shoving tiny needles into my hands and feet. The good news is that we do not think this symptom will continue after I discontinue the medication, but the bad news is that we think this side effect will continue for as long as I take the Diamox. Of course we must now decide what to do about this since this side effect is becoming intolerable.
It is looking like I am going to have to discontinue the medication, which of course is not ideal because it is helping my headaches so much! I have a Skype appointment with my neurosurgeon in New York tomorrow afternoon so hopefully we will get more information from him then! Please pray for us to get guidance and peace for whatever the next step may be.
