So then what? – #3

My first visit to the Neurologist was really scary. I had done alot of reading prior to the visit so I would know what they were talking about. Mark (wonderful husband) came to the visit with me prepared for the worst. I brought a list of the drugs I had researched and lots of MS related questions. I met the P.A. first who did a quick neuro test and then Dr. Alderson, The neurogist came in for about three minutes and told me that it didn’t look like I had MS. No MS? So then what? Something worse? Maybe nothing, the demylination could be from headaches or mini strokes. They recommended I do some tests to rule out MS completely.

My first test was another MRI but this time of the spine and chest. The results showed no MS! I was thrilled. Next was an Ultrasound of the heart to make sure there wasn’t a hole where there shouldn’t be. No hole! Then it was nerve testing of the eyes and ears. This was the easiest of all. I just stared at a monitor and watched and listened to beeps. I passed that test with flying colors. My hopes were up and I stoped reading about MS. Of course I don’t have MS! With my tests reviewed, the PA at Dr. Alderson’s office said that there was nothing to worry about. I asked about a spinal tap. No need, just wait and see. I am so bad at wait and see. I don’t sleep when I wait and see. The spinal tap was scheduled for later that week just before the weekend of July 4th.

The spinal tap was a piece of cake once I stopped thinking about that big needle sucking fluid out of my spine. The spinal tap was NOTHING compared to the blood patch (read on). With permission from the spinal fluid sucker, I took a left over Valium from when I was trying to “reset my balance sensors”. My mom came with me for the procedure and spent the day with me. The orders were to stay flat on my back for 24 hours after the spinal tap. Moving around could cause a “spinal headache”. My mom knew better than to leave me alone. I probably acted annoyed but I was so glad she was there. She always comes through when I need her the most and that day, I needed her.

No results Thursday or Friday and now then came the 4th of July weekend. I had company visiting from NH and was excited to see and them to have a distraction. I was ready to have fun. Saturday morning we all went to the Farmer’s market. I did not feel good. I had a really bad headache. A headache so bad that when my friend and I stopped at the Grocery store on the way home, I couldn’t get out of the car. I had to ask my guest to do my shopping. I was horrified! I went home and layed down for a bit and felt better. That night we went to a movie and after a good nights sleep, I felt better. Sunday morning we headed up the canyon for a big brunch. By the time we were half way there, I had my head in my lap. What was going on? I sat through brunch but could not eat or talk or barely open my eyes. Mark brought me home and then went back to entertain. I slept all afternoon and then decided to call the neurologist Sunday afternoon. The on call doctor said, “Sounds like a spinal headache, you need a blood patch.” We left our guests to fend for themselves and went to the ER. (leave it me to have this problem become intolerable on a Sunday afternoon instead of during regular business hours.)

Spinal headaches are caused by leakage of spinal fluid through a puncture hole in the membrane that surrounds the spinal cord. This leakage decreases the pressure exerted by the spinal fluid on the brain and spinal cord, which leads to a headache. A blood patch stops the leakage by injecting a small amount of your blood into the space over the hole in the dura. This is known as an epidural blood patch. The injected blood forms a clot that seals the puncture hole, restoring normal pressure in the spinal fluid and relieving your headache. Believe me when I say, that the procedure is way worse than it sounds. The only good news – the headache was gone almost immediately. The bad news – it was almost time for the guests to go and with all this, I think they were ready!


One response to “So then what? – #3

  1. i totally agree! lumbar puncture = no problem. spinal headaches and blood patch = indescribably horrible. as you say, the only good news is that the blood patch works so fast.

    with my spinal headaches, i would literally throw up every time i sat upright or stood for longer than 20 or 30 minutes. and it wasn’t just throwing up, i felt like i was going to die of a headache/nausea hurricane. like you, i ended up at the ER, and spent much of the day there before they finally agreed that i needed a blood patch. i was never so happy to see a giant needle coming at me in my life.

    the injustice of it was that i didn’t end up having any oligioclonial bands or whatever they are called. which was great news at the time – i was told i probably didn’t have MS. turns out, i do have MS and the diagnosis of my MS was delayed two years because the results of my LP were normal. as you probably know, most, but not ALL people with MS have abnormal lumbar puncture results.


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