On January 31, 2013, the neurologist did a spinal tap and blood work to test for MS. While he was there, he decided to take some extra and test my pressure and everything. After almost 2 weeks, I found out that I didn't have MS, but my spinal fluid pressure was high. The neurologist called my neurosurgeon, and I got an appointment with him quick. After talking, he told me that I had Obstructive Hydrocephalus and that he and the neurologist thought the best route to take would be to do a temporary drain to see if it helped improve my symptoms. If it did, they were going to insert a shunt from the end of my spinal cord around to my abdomen.
On February 21, 2013, I went in for the procedure. It was quick and pretty much pain free. They had me lay flat and did a lumbar puncture and drained a small amount of fluid. Afterwards, I had to lay flat for so long and then they raised my bed, so many degrees, every so often. I was then able to go home with only the restriction of resting and not doing any vigorous activity for two days. The day after the drain, I started feeling relief. It continued to get better with pretty much complete relief of the pressure issues, headache, dizziness, double vision, etc. I was so happy!!! The symptoms remained gone for 9 days. Something had occurred and my body took over. My head and everything was under so much pressure. Almost immediately, all of the symptoms had returned. I was crushed, but at the same time felt hopeful that the shunt would be put in and I would at least be relieved of some of my many issues. I got a call from the surgeon's nurse telling me that I needed a follow-up and to get an eye exam with test to check the pressure in a certain part of my eye. I got the eye exam done and it came back normal.
On February 13, 2013, I had my appointment with the neurosurgeon. Let me tell you, that was waste of time. I went in very hopeful and walked out livid. It started ok. I told him how everything had gotten better until the issue I had and then everything came back worse. He explained to me that when he did the drain, my pressure was within normal range and that he only drained a small amount. I don't care what he said or thought, the test worked! I wasn't faking or imagining that it worked, IT WORKED! He told me that it was ultimately my decision on whether to do the shunt or not. I told him that I wanted it because I wanted to get rid or ease any symptoms I could. I wanted to be able to do more and live, even slightly, in less pain. He explained that I would have to go in every couple years to maintain the shunt and would have scars on my stomach. I explained to him that it didn't matter to me and that I already had scars and stretch marks from pregnancy. That is the least of my worries. He told us, "Let me go call your neurologist.". He wanted to consult with him. That was totally understandable to me. He made it seem like he would be right back. WRONG! Not even 2 minutes later, the receptionist came in and said, "You can go. We will call if we need to see you again." That was the wrong thing to say at that moment. My husband grabbed his stuff and told our son to come on. I walked out of the office saying how horrible the place was and that the surgeon was an ass.
The situation really hit an emotional spot in me. I went back in and told a woman behind the desk what happened. She told me to hold on and came back and said the surgeon would be out in a minute. He didn't come out. The receptionist that told us we could leave came out to talk to me. I told her how I thought that what happened wasn't right. I explained the previous problems I had with the nurse practitioner and how she had called me a junkie, among other things. I told her that I knew it wasn't her fault, but I had been treated badly too many times. Luckily, I have an appointment scheduled with my neurologist in about 10 days. I will be talking to him about all of this. If I don't hear anything before then, I will also be consulting him about a new neurosurgeon. I have been jerked around too long. I have had problems with the neurosurgeon's office since August 27th, 4 days after my decompression surgery and it is still continuing to this day.
Life is getting harder by the day. Doing even the smallest things are getting harder by the day. Functioning, being able to take care of my family, enjoying time with my family other than sitting around, everything is getting worse. The issues keep piling up. I'm having more and more pass outs and seizures. My legs don't want to function most of the time. My arms and especially my hands have become a huge issue since all of the symptoms returned. I am swelling, can't write or even color with my son for more than 5 minutes without being in excruciating pain. I am heading back to the walker and wheelchair, that I have tried so hard to stay away from. My pain management doctor is just as big of a pain as the surgeon is and the pain is out of control. I am up and down every night. The list just goes on and on. I have went from a person in their later 20's to someone who feels like they are at least in their 80's. I have had enough. I will go to however many doctors I have to until I get someone to finally do something. I cannot and will not continue this way.
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