I was diagnosed with a Posterior Fossa Arachnoid Cyst in early August after 2 years of being misdiagnosed with numerous times with everything from anxiety to GERD. I would have "episodes" of arm numbness, dizziness, vertgo, nausea and blackouts. I went to ER once after blacking out while driving with my two toddlers and they discharged me saying I was under stress. So FINALLY getting a diagnosis relieved me to a point. I met with a neurosurgeon that said he would put a shunt to relieve some of the pressur, no questions asked.I was relieved to hear that he believed that my symptoms were related to the cyst. I was desperate, my symtpoms were getting worse and were almost constant, I was so scared. I cancelled my second opinion and scheduled surgery. Less than 3 weeks after my diagnosis, I was having surgery. I became sick after the surgery and was violently vomiting and dislodged my first shunt, 2 days later I went in for another one. Since then I have been battling low pressure headaches, still have nausea and am extremely weak. It has been 6 weeks since my surgery. The size of the cyst has went down a little, but some of my symptoms remain, I battle from constant nausea despite medications and continue to lose weight (30lbs). My surgeon said the size may not go down any further, but the pressure will change. I feel as if I did not educate myself well enough before surgery and was not sure what to expect. I was suppose to go back to work next week. I am lucky to be able to ride in a car and the other day was the first time I walked into a store in 8 weeks. I couldn't handle it. I am discouraged because I can't care for my two little girls, drive or work at this point. My husband and family are very supportive though. I feel like I will never get better or function even close to what I used to. My surgeon and I are giving it a few more weeks and then beig referred to Mayo in Rochester. Has anyone heard of good things from there? I do have all of my records and am also prepared to send them to Barrow's or Skull Base Institute as well. Although they are very far away. I am not sure if they can do anything more for me. This site has been my sanity over the past 2 months. It comforting to hear other people in a somewhat similar situation. I just thought I would be further along in 6 weeks. Maybe I am expecting too much????
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I was diagnosed with a Posterior Fossa Arachnoid Cyst in early August after 2 years of being misdiagnosed with numerous times with everything from anxiety to GERD. I would have "episodes" of arm numbness, dizziness, vertgo, nausea and blackouts. I went to ER once after blacking out while driving with my two toddlers and they discharged me saying I was under stress. So FINALLY getting a diagnosis relieved me to a point. I met with a neurosurgeon that said he would put a shunt to relieve some of the pressur, no questions asked.I was relieved to hear that he believed that my symptoms were related to the cyst. I was desperate, my symtpoms were getting worse and were almost constant, I was so scared. I cancelled my second opinion and scheduled surgery. Less than 3 weeks after my diagnosis, I was having surgery. I became sick after the surgery and was violently vomiting and dislodged my first shunt, 2 days later I went in for another one. Since then I have been battling low pressure headaches, still have nausea and am extremely weak. It has been 6 weeks since my surgery. The size of the cyst has went down a little, but some of my symptoms remain, I battle from constant nausea despite medications and continue to lose weight (30lbs). My surgeon said the size may not go down any further, but the pressure will change. I feel as if I did not educate myself well enough before surgery and was not sure what to expect. I was suppose to go back to work next week. I am lucky to be able to ride in a car and the other day was the first time I walked into a store in 8 weeks. I couldn't handle it. I am discouraged because I can't care for my two little girls, drive or work at this point. My husband and family are very supportive though. I feel like I will never get better or function even close to what I used to. My surgeon and I are giving it a few more weeks and then beig referred to Mayo in Rochester. Has anyone heard of good things from there? I do have all of my records and am also prepared to send them to Barrow's or Skull Base Institute as well. Although they are very far away. I am not sure if they can do anything more for me. This site has been my sanity over the past 2 months. It comforting to hear other people in a somewhat similar situation. I just thought I would be further along in 6 weeks. Maybe I am expecting too much????
October 9, 2011 - 6:34pmThis Comment
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