I would like to hear from anyone with thoracic arachnoid cyst surgery and how they are now doing.
About 3 years ago I was admitted to the hospital for re-occurring symptoms that took me to the hospital that day.
For about 8-9 years I had gone from dr. to dr. trying to find out what was wrong with me. My symptoms were numerous; muscle and joint aches so that just to get out of bed required taking a hot shower to thaw out my body. Debilitating headaches occurring every morning that would affect my brain causing what I would call "brain fog" and confusion. My vision would be affected by sunlight. I would have pain in my back, legs (similar to a band around my body), pain under my right rib area which would cause my right leg to hurt causing a limp when I walked. I noticed I had also started tripping quite a bit as well. I would get jaw pain, temporal pain, one eye would be swollen and go away. I originally thought I might have MS as these symptoms fluctuated every few weeks/months. I was also tested for Lupus, MS, tick disease, Bells Palsy and other autoimmune diseases with no results. My new symptom that took me to the hospital that day had been getting worse, it was the pain under my right rib area but with terrible pain spasms that would harden that area and cause me to thrash out like a fish out of water. Thank goodness this happened when the doctor came in to see me. I was given pain medication and admitted to have a battery of tests for a week which included numerous MRI's of the brain, spine, upper GI, Cat-Scans and colonoscopies galore. I lived on pain meds, Jello and water for next the week. Finally, a neurologist came in and told me what they had found but wanted to do more tests. He had me walk for him and asked me how long I'd had my limp. This was caused by compression to the spinal cord and getting worse. By now I was having numbness from my toes to the knees, my toes were curling upwards. My doctor explained I would need surgery and informed me he would like to do it very soon. I would have 2 laminectomies, one partial to remove the cyst. I had never been sick in my life and have never been in so much pain after surgery, just to breathe it hurt. A shunt was inserted for drainage in my back and removed days before my discharge I was expected to return for a follow-up appointment when I noticed I couldn't stand, I had numbness in the legs. I called my doctor's office and told him my symptoms and he said to go to his office ASAP! After examining me he told me to go to the hospital ER and someone was waiting to admit me I was going to have surgery again. I woke up and my doctor said I had been bleeding internally which caused some damage to nerves in the spine (spinal cord injury). After 12 weeks of Physical Therapy I was still in terrible pain and if the pain meds did not help I would have to go to ER so I could get pain injections for break-through pain it was very, very painful as the spinal cord was inflamed and nothing could be done, except for treating it with pain meds. We didn't know after surgery (2nd) as I was healing like a pretzel, connected from the inside out because as I was in so much pain my doctors wanted to try to insert a spinal cord stimulator for the pain but it couldn't be done as this area was closed off and healed and this was now not an option. Now the only thing I could do was stand maybe 5 minutes if that before the pain began so I had to stay in bed for NINE months. I did not want to live this way. I was using a walker just to get around. Then I started with the jerking movements (clonus), throwing up.
Again more MRI's to find why this was happening. The injury to the nerves were causing this to happen and was prescribed seizure medication to tone these down. But the pain continued as usual with no let up. I took vicodin, oxycotin, Fentyal patch, hydrocodone, Gabapetin for neuropathy but mostly Dilaudid helped immensely, Baclofin for the spasms which I still get to this day after three years. Now I am taking Kadian (Opoid) a very old drug but works as I now I use it for chronic pain probably for forever. Remember every surgery can have complications. Do through research, get second opinions and always ask your dr. plenty of questions and what options you have. As I mentioned before I did not want to live this way. I started going to a therapy heated pool where I could gently exercise and walk in water with floating devices to help regain some balance and it has helped.
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