After suffering with ER visits and NS that knew nothing from June 2015-september 2015 I found my saving grace. But between September and December the meds (tegretol and I cant remember the other) were giving such side effects I couldn't function/work so I asked for the surgery because i was at 17 pills a day for the pain. So 12/10/15 I went in for the MVD. Sleeping was really tough and I felt so much pressure on the left side of my head I can only explain it as if you’re getting your head squeezed in a vice and even that is putting it lightly. I would literally hold my head with my hand to lift it up and down because my head felt so heavy my neck felt too weak to support it. I was discharged a couple days later.
On the 14th I woke up I was having trouble breathing, and when I say trouble I mean that I could barely catch my breath and they were too and far between. My aunt came downstairs and kept an eye on me while I waited for my mom to get home and take me to the ER.
They think I was throwing a fever because of how clammy I was, CT and MRI’s all came back fine so they sent me home and I followed up with my NS the next day. He was concerned but nothing was conclusive and obviously the procedure will do things to your body that are normal. The next week was really tough to get through, pain meds were my friend and sleep was an ally. But the head pressure would not go away. Again, how am I supposed to know what is normal for something like this!
6 days later on the night of the 20th my head was worse than ever so I went to lie down. Around 8 I awake with my head feeling “depressurized” but something didn’t feel right. I sat up and there was a clear fluid mixed with blood all over my head, body, pillows and sheets. I yelled for my mom and we decided to go to the ER. I held a cloth to my head because this fluid was just pouring out of the bottom of my incision. Before I could leave the house I knew I needed help so my cousin upstairs helped me walk outside. I made it to the driveway and collapsed to the ground in his arms. I don’t know how long I was out but when I woke up there was an ambulance coming up the road and off I went to the ER. Upon reaching the ER I started to kind of level out but was exhausted beyond exhausted. They started fluids and eventually I went for a CT but they said nothing was showing on the scan. Meanwhile, my mother and the ER doctors were conversing with my NS but he could only do so much over the phone. I was discharged and went home to lie down again because the leaking had stopped. That next morning I went to my NS for my regular scheduled appointment to get the stitches out as it had been 10 days since surgery. At this point I still didn’t know what had come out of my head the previous night. He started to take out the stitches and he noticed more fluid coming out and that’s when my heart sank and he said it was cerebral spinal fluid of CSF. He said I would need some stitched put back in and I would have to wait for his assistant to get there. I had 3 stitched put back in and my NS said that is the leak didn’t stop we would have to talk surgery on the following Monday. I crossed my fingers and prayed because I didn’t want surgery again.
Now Christmas was approaching and I still was not myself. The morning of Christmas Eve I awoke to fluid all over me again. I knew this wasn’t good and called my NS. He told me to go meet up with his assistant because he was in surgery. I made it to and David came to see me. At this point the cloth was covered, my incision was raw and I was very upset. He said he would call my NS and be right back. I went to the hospital expecting a couple stitches but when he came back in he said that after their discussion that I needed to forgo my holiday plans and go into surgery that morning because the sugar in the CSF is a Petri dish for bacteria and I was running a risk of meningitis or other infections that could kill me with it being by the brain and spine.
Crying is an understatement because I was scared, upset, worried and was not expecting this. They wanted me in surgery so fast that they almost used an ambulance to get me to the other hospital quickly. \\I was in surgery for another 3-4 hours. They decided to change the anesthesia to the iv instead of the mask and give me nausea meds out of the gate because he thought that when I was getting sick in the ICU the first time it forced fluid between my skull and the durra. Also heavy duty antibiotics because he thought a small infection was starting by the time he got in there. Every 2 hours I was givin IV antibiotics and I had the leg cuffs on again which made it difficult to sleep.
It was amazing the difference form the first surgery where I pretty much couldn’t function. Second time, Christmas morning let me remind you, I was feeling amazing and my mother was shocked when she walked in and I was sitting up in bed like nothing happened. My doctor had said I was part of a 2% that could have developed a CSF leak. Their quickness literally saved my life because infection could have killed me and quickly. I spent 2 nights in the hospital and went home on the 26th and this time a was feeling good; I went home on antibiotics and life was good considering I had my head opened up again. I was still pain free at this point and I felt better physically. I was on antibiotics and follow-ups with my NS. I saw him on the 29th and that was my last day on the antibiotics. By the 2nd of the new year I wasn’t feeling right again, almost like I had the flu, throat and all. I went to my PCP on the 4th after trying over the counter meds and she was concerned because I was throwing a fever along with all the symptoms so they called my NS and they scheduled a CT with contrast for the 13th, meanwhile it was a waiting game. After the CT I went over to my NS's office and he said it was a slim, once again 2% chance that I could be having a reaction to the medical Teflon; that my body was considering it a foreign object and the problems up to this point were masking it. He put me on a steroid called dexamethsone 2mg 3x’s a day. He said if this showed any improvement it would prove a diagnosis of rejection.
Within a couple hours I was feeling more alert again and like I wasn’t a walking zombie. I have been on the meds for 8 days and although it has helped with some things they make me really hungry, swollen and irritable but they are steroids to force my body to accept the Teflon so I have no choice. The pain has started to come back in my left cheek and around the left ear so when I see my NS on the 25th I’m expecting to go back on tegretol again.
As of today I would say I would do this surgery again because at least I have gotten some life back and I can return to work next week even if it is light duty. Physically I am still tired and I get lightheaded every now and again, sore, weak and irritable but I say it’s because of the medication. The incision is healing well even though there is a lot of pain/pressure on it at times but nothing I can’t handle with my ice pack. My throat still hurts from surgery and my chest feels heavy but once again nothing compared to before surgery.
All I can say is to each their own. I was taking so many pills a day that caused me to miss work, life, family and friends. The pain was unbearable and at that point I was not living just existing. Some people still think I’m crazy for going to aggressive against this disease but Trigeminal Neuralgia takes your life from you and leaves nothing but a shell behind. For me it was an easy decision because I am too young to basically stop living. This whole experience was scary from the start, risks were great and I had a rough time and still am in certain ways but being able to walk outside and take the sun upon my face and realize I get to live again makes it all worth it.
The pain is so intense right now I don't know where to turn and I know this is a long story but I really need help....please someone help me!!!!!!!!!