![\"\"](\"https:\/\/www.neffmusic.com\/blog\/wp-content\/uploads\/2020\/12\/ToxicEpidural.jpg\")
<\/p>\nAfter the Proton Beam Radiation treatment I quickly jumped back into things. \u00a0It was about a month later, \u00a0that I was on a gig playing my sax when I got this excruciating pain in my jaw. \u00a0 \u00a0I had to stop playing my solo and I just held my jaw for a second and then it went away. \u00a0It happened a few more times that night and would last a few seconds and then go away. The next day it happened some more and I noticed that my tongue was numb and tingling. Sharp face pains and a numb tongue make it difficult to play the saxophone in case any of you are wondering.<\/p>\n
My wife and I headed back to the Proton Beam doctor to talk about these new symptoms. \u00a0He listened intently and responded that he thought the radiation treatment was affecting my cranial nerves. \u00a0Now if you have read “Part 10” of this story, you will remember that this was my one and only question that I had asked this doctor.\u00a0 “Could this radiation affect my cranial nerves?”\u00a0 Remember that? \u00a0 \u00a0I was a bit bewildered by his analysis and reminded him that he had confidently told me that this would not happen. \u00a0He replied that in a small amount of cases it can happen (You would think he would have mentioned this before when he told me it never affects the cranial nerves!). \u00a0It was at this time that I started to believe that if a doctor told me that the prognosis was 99% good but there was a 1% chance it would be bad then I would fall into that 1%. I didn’t really have a strong faith in the percentages by this point.\u00a0 In my mind, if the bad thing had a greater than 0% chance of happening that was enough to include me.<\/p>\n
The doctor prescribed a drug called Neurontin for me to help me with the face and jaw pain. \u00a0Within a few days of starting this new drug, \u00a0I started getting a rash on my chest and he took me off of that drug and decided to give me a drug called Tegretol instead. \u00a0 I started taking Tegretol daily and it really seemed to help.\u00a0 I wasn’t having the face pain as much and my face wasn’t tingling as much.<\/p>\n
About three weeks into taking Tegretol, I came out of the shower one morning and my wife exclaimed “Holy Cow, Steve!\u00a0 Why is your chest so red?” \u00a0I said I didn’t know why but it had been getting red over the past few days. \u00a0By this point, my whole torso had a sunburned look to it. \u00a0My wife, being a nurse, correctly diagnosed that I was having an allergic reaction to the Tegretol I was taking and told me I should call my doctor. \u00a0I called the doctor and he said to stop taking the Tegretol ASAP. \u00a0My wife headed out to work the overnight shift and I was home with my daughter who was sleeping.\u00a0 I knew nothing about allergic reactions or what they can entail so I got on the computer and did a search for “Tegretol” and “allergic reaction”. \u00a0 I found a whole bunch of interesting reading on the subject at first but the more I read the more alarmed I got.<\/p>\n
Now the internet is an incredible tool. \u00a0It can give you the right information to make the right decision or it can give you so much messed up information that you are scared out of your mind. \u00a0Then there are those times that it can give you all the right information, scare you out of your mind and then lead you to the right decision. \u00a0This was one of those latter times. \u00a0As I was searching around the internet, \u00a0I kept gravitating to the worst case stories. \u00a0By this point in my path in life, I had come to assume I had the worst case scenario so that is what I was drawn to.<\/p>\n
<\/p>\n
This is a benign banner in place of any graphic photos I could have posted for this disease.\u00a0 They are too disturbing to post but if you dare and can do a google search for the words above………<\/strong><\/p>\n The two terms that kept coming up on the internet when searching for “Tegretol” and “allergic reaction” were Toxic Epidermal Necrolysis (TEN) and Stevens-Johnson Syndrome (SJS). \u00a0 It might be just me, \u00a0but having the words “toxic” and “necrolysis” (necro being the greek prefix for death) in the title of a condition is not a good sign! \u00a0It basically can be translated “poisonous skin death” in everyday english. \u00a0 Basically, I learned that some people that have allergic reactions to Tegretol get this Toxic Epidermal Necrolysis.<\/p>\n Toxic Epidermal Necrolysis: The condition causes your skin to redden and peel similar to if you get a very very bad sunburn. \u00a0This happens all over your body. \u00a0Your skin then can separate from the lower layer and large sheets of skin slide off the entire body at pressure points (they call it sloughing) similar to a 3rd degree burn all over your body. Nails and eyebrows can fall off also. \u00a0People with this condition go sterile, lose their eyesight, have multi-organ failure, pneumonia, pulmonary edema, and die (mortality may reach 50%<\/strong>)<\/em><\/p>\n If you want the full list of possible side effects you can go to this site<\/a> and read about them. (Don’t do it on a full stomach) You can also do a google search for “Toxic Epidermal Necrolysis” and click on images to see the devastating affects this can have on a person.<\/p>\n As you can imagine, I was pretty anxious that this was what I had and I had a hard time sleeping that night.\u00a0 I started feeling hot and sick like I had a fever and when I took my temperature it was 102.\u00a0 I called my wife at work because my heart was racing like crazy and I now had a high temperature. \u00a0 She came home from work and she thought we should go to MGH Emergency room immediately because I was looking pretty rough.\u00a0 My 8 month pregnant wife and I woke up our 18 month old daughter and headed down to MGH at 4AM as a family.\u00a0 \u00a0Fun family event!<\/p>\n When we arrived at the MGH Emergency Room. \u00a0After waiting forever, we were finally seen and after some tests and blood work the doctor informed us that I was just having an allergic reaction to Tegretol. \u00a0“Just go home and take some Benedryl and you should be fine” he told me.<\/p>\n Now, this is the point where I used my vast knowledge of medicine from the internet to impress the young doctor. \u00a0“Could I possibly have Toxic Epidermal Necrolysis or Stevens-Johnson Syndrome?” I asked with my best “I know what I’m talking about” face. \u00a0He looked at me with a look of admiration that you would only get from a peer who considers you his intellectual equal.<\/p>\n There was a brief moment where we locked eyes and he knew I would be a worthy adversary……….”Where did you hear about that?” he asked. “The internet” I responded proudly. \u00a0At 4 AM this young doctor looked quite tired. \u00a0He did his best to offer a polite smile, sighed, and told me that the chances were very low that I would have TENs or SJ Syndrome. He told me that I should go home, take Benedryl and rest (perhaps implying that I stay off the internet). \u00a0If by chance the fever goes up again, then he suggested I come back the next day.\u00a0 When I got home, I took some Benadryl and went to bed.\u00a0 Everything was going to be OK I thought as I drifted off to sleep.<\/p>\n I woke up later that day sweating like crazy. \u00a0My sheets were soaked. I got up to take my temperature and it was close to 103. As I looked in the mirror, I noticed my face was now beat red and everything was looking a bit swollen and puffy looking. \u00a0I woke my wife up who had also been up all night and we went back to the hospital.<\/p>\n This time a good friend of mine also came with us. \u00a0Now I have to say that this trip to the hospital was quite different than the 4AM trip we had made earlier. \u00a0The place was hoppin’. \u00a0There were doctors and nurses every where and we were seen pretty quickly. \u00a0They didn’t play around this time. \u00a0I mentioned my research into Toxic Epidermal Necrolysis straight off to the first doctor we met. \u00a0It helped that my knowledgeable nurse wife was there who knew what she was talking about as opposed to me who had surfed the internet and was mis-pronouncing words \u00a0like crazy………(I think I was telling \u00a0the staff I thought I had Toxic Thermal Hydrolysis………..). \u00a0I remember getting a whole bunch of tests but in the end they came back and said that yes, it looked like I had TENs (Toxic Epidermal Necrolysis). \u00a0What were the chances?<\/p>\n A bunch of doctors came in and talked to me but basically they all said the same thing. \u00a0All they could do was put an IV in, hydrate me, and wait to see how far this would progress. I mistakenly thought that just because I stopped the drug I would immediately get better but they told me that wasn’t the case. Once the symptoms started, \u00a0all they could do was wait and see where it went and give me pain medication to help. \u00a0Not very reassuring nor comforting…………<\/p>\n I stayed in the hospital and sent my wife home. \u00a0 She needed to pick up my one year old daughter and she needed sleep herself. \u00a0I wasn’t sure where this was all going but to be honest I was reaching the end of my rope here. \u00a0I started to have a range of feelings well up in me like anger, sadness and an incredible frustration. I felt like I was really starting to lose it!<\/p>\n I had mentioned earlier that I had a strong faith in God. \u00a0Well at this particular moment, \u00a0I felt like I had a lot of anger boiling up inside of me. \u00a0Brain Tumor…….OK. \u00a0 Meningitis…….OK. Cancer……….Well, I’m not happy about it but OK. Return of brain tumor…………….OK AREADY!! \u00a0Side affects from radiation……..GOSH DARNIT OOOOOOOKAY!!!\u00a0 Now, Toxic Epidermal Necrolysis that could end with my skin sliding off my body, organ failure and to top it all off death! \u00a0 I \u00a0GIVE UP! \u00a0 AGHHHHHH!!!!\u00a0 \u00a0I went to bed that night silently screaming! \u00a0You have to wait until Part 12<\/a>. for the next part…………Sorry!<\/p>\n","protected":false},"excerpt":{"rendered":" After the Proton Beam Radiation treatment I quickly jumped back into things. \u00a0It was about a month later, \u00a0that I was on a gig playing my sax when I got this excruciating pain in my jaw. \u00a0 \u00a0I had to stop playing my solo and I just held my jaw for a second and then […]<\/p>\n","protected":false},"author":63,"featured_media":101896,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_genesis_hide_title":false,"_genesis_hide_breadcrumbs":false,"_genesis_hide_singular_image":false,"_genesis_hide_footer_widgets":false,"_genesis_custom_body_class":"","_genesis_custom_post_class":"","_genesis_layout":"","footnotes":""},"categories":[226],"tags":[224,254,256,255,257],"class_list":{"0":"post-850","1":"post","2":"type-post","3":"status-publish","4":"format-standard","5":"has-post-thumbnail","7":"category-brain-tumor-story","8":"tag-brain-tumor","9":"tag-proton-beam","10":"tag-steven-johnson-syndrom","11":"tag-tegretol","12":"tag-toxic-epidermal-necrolysis","13":"entry"},"_links":{"self":[{"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/posts\/850","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/users\/63"}],"replies":[{"embeddable":true,"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/comments?post=850"}],"version-history":[{"count":0,"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/posts\/850\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/media\/101896"}],"wp:attachment":[{"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/media?parent=850"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/categories?post=850"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.neffmusic.com\/blog\/wp-json\/wp\/v2\/tags?post=850"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}