My last 3 and 1/2 years
In May of 2009 I went to see a doctor about a leak that I had from my left nostril. I don't know how long I've had that leak because at first it kind of just feels like a runny nose. My doctor first treated it like allergies, but after about a week of treatment decided that I should have a cat-scan done to see where the leak originated from. Of course little did I know what was going to happen to me after this cat-scan and what they were going to find was going to change my life forever.
I end up having the cat-scan and on June 1st I get a call from my doctor telling me that she found why I have a leak. They found a tumor on my pituitary gland that has a tongue like thing that basically made a hole in my nose. It was cervical spinal fluid or CSF, that was leaking through my nose and my doctor because of my situation advised me to go to Morristown Memorial Hospital because no specialist was going to actually see me because I didn't have insurance and if they did it was going to cost me an arm and a leg. So I went to the hospital where they kept me for about 5 days and did a numerous amount of exams and a bunch of different doctors and specialists were looking into my case. I have never been poked so many times with needle in my life. I was being told that the tumor was in a place where it was going to be difficult to perform any type of surgery. They told me no one in Morristown Memorial felt comfortable in performing that surgery because of the complications behind it.
Now one of the issues with having a pituitary gland tumor was that I was told that there is a chance that I've had it a long time. I had extremely high levels of prolactin and low levels of testosterone and corisol. Now from what I'm being told the prolactin is something you find in pregnant women and that the levels of prolactin that I had was just way too much. Now I'm told it could be one of the reasons why I'm overweight. One other thing it could have done was make me produce milk but it never did. There's a chance that I would have never known I had a tumor if it didn't break a hole in my nose.
I started my treatment in June with Dr. Usiskin, who is an endocrinologist, and the idea was to shrink the tumor with medicine and after it had shrunk, surgery would be easier. But at the end of July, I was hospitalized again at Morristown Memorial and this time I had come down with bacterial meningitis. It was one of the complications that I was told could happen because I had a hole in my nose that leads right to my brain. It was one of the worst times of my life. It all started off in my bedroom where I was just watching tv and just all of a sudden I had this pounding headache and then about 10 minutes after this pounding headache I just start throwing up and not really able to stop. My mother and sister decide that they are taking me to the hospital but no more than 5 minutes in the car, I tell them to stop. I just couldn't stop throwing up and didn't want to do it in the car so they stop in the middle of the road so I can throw up. A police officer sees the car on the side of the road and stops to see what was going on and after seeing me decided to call an ambulance. The ambulance takes me to the hospital and while I'm there I have a pounding headache and still throwing up, they give me some medicine that only really helps me stop throwing up. While I'm still in the ER everything starts getting fuzzy and I actually don't remember much after that I actually lose about a day of my life because I literally become conscious 24 hours later. Now I never really lose consciousness but I wasn't all there. I was at the hospital for about a week and was let go with a picc line in my arm. A picc line is a peripherally inserted central catheter, it is a form of intravenous access that can be used for a prolonged period of time. I had to go back to the hospital everyday for about 2 weeks to get medicine through my picc line. Now a picc line in terms of how they put it into your arm through a big needle that hurts a lot was an awful experience that I never wanted to go through again in my life. Now the idea was to continue with the treatment of shrinking the tumor and this was just going to be considered a road block in my treatment. But literally 17 days after I had my picc line removed, I was hospitalized at Morristown Memorial again with bacterial meningitis. The chances of getting bacterial meningitis twice in less than a month are supposedly the same odds as winning the lottery. The second time in the hospital with bacterial meningitis was worse because I honestly felt that I was going to die. There was a time in the hospital that I had given up and was ready to just die.
The doctors this time around didn't give me much better news. I was basically told that if we have to take a serious approach at fixing my problem. I was told I would die because I could keep getting bacterial meningitis or something else bad if the hole in my nose continued to be there. But the complications in having the surgery to remove this tumor could actually result in my death. The tumor I was told was pressing on my optical nerves and the tumor had a vein going right through it so if they tried to remove it I could actually bleed out and die. Once again no one in Morristown Memorial wanted to do the surgery but they actually scheduled an appointment with what I was told was someone more specialized in treating someone with my situation who was located in New Brunswick. So a couple days after my release from the hospital I went to UMDNJ in New Brunswick to see a doctor in the Neurosurgery department. Throughout this whole thing everyone knows that I don't have insurance. I go in and see the doctor who looks at all the test results that I have brought him and he doesn't take a whole lot of time looking at it. And he starts interrogating me about why I have come to see him that day. And I tell him that I didn't schedule the appointment my doctors at Morristown Memorial while I was hospitalized told me that they were sending me to see a specialist that was better trained in my situation. I told him that they said he was the doctor who could save my life because I'm told that I could not get bacterial meningitis again, because if I did it would be really bad for my health. He basically tells me that he has no idea why they would send me there to see him. He sits there and tells me that he knows doctors at Morristown Memorial and that some of them are also qualified in taking care of my situation. He tells me that he doesn't feel comfortable in performing the surgery because of how complicated it looks. He literally says to me that even if I were to offer him one million dollars that he would still have to think about performing the surgery. He says that even for that amount that he would still say no. He tells me why would I come to see him without knowing who he was. Why would I come and not know who I was seeing and whether or not they were actually specialists in brain tumors. I respond that I'm listening to the recommendations of the doctors that I saw at the hospital who told me that I had to see someone that could help me because I could die if I was untreated. The next thing he says is, it's your life and that I'm a smart kid why I don't look at the internet and search for doctors who are the best of best specialists in this type of surgery. I told him if I can't trust the recommendations of the doctors who are treating me then why bother going to them. I told him my doctors told me to come here and that I could find some help here obviously they were wrong and I just left. I was just so appalled that a doctor would literally tell me that I should go Google my next doctor on my own and not listen to my doctors. This doctor did not help but basically just sat there bashing me and making me feel even worse. I remember leaving that hospital and crying because I truly felt that I was going to die. I had gone there with so much hope and was pretty much slapped across the face and was made to feel horrible.
I do feel that because of my uninsured status that some doctors are playing hot potato with my life. I'm just being passed on to the next doctor and letting him take care of the problem. And I wonder how many more people that might be in the same situation or maybe even worse than me just can't find the help they need. I feel just a little lucky because in my daily life I don't feel any pain, and I know there might be someone out there that might be in actual pain and can't find any help. But I won't lie that it does hurt that so many doctors knowing that I could and probably would die because of this tumor just don't care. They are more worried about me having insurance than about how many times I've been hospitalized with bacterial meningitis.
The story has a happy ending because I wouldn't stop fighting or believing and thanks to Dr. Usiskin because he found a surgeon, Dr. Zampella that would operate on me. He couldn't remove all of the tumor, he could only remove half because of the danger of removing all of it. The idea is to take brimocriptine to try and shrink the rest of the tumor and the idea is that I will be fine. I might need chemo but I am very hopeful that the medicine will help me. It looked like a happy ending after the surgery. I just needed to heal and I would be fine.
Sometime in late October of 2010, my left nostril started to leak again. I was shocked and couldn't believe that somehow the hole in my nose had come back. I know I should have rushed to see the doctor, but I was scared. I didn't know what was happening and just decided to wait. Well on December 5th I could no longer wait but it wasn't my choice. That day I was rushed to the hospital with headaches and vomiting. I had gotten bacterial meningitis again. Once again everything went fuzzy and I woke up hours later feeling a little bit better. When I woke up though I was surprised to see Dr. Zampella at the edge of my bed. He started asking what happened and made the decision that he would operate as soon as possible to close the hole in my nose and put a shunt in my head. A shunt is placed inside your head right above the brain. The purpose of the shunt is that it reduces the amount of cervical spinal fluid in your head which reduces the pressure it causes. The shunt is a little plastic tube that takes the CSF from your head and through a tube that goes all the way to your stomach were it deposits the CSF.
On December 20th, Dr. Zampella would put the shunt in me and Dr. Kanowitz who is an ENT, Ears Nose and Throat Doctor, would close the hole in my nose. Everything went well and after about 5 days after the operation they let me go home. At home once again I just had to rest and really not do anything that good cause pressure in my head. Sometime in January 2011, I had to go back to the hospital because I had bronchitis. I literally couldn't breathe. I also had a lot of coughing fits where I was coughing so hard that I would almost throw out my back. I was telling Dr. Kanowitz who was in taking care of the hole in my nose that I was sure if I was leaking or not. The issue was because of the bronchitis there was a lot of mucus so I didn't have a steady leak and most of the time it was mucus that was coming out. I don't know why but I actually had this bad feeling that I might be leaking and I was already told that if I was leaking that we would be going back to the operating table to close up the hole again. It was January 31st when I went to see Dr. Kanowitz and I was definitely leaking. I knew another operation was going to happen but couldn't believe that he actually told me be at the hospital tomorrow at 12 pm. I'm going to close the hole again. I was given less than 24 hours notice that I was going back to the operating table. February 1st went back to hospital and the doctor closed the hole.
I ended up having 4 revision surgeries to fix the VP shunt because I was having complications in my stomach. The fluid from my head was actually not draining into my stomach properly. Right now I'm finally on the road to recovery and though it has been a long and grueling experience. I stayed positive through most of it and I'm a great example of needing to stay positive through those difficult times. There were times that I wasn't sure that I'd still be here but thanks to some great doctors I'll be here for a very long time.