On this day, two years ago, I was diagnosed with a medical syndrome that would completely change my life. I was diagnosed with Median Arcuate Ligament Syndrome. It is crazy to think that is has already been two years, I can still remember sitting in Dr. Thompson's examination room and talking with him about how I needed to have surgery to resolve the issue. In two years everything can change, and for me, everything did change.
I had my MALS surgery on November 18, 2010 early in the morning. Three months later I was diagnosed with a neuropathy that covered my entire stomach and then after another three months I graduated from Stephens College. During that six month time period from my surgery to my graduation, I was told I needed to deferr my final semester of school because some of my professors did not think I could handle the school work, my extracurricular activities and still have a healthy recovery from my surgery. I am proud to say I proved them wrong, and just as I did then, I am fighting to make sure my health issues, that I still deal with on a daily basis, no longer have a hold on my life and what activities I do.
Since my MALS surgery, I have been diagnosed with a neuropathy that covers my entire stomach, Vaso Vagal Syndrome and I have had my appendix taken out. It doesn't necessarily seem like a whole lot but it is for a time span of two years. The other thing that I have begun to realize is because of all these health problems I have, my immune system is down. I get sick really easily so I take 7 different vitamins just to help my immune system fight back against the common viruses that go around.
Vaso Vagal Syndrome, as I already explained in a previous post, involves my heart and blood circulation. Eventually a person with vaso vagal syndrome will pass out because of their blood circulation not being what it should be. Many things can set off this syndrome, for me, the biggest one is standing in one spot to long. Basically what happens is my blood does not move through my body as quickly as it should. So it begins to pool in my legs, and the lack of blood going to my brain causes me to pass out. I can stand for about seven and a half minutes without moving and at 10 minutes I will pass out. At seven and a half minutes I start to experience symptoms of vaso vagal syndrome which are nausea, dizzy, hot and clammy. Basically I can tell you that I can going to pass out. I can also pass out when moving from different positions to quickly. So if I have been laying down for more than 15minutes then I have to slowly work to a sitting up position and then slowly stand up. Otherwise my blood pressure drops and I pass out, which I actually experienced this past summer when I woke up late for work, jumped out of bed which caused me to pass out and hit my head on a table which knocked me unconcious for over an hour! How crazy is that? But what can I say...I have skill. :-)
One last thing before I wrap it up for today, I have actually found some local businesses that are willing to sponsor and help me put on a benefit concert here in the Lake area to raise awareness about MALS. I am so excited to finally get started raising awareness about this issue. Hopefully it has a great turnout.
So, like I said, a lot can change in two years and for me and a lot of the other young adults that have faced MALS it has.
Thanks for listening...
Wednesday, November 14, 2012
Monday, February 20, 2012
Emergency Appendectomy Surgery: A Blessing in Disguise?
I have had a lot of unexpected things happen to me since I last posted. So let's start from the beginning...
As I told you, my neuropathy pain was getting worse and they kept increasing my medicines to try and get it back under control. However, it never happened. So, I called the GI doctor I saw last summer and made an appointment with him. I had not had a good experience at his office before, but the pain, dizzyness and nauseated feeling was getting worse and I had to go back. When I went back, I do not know if I finally explained the symptoms in a way he understood more or what, but he has decided the dizzy and nauseated feelings I experience on a daily basis is not a GI problem. He said he really thinks it is a neurological problem called Vaso Vagal Syndrome. Luckily it is a little more common than MALS, but for me to be properly diagnosed and treated for this syndrome I need to be sent to a neurologist. So, that is probably the next step for me, if the increased medicines he gave me would help any. Let me tell you, they have not helped, but just from him saying my symptoms fit this medical syndrome, I left his office feeling happier about my health than I have in a while. Typically, I feel like I never get good news when I am at the doctors...just look at my track record. haha. Even though, he was telling me that there was something else wrong with me and I would most likely have to see another doctor, I still was excited that it could be fixed and I do not have to live like this the rest of my life.
The next day, I saw Dr. Rastogi and Dr. Field. Since the Gabapentin seemed to have stopped working, Dr. Rastogi switched my neuropathy medicine to another kind of neuropathy medicine, Keppra (generic form). He also told me that I was to come back in a month and if I had not noticed a difference on this medicine then I needed to have a neurostimulator implanted. A neurostimulator would have leads placed along my spinal cord where the nerves to my stomach are and then the battery would be placed in my shoulder or near my lower hip where there is more tissue. Basically, this stimulator would help mask my pain by about 50 percent. I do not want this done. However, I sat there and listened to everything he had to say about it and then he told me I needed to tell Dr. Field (who I was going to see later that day) so that she could go ahead and do the psychological exam on me and put it in my file, in case the neurostimulator had to be done.
When I got home I started doing all this research on the neurostimulator. MedTronic is what Dr. Rastogi had given me a DVD and information on but I also looked up St. Jude Medical neurostimulator information as well. I just wanted to know everything I could about the situation.
...Meanwhile, my stomach pain and the nauseated feeling was getting really bad and while I had been at the doctors I had been told to go to my normal physician because they thought I had kidney stones or a bladder infection. So I went to Dr. Horner the same week I had gone to the other three and Dr. Horner thought I had something wrong with my kidneys so he sent me to have an ultra sound done and gave me some antibiotics just in case I did have some sort of infection. Then he told me to come back in a week to see how things were going. Throughout the weekend and next week the pain was becoming more centralized to a specific area. My mom started telling me she thought it might be my appendix and that I should just mention it to Dr. Horner when I saw him in a few days. By the end of my second appointment with Dr. Horner the stomach pain had gotten really bad. I could not sit still or get comfortable while he was trying to explain what he wanted to do next. He finally asked me to show him where the pain was again and when I pointed to my right side so he had me stand up and do something he called The Heel Drop test. I had to stand on my toes and then drop my heels, when I did that the pain was excruciating, it was unbelievable how such a little move created so much pain. So he immediately had me lay down on the table and he examined me while he had his nurse schedule an immediate ultrasound over at the hospital. In the end, it was my appendix. In fact, the nurses and doctors were scared it was going to rupture while I waited to go into surgery.
The surgeon said taking my appendix out would not stop the neuropathy pain. However, I have not had any extra neuropathy pain since my appendix was taken out!! How crazy is that?! Don't misunderstand me, I have had some neuropathy pain but that has only been when I eat (which is expected). It is unbelievable how much better I feel. I mean I am still super sore and in pain but not near what it has been for me the past couple of months. I see Dr. Rastogi and Dr. Field again this Thursday, maybe they will agree with me and think my appendix has had something to do with all this pain as well? I don't know, but I do know as much as I did not want to have another surgery, I feel like it may have solved a few of my problems. I guess only time will tell...
As I told you, my neuropathy pain was getting worse and they kept increasing my medicines to try and get it back under control. However, it never happened. So, I called the GI doctor I saw last summer and made an appointment with him. I had not had a good experience at his office before, but the pain, dizzyness and nauseated feeling was getting worse and I had to go back. When I went back, I do not know if I finally explained the symptoms in a way he understood more or what, but he has decided the dizzy and nauseated feelings I experience on a daily basis is not a GI problem. He said he really thinks it is a neurological problem called Vaso Vagal Syndrome. Luckily it is a little more common than MALS, but for me to be properly diagnosed and treated for this syndrome I need to be sent to a neurologist. So, that is probably the next step for me, if the increased medicines he gave me would help any. Let me tell you, they have not helped, but just from him saying my symptoms fit this medical syndrome, I left his office feeling happier about my health than I have in a while. Typically, I feel like I never get good news when I am at the doctors...just look at my track record. haha. Even though, he was telling me that there was something else wrong with me and I would most likely have to see another doctor, I still was excited that it could be fixed and I do not have to live like this the rest of my life.
The next day, I saw Dr. Rastogi and Dr. Field. Since the Gabapentin seemed to have stopped working, Dr. Rastogi switched my neuropathy medicine to another kind of neuropathy medicine, Keppra (generic form). He also told me that I was to come back in a month and if I had not noticed a difference on this medicine then I needed to have a neurostimulator implanted. A neurostimulator would have leads placed along my spinal cord where the nerves to my stomach are and then the battery would be placed in my shoulder or near my lower hip where there is more tissue. Basically, this stimulator would help mask my pain by about 50 percent. I do not want this done. However, I sat there and listened to everything he had to say about it and then he told me I needed to tell Dr. Field (who I was going to see later that day) so that she could go ahead and do the psychological exam on me and put it in my file, in case the neurostimulator had to be done.
When I got home I started doing all this research on the neurostimulator. MedTronic is what Dr. Rastogi had given me a DVD and information on but I also looked up St. Jude Medical neurostimulator information as well. I just wanted to know everything I could about the situation.
...Meanwhile, my stomach pain and the nauseated feeling was getting really bad and while I had been at the doctors I had been told to go to my normal physician because they thought I had kidney stones or a bladder infection. So I went to Dr. Horner the same week I had gone to the other three and Dr. Horner thought I had something wrong with my kidneys so he sent me to have an ultra sound done and gave me some antibiotics just in case I did have some sort of infection. Then he told me to come back in a week to see how things were going. Throughout the weekend and next week the pain was becoming more centralized to a specific area. My mom started telling me she thought it might be my appendix and that I should just mention it to Dr. Horner when I saw him in a few days. By the end of my second appointment with Dr. Horner the stomach pain had gotten really bad. I could not sit still or get comfortable while he was trying to explain what he wanted to do next. He finally asked me to show him where the pain was again and when I pointed to my right side so he had me stand up and do something he called The Heel Drop test. I had to stand on my toes and then drop my heels, when I did that the pain was excruciating, it was unbelievable how such a little move created so much pain. So he immediately had me lay down on the table and he examined me while he had his nurse schedule an immediate ultrasound over at the hospital. In the end, it was my appendix. In fact, the nurses and doctors were scared it was going to rupture while I waited to go into surgery.
The surgeon said taking my appendix out would not stop the neuropathy pain. However, I have not had any extra neuropathy pain since my appendix was taken out!! How crazy is that?! Don't misunderstand me, I have had some neuropathy pain but that has only been when I eat (which is expected). It is unbelievable how much better I feel. I mean I am still super sore and in pain but not near what it has been for me the past couple of months. I see Dr. Rastogi and Dr. Field again this Thursday, maybe they will agree with me and think my appendix has had something to do with all this pain as well? I don't know, but I do know as much as I did not want to have another surgery, I feel like it may have solved a few of my problems. I guess only time will tell...
Wednesday, January 11, 2012
A little update
It has been almost a year since I last posted on here. For that, I am sorry.
What goes through my head nowadays is how do you cope with a chronic pain and when you cannot cope with it, how do you not let it affect the people around you? I know my family says that they understand that I am still going to be in pain and they are here for me. But we all know that if someone sounds like a broken record then people get tired of it. I feel like I am to that point with the family and friends that have helped me with my health issues. So I try not to make a big deal about it and when it is too unbearable and I cannot help it then they will know. Otherwise, I have begun keeping my mouth shut. This way if we have something fun planned or we are just enjoying each other's company, I won't ruin it by curling up into a ball and make everyone uncomfortable.
Since I last wrote I was diagnosed with a neuropathy. A neuropathy is damaged nerves in one part of your body (basically). However, since I suffered from MALS for so long, my neuropathy covers my entire stomach and I have days where I cannot where jeans because when I sit down the hard material pushing against my stomach will increase the pain within seconds. It is crazy. So, now I am released from Dr. Thompson, but have been seeing 2 different types of pain management doctors. The first one is Dr. Rastogi, and let me tell you, he is awesome. Dr. Rastogi put me on Neurotin (generic form is Gabapentin), and started me at the lowest dose and each time I go back, depending on how I have been doing, he increases or decreases the dosages. Unfortunately I have not had the opportunity to have him decrease the meds but at one point in the early fall I had gone an entire week without any pain! How crazy is that?! I loved being able to go back to a doctor and finally feel like I had some good news to report back to them. Sadly, that one week is all that I have been able to go without having any pain. In fact, the pain has increased so much that I had to call Dr. Rastogi before my next appointment to have him increase my dose of medicine over the phone. Due to this fact, I am more irritated and upset than I have been in awhile, because I feel like this might be a bad sign. I say this because it did seem like it was getting better and now it feels like I am regressing. If this medication does not work then he will try another. If worse comes to worse, and he has tried all other options he is going to put in a nerve stimulator in (surgically) next to my spine. This stimulator will send a signal to break up the pain signals if I start to have pain. Essentially reducing the pain about 50%. The other doctor is Dr. Fields and she helps me "manage the pain." I go in with her for 30 minutes and she teaches me techniques to use when the pain starts to come. Hopefully I will not have to show I am in pain because I can do these little tricks she shows me. At my last visit with her she taught me self-hypnosis, by the end of the visit I was so dizzy and nauseated I was scared to stand up. She said that was normal and I just need to practice.
I go back to both of these doctors in a couple weeks for another check up. My worse fear is having them tell me that something else is wrong with me or that they can no longer help me. Dr. Rastogi has told me that it could take a couple years for the neuropathy to go away, but he does think it will go away! Which is exciting! My first time meeting with him he said it was something I was going to have to live with.
A couple posts back I mentioned that I had to learn to take into account the people around me and how they are helping me out as much as I can and I need to cut them some slack. I now live a few hours away from my mom and when I am by myself I find myself desperately wishing she was here to take care of me. She did it for so long, I just know I feel more comfortable knowing she is there. I know many of the older girls in the support group feel the same way. One woman had her surgery 15 months ago and she just found out she is pregnant. Her doctors' first reaction was scared for her, they do not think she should follow through on the pregnancy because they do not know if her arteries can withstand the pressure of giving birth, and because she has been trying to deal with a neuropathy as well, they just do not think it is a good idea. Even if the neuropathy goes away before the baby is born, doctors do not always suggest doing a c-section because there is a greater chance for the neuropathy to come back since she has already had one. Its sad because all the members of this group are young, she is the first to get pregnant and she really does not know what to do and unlike the other times, none of us have been in the situation to say "we know what you are going through." In all honesty, we don't.
This is the deal, there have been those lucky few who have the surgery and within a year they are totally fine and on the go. Then there are others, who are told the surgery will solve the problem but it doesn't. Just like everything else there are consequences to everything and while the surgery was a good thing, it also brought some consequences that can't be helped. Unfortunately I have fallen into the latter, but that is how it goes. I am determined not to let this get the better of me.
I have decided I am no longer missing events and I had planned on going to just because my health is creating an obstacle for me. The best way to move on is to fight back and I feel I have been doing a pretty good job of this. This idea of fighting back is what is keeping me focused on my goal to raise awareness and eventually raise funds for those who cannot afford all the doctor visits and surgical tests necessary. Every night I do more research and make phone calls to doctors across the country, so that I can get the data necessary to actually get this plan into more than just the researching stage. Hopefully, I can move to the next stage soon.
Will post again soon.
What goes through my head nowadays is how do you cope with a chronic pain and when you cannot cope with it, how do you not let it affect the people around you? I know my family says that they understand that I am still going to be in pain and they are here for me. But we all know that if someone sounds like a broken record then people get tired of it. I feel like I am to that point with the family and friends that have helped me with my health issues. So I try not to make a big deal about it and when it is too unbearable and I cannot help it then they will know. Otherwise, I have begun keeping my mouth shut. This way if we have something fun planned or we are just enjoying each other's company, I won't ruin it by curling up into a ball and make everyone uncomfortable.
Since I last wrote I was diagnosed with a neuropathy. A neuropathy is damaged nerves in one part of your body (basically). However, since I suffered from MALS for so long, my neuropathy covers my entire stomach and I have days where I cannot where jeans because when I sit down the hard material pushing against my stomach will increase the pain within seconds. It is crazy. So, now I am released from Dr. Thompson, but have been seeing 2 different types of pain management doctors. The first one is Dr. Rastogi, and let me tell you, he is awesome. Dr. Rastogi put me on Neurotin (generic form is Gabapentin), and started me at the lowest dose and each time I go back, depending on how I have been doing, he increases or decreases the dosages. Unfortunately I have not had the opportunity to have him decrease the meds but at one point in the early fall I had gone an entire week without any pain! How crazy is that?! I loved being able to go back to a doctor and finally feel like I had some good news to report back to them. Sadly, that one week is all that I have been able to go without having any pain. In fact, the pain has increased so much that I had to call Dr. Rastogi before my next appointment to have him increase my dose of medicine over the phone. Due to this fact, I am more irritated and upset than I have been in awhile, because I feel like this might be a bad sign. I say this because it did seem like it was getting better and now it feels like I am regressing. If this medication does not work then he will try another. If worse comes to worse, and he has tried all other options he is going to put in a nerve stimulator in (surgically) next to my spine. This stimulator will send a signal to break up the pain signals if I start to have pain. Essentially reducing the pain about 50%. The other doctor is Dr. Fields and she helps me "manage the pain." I go in with her for 30 minutes and she teaches me techniques to use when the pain starts to come. Hopefully I will not have to show I am in pain because I can do these little tricks she shows me. At my last visit with her she taught me self-hypnosis, by the end of the visit I was so dizzy and nauseated I was scared to stand up. She said that was normal and I just need to practice.
I go back to both of these doctors in a couple weeks for another check up. My worse fear is having them tell me that something else is wrong with me or that they can no longer help me. Dr. Rastogi has told me that it could take a couple years for the neuropathy to go away, but he does think it will go away! Which is exciting! My first time meeting with him he said it was something I was going to have to live with.
A couple posts back I mentioned that I had to learn to take into account the people around me and how they are helping me out as much as I can and I need to cut them some slack. I now live a few hours away from my mom and when I am by myself I find myself desperately wishing she was here to take care of me. She did it for so long, I just know I feel more comfortable knowing she is there. I know many of the older girls in the support group feel the same way. One woman had her surgery 15 months ago and she just found out she is pregnant. Her doctors' first reaction was scared for her, they do not think she should follow through on the pregnancy because they do not know if her arteries can withstand the pressure of giving birth, and because she has been trying to deal with a neuropathy as well, they just do not think it is a good idea. Even if the neuropathy goes away before the baby is born, doctors do not always suggest doing a c-section because there is a greater chance for the neuropathy to come back since she has already had one. Its sad because all the members of this group are young, she is the first to get pregnant and she really does not know what to do and unlike the other times, none of us have been in the situation to say "we know what you are going through." In all honesty, we don't.
This is the deal, there have been those lucky few who have the surgery and within a year they are totally fine and on the go. Then there are others, who are told the surgery will solve the problem but it doesn't. Just like everything else there are consequences to everything and while the surgery was a good thing, it also brought some consequences that can't be helped. Unfortunately I have fallen into the latter, but that is how it goes. I am determined not to let this get the better of me.
I have decided I am no longer missing events and I had planned on going to just because my health is creating an obstacle for me. The best way to move on is to fight back and I feel I have been doing a pretty good job of this. This idea of fighting back is what is keeping me focused on my goal to raise awareness and eventually raise funds for those who cannot afford all the doctor visits and surgical tests necessary. Every night I do more research and make phone calls to doctors across the country, so that I can get the data necessary to actually get this plan into more than just the researching stage. Hopefully, I can move to the next stage soon.
Will post again soon.
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