Before going in for Microvascular Decompression Surgery (MVD), I was fine with knowing that I was going under the knife and I had seen the procedure on you tube, as bloody and gory as it was it didn’t make me flinch. I knew this would be painful after surgery, dealing with the healing process and I knew what major surgery I was in for and all the possible side effects and risks to the surgery… but knowing the facts is only a small part of preparing yourself for major surgery… the Doctors and surgeons that I had seen did not tell me how I would feel emotionally after surgery…
After MVD I couldn’t look in the mirror… even though I knew what I would look like to a certain extent seeing it through a mirror would only confirm for me what I was going through and in order to stay strong for me and everyone around me I would rather go on seeing every ordeal as though I was watching a movie and seeing this character go through all this and just staying positive that she could handle anything!
Days after my MVD while still in hospital I vaguely remember asking my sister if she would take me to the mirror to have a look… she asked me if I was sure I was ready for this and I said yes, even though I wasn’t… but I was curious to see what everyone else was seeing when they looked at me. I looked and immediately felt weak to my knee’s, I was about to pass out from my own reflection… and so my sister took me back to my bed to lie down… I looked like I had been in the battlefields of war, my head was shaved, but very untidily, with patches of uneven hair here and there, cuts and bruises on my head, extreme swelling of my head, face and ear to the right side, a big bandage down the back of my head… I immediately put it out of my mind… so much so that I had forgotten that moment, my sister recently reminded me of it.
Six months after MVD I had to go into theatre again to have my wisdoms removed as they were impacted and causing pressure on my jaw and teeth and this was triggering the Trigeminal Neuralgia (TN). Fear set in and I was angry… wish there was another way, wishing I could just leave the wisdoms where they were and wishing that surgery never existed! I was angry at the surgeons, wondering how they slept at night after violating human bodies in surgery, how could they cut you open, alter you, hurt you, scare you, cause you pain… and then you wake up feeling different and looking butchered, seemed like they were playing “God” they had no right to do this and why did I have to be asleep not knowing what they were to doing to me… after awakening wondering why there are bruises, aches and pain in certain places, what could have happened? What was going on with me? Why now? Why not straight after the brain surgery? Why only 6 months later after needing to go in for surgery again…?
Everyone was asking how I could be scared to remove my teeth when I was so brave for brain surgery, saying if I could handle that I could handle anything! How could I explain to them this twisted view I now had of surgery??? My oral surgeon even asked me what actually scared me about going into theatre again. “Was it being asleep and not knowing or was it the actual surgery that scared me?” “Both” I responded, how could I explain to this man who was trying to help me, how I really felt about his profession.
I went through with surgery, I had no choice and I still knew even though I was different I had to make the right choice for my health… the wisdom removal caused severe TN pain and I needed more pain block injections to calm my nerves down and this then caused my respiratory system to shut down and I was in ICU again with machines breathing for me (find more info on this in my previous post “Impacted Wisdom Teeth Removal – Pain-blocks Shut Down Respiratory System”) After waking up from this again nightmare of an experience I was in tears, my sister, mum and husband were there, praying and waiting for me to wake up, and when I did I so ungratefully asked them why I had to wake up, why didn’t they just leave me to go, I was so tired of all of this… of feeling this way! In and out of hospitals and doctors constantly working on me like I was meat to a butcher! I know now that by me not being strong emotionally since my post MVD that I was now causing emotional trauma to my family, which was the last thing I wanted to do, having to see me through all of this was bad enough I now had them thinking that I just wanted to die… and I didn’t want them to know that!
A month later I was being prepped for eye surgery, having a precancerous tumor removed from my right eye socket. (You can read more about my Solitude Fibrous Tumor and its re-occurrence in previous posts) I was becoming numb… feeling like I was in a war zone… moving from camp to camp! After this surgery too I didn’t look in the mirror for the duration of the healing process, kept wondering how everyone stomached looking at me, how my dear husband managed cleaning and dressing the eye everyday. Again I was pretending it wasn’t me, just watching a movie of a person who was brave and strong and doing the best she could to get through it all…
After all of this I eventually got the courage to research what was wrong with me emotionally… my thinking had been altered drastically and I knew if I researched it I would understand better, I found out, like many others I was dealing with Post-Traumatic Stress Disorder… first known to affect soldiers after war… the first term for this condition was actually known as having a “Soldiers Heart”
From Wikipedia, the free encyclopedia
Posttraumatic stress disorder (also known as post-traumatic stress disorder or PTSD) is a severe anxiety disorder that can develop after exposure to any event that results in psychological trauma. This event may involve the threat of death to oneself or to someone else, or to one's own or someone else's physical, sexual, or psychological integrity, overwhelming the individual's ability to cope. As an effect of psychological trauma, PTSD is less frequent and more enduring than the more commonly seen acute stress response. Diagnostic symptoms for PTSD include re-experiencing the original trauma(s) through flashbacks or nightmares, avoidance of stimuli associated with the trauma, and increased arousal – such as difficulty falling or staying asleep, anger, and hypervigilance. Formal diagnostic criteria require that the symptoms last more than one month and cause significant impairment in social, occupational, or other important areas of functioning.
Which explains why even now over 2 years after MVD I still have flashbacks when I get a silly paper cut or see blood, a wound or cut or bruise makes me queasy… makes me feel like I am back there again… I can’t look at it, it’s just unnatural!
I had surgery again in March this year, the tumor in my right eye grew back and that was removed again… I had never been so scared of anything before in my life and the reality of the tumor being the type that grows back after surgery and having to keep operating on that same eye made things worse… I recently had to have x-rays done of my neck and spine and this too made me emotional…
The reason why I am writing this article today is because yesterday I was back there… Back in the moment of feeling hurt! I got a flu sore on my lip and after my shower yesterday I wiped my face and the skin came off from the sore and my lip was bleeding and swollen. I looked in the mirror because I felt the sting and didn’t expect to see what I saw… It took me back to my allergic reaction to Tegretol, where my lips were yellow and I accidentally wiped them and the top layers of my lips came off and it just bled. Even though what happened yesterday was completely unrelated and it was a silly flu sore that didn’t cause me pain, emotionally when I looked in the mirror I saw the day I was bleeding from the Tegretol allergy in 2007… I cried yesterday wondering why I had to remember all of this, why I had to feel this way again… all common sense goes out the door and anger again starts to creep in…
Many people that have been for surgery refuse to have surgery again even if it’s a life or death situation, when you ask them why they can’t explain why they feel the way they do. Some doctors advise patients to see a counselor before major surgery, but most don’t. I’m hoping that anyone that reads this that may need surgery in the future or may know of someone in the situation will try to get counseling before surgery. Do not take it lightly as it changes you in ways you can’t imagine…
I find sanity in talking to my nephew who had major spinal surgery as a baby… he used to ask his mum why the doctors hurt him, why was he sleeping when they did that, why does he have such a bad scar… even though he knew surgery was for his own good, that they were fixing his back and trying to help him, these questions where still there and the feeling of being hurt and violated was there… even today he is scared to go for check-ups and scans. My colleague at work had corneal transplants and he too now refuses to go back for check-ups and says that he will never go back for another operation… when I asked why he couldn’t explain… but I could see PTSD was there…
My question today is, how long does PTSD last? Will I be this way forever? How do you get stronger?
Friday, December 10, 2010
Tuesday, October 5, 2010
Orbital Solitary Fibrous Tumor & Trigeminal Neuralgia, Any Relation?
I have been wondering if either my Trigeminal Neuralgia (TN) caused my Solitary Fibrous Tumor (SFT) or my SFT caused my TN? Doctors say that there isn’t any relation to the two
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After my first two TN major pain attacks I noticed the bulge in my right eye, my neurologist at the time suggested I see an Ophthalmologist who charged me a fortune to tell me it was just an eye infection. So this tumor was there since my TN was there at the very beginning.
After finding out that it was a tumor growing in my eye socket on the then TN affected side of my face and having it removed my TN went into remission too. I then triggered it off again 10 months later by having my wisdoms removed… 2 months after that I had the tumor removed again and my TN went into remission again.
Thankfully the tumor has not re-occurred and neither has the TN.
This is all too much of a coincidence for me but doctors say they are not related in any way. If there is anyone out there that has had a similar experience I would love to look into this more
.
After my first two TN major pain attacks I noticed the bulge in my right eye, my neurologist at the time suggested I see an Ophthalmologist who charged me a fortune to tell me it was just an eye infection. So this tumor was there since my TN was there at the very beginning.
After finding out that it was a tumor growing in my eye socket on the then TN affected side of my face and having it removed my TN went into remission too. I then triggered it off again 10 months later by having my wisdoms removed… 2 months after that I had the tumor removed again and my TN went into remission again.
Thankfully the tumor has not re-occurred and neither has the TN.
This is all too much of a coincidence for me but doctors say they are not related in any way. If there is anyone out there that has had a similar experience I would love to look into this more
2nd Removal of Solitary Fibrous Tumor April 2010
I saw the surgeon and told him that I would do the Bone-flap operation and do what ever it took to remove this entire tumor while I could. He told me that the operation would be performed by him and another Eye surgeon who specialized in this kind of problem. He discussed my case with the other surgeon who suggested that they do not cut and do the bone flap they will rather go in under the eye ball and use something called a Burr (used to shape diamonds) to shave the socket to make more space to remove the tumor entirely, if during surgery they find that it is still difficult to remove the tumor this way they would then decide to do the bone flap as a last resort. I was happy with this decision and know that I was in the best hands and that they were so concerned with my case and I was treated like an individual not just another number… I knew they would do whatever it took to help me.
I went into surgery on the 18th April 2010… I was so concerned that the TN would start up after the op that I asked the surgeon if he could keep me in hospital even though the op was just a day procedure, if they could keep me just to monitor me during the night and give me medication if the pain was unbearable… I went into theatre and was introduced to the second surgeon who asked me if he could photograph my eye, to which I said yes hoping that anything I was going through could be used for the greater good of others. I woke up after they wheeled me out of theatre and my mum whispered in my ear that they didn’t cut and do the bone-flap, this was such a relief, I remember feeling pain though and they gave me meds and later that evening I woke up and ate and could go to the bathroom myself…
The next day when the surgeon looked at my eye there was no blood clots no bruising… just swelling that would soon go down. He explained that just by shaving the socket a little it loosened the tumor which they removed in one piece and they were confident that no tumor tissue was left behind… this was such a relief. The only thing I was struggling with was looking to my sides; I had double vision when looking to the extreme left or right. This he said will go away with time…
It did not trigger off the neuralgia and its been six months since that operation…
In fact today was my follow-up appointment & everything is still perfect, no sign of that tumor again :o)
I went into surgery on the 18th April 2010… I was so concerned that the TN would start up after the op that I asked the surgeon if he could keep me in hospital even though the op was just a day procedure, if they could keep me just to monitor me during the night and give me medication if the pain was unbearable… I went into theatre and was introduced to the second surgeon who asked me if he could photograph my eye, to which I said yes hoping that anything I was going through could be used for the greater good of others. I woke up after they wheeled me out of theatre and my mum whispered in my ear that they didn’t cut and do the bone-flap, this was such a relief, I remember feeling pain though and they gave me meds and later that evening I woke up and ate and could go to the bathroom myself…
The next day when the surgeon looked at my eye there was no blood clots no bruising… just swelling that would soon go down. He explained that just by shaving the socket a little it loosened the tumor which they removed in one piece and they were confident that no tumor tissue was left behind… this was such a relief. The only thing I was struggling with was looking to my sides; I had double vision when looking to the extreme left or right. This he said will go away with time…
It did not trigger off the neuralgia and its been six months since that operation…
In fact today was my follow-up appointment & everything is still perfect, no sign of that tumor again :o)
Solitary Fibrous Tumor of the Right Orbit Returns
After having the tumor removed from my right eye socket in March 2009 I found that my Trigeminal Neuralgia finally seemed to be at peace… it went into remission and I never needed any of those dreadful meds. Six months had passed but I was too scared to poke around my eye to see if I could feel anything abnormal… I was scared to try see if the tumor was growing back so I just ignored it… in 2010 it was now visible to everyone that the bulge on the side of my eye had returned and that meant that the tumor had grown back as I had feared… I went to see the surgeon and he sent me for more scans that confirmed that the tumor was back, I assumed it would be the same op and we keep doing this for as long as we needed to, until it decided to stop growing, I knew leaving it was not an option as it was a pre-cancerous tumor.
This time however the doctor told me that I had to make a decision, to either have the same op that I did previously to remove the tumor which he didn’t suggest because this meant it could grow back again, and this way there was only a limited amount of space to work within and very difficult to see whether all of the tumor tissue was removed as there is so much tissue in the eye. He suggested that we cut a little on the skin, from the side off the eye towards the temple, but only a centimeter or so, cut the bone there and go into the socket from the side of the eye, this way they would have more space to work with and better visibility which was crucial to removing the tumor entirely and not leaving behind even the tiniest amount of tissue & then using a metal pin where they had to break the bone to get into the socket and stitching up again.
I knew this was the better option if I wanted a good chance of this tumor not growing back but I was so scared… I was going to be scared for life but that was the least of my concerns… there’s tiny little branches from the Trigeminal nerve that runs all around that area of the eye, and the surgeon would have to cut through those nerve endings to cut the bone and then put a metal pin in there… all of this felt like it was so unnecessary for me to under go the brain surgery in the first place because ever since then so much had happened to undo all that work to calm the nerves down…
I again consulted my Professor who called me and said that I should do the “bone-flap” because if I did the simple operation and the tumor grew back I could get cancer and then they would have to remove my entire eye ball and it would spread into my face and be unstoppable. He painted a very scary picture in my mind and even though that seemed harsh at the time it was what I needed to hear to push me to be brave and do what I could to get rid the tumor while I had the opportunity to. He said even if it affected the TN, that should be the last of my concerns and we would deal with that when we had to. I was concerned that if it triggered of the TN no one would be able to help me because the last time they gave me the pain-block injections in my nerve it caused my respiratory system to shut down… but the Professor made it clear that that was a small problem in comparison to the possibility of cancer… Spoke to the surgeon who did the my MVD & he too said the same thing… so the Bone-Flap operation was the way to go.
This time however the doctor told me that I had to make a decision, to either have the same op that I did previously to remove the tumor which he didn’t suggest because this meant it could grow back again, and this way there was only a limited amount of space to work within and very difficult to see whether all of the tumor tissue was removed as there is so much tissue in the eye. He suggested that we cut a little on the skin, from the side off the eye towards the temple, but only a centimeter or so, cut the bone there and go into the socket from the side of the eye, this way they would have more space to work with and better visibility which was crucial to removing the tumor entirely and not leaving behind even the tiniest amount of tissue & then using a metal pin where they had to break the bone to get into the socket and stitching up again.
I knew this was the better option if I wanted a good chance of this tumor not growing back but I was so scared… I was going to be scared for life but that was the least of my concerns… there’s tiny little branches from the Trigeminal nerve that runs all around that area of the eye, and the surgeon would have to cut through those nerve endings to cut the bone and then put a metal pin in there… all of this felt like it was so unnecessary for me to under go the brain surgery in the first place because ever since then so much had happened to undo all that work to calm the nerves down…
I again consulted my Professor who called me and said that I should do the “bone-flap” because if I did the simple operation and the tumor grew back I could get cancer and then they would have to remove my entire eye ball and it would spread into my face and be unstoppable. He painted a very scary picture in my mind and even though that seemed harsh at the time it was what I needed to hear to push me to be brave and do what I could to get rid the tumor while I had the opportunity to. He said even if it affected the TN, that should be the last of my concerns and we would deal with that when we had to. I was concerned that if it triggered of the TN no one would be able to help me because the last time they gave me the pain-block injections in my nerve it caused my respiratory system to shut down… but the Professor made it clear that that was a small problem in comparison to the possibility of cancer… Spoke to the surgeon who did the my MVD & he too said the same thing… so the Bone-Flap operation was the way to go.
1st Solitary Fibrous Tumor Removal March 2009
I had a lump in my right eye for as long as the TN was around… from my first attacks and being diagnosed with TN. I did see an Opthalmologist who looked and said it was just an eye infection and gave me ointment… Even before the MVD my surgeon looked at my eye because it was bulging out so much and asked me to go get another opinion…
I couldn’t get an appointment with the eye specialist that I had researched so I had to see another specialist working with him… he looked at my eye and again said it nothing to worry about… & sent me to the optometrist working in their team… my eyesight on the affected eye was out of focus… as you can imagine if you push your finger against the side of you eye your vision will be affected. I explained for how long this bulge had been there and about my Trigeminal Neuralgia on the same side as the eye bulge. She asked me to bring her the MRI scans of my brain that was taken for the TN, because in these scans the affected eye is very clear. I dropped them off and she then took this to the specialist that I originally wanted to see as he is the best but he was booked months in advance. He had a look at my scans and called me to come in to see him ASAP. He sent me to have scans done of just my eye… this showed that there was a tumor in my eye socket that was growing and causing the bulge.
He suggested we operate to remove the tumor and have it tested to find out more… again I was in the war zone! I consulted my Professor and the surgeon who did my MVD they both said that the tumor removal will not affect the TN and that in no way do they think the tumor grew as a result of the TN. The tumor was removed in March 09’. The pathology report showed that this was a “Solitude Fibrous Tumor” One that keeps growing back and it is important to keep removing it surgically as it is a pre-cancerous tumor and leaving it will only result in it turning cancerous and growing onto the bone of the face and spreading…
The eye was swollen and bloody for a week or so… my dearest angel of a hubby had to clean and dress it daily and insert my ointment. He had to carry me and guide me through the house as trying to open the left eye meant that the right eye would try open as well so it was important to keep both eyes closes… soon it healed! The eye heals super fast! The Surgeon set up a follow up appointment for me in six months to check on in to see if it was growing back or not…
I couldn’t get an appointment with the eye specialist that I had researched so I had to see another specialist working with him… he looked at my eye and again said it nothing to worry about… & sent me to the optometrist working in their team… my eyesight on the affected eye was out of focus… as you can imagine if you push your finger against the side of you eye your vision will be affected. I explained for how long this bulge had been there and about my Trigeminal Neuralgia on the same side as the eye bulge. She asked me to bring her the MRI scans of my brain that was taken for the TN, because in these scans the affected eye is very clear. I dropped them off and she then took this to the specialist that I originally wanted to see as he is the best but he was booked months in advance. He had a look at my scans and called me to come in to see him ASAP. He sent me to have scans done of just my eye… this showed that there was a tumor in my eye socket that was growing and causing the bulge.
He suggested we operate to remove the tumor and have it tested to find out more… again I was in the war zone! I consulted my Professor and the surgeon who did my MVD they both said that the tumor removal will not affect the TN and that in no way do they think the tumor grew as a result of the TN. The tumor was removed in March 09’. The pathology report showed that this was a “Solitude Fibrous Tumor” One that keeps growing back and it is important to keep removing it surgically as it is a pre-cancerous tumor and leaving it will only result in it turning cancerous and growing onto the bone of the face and spreading…
The eye was swollen and bloody for a week or so… my dearest angel of a hubby had to clean and dress it daily and insert my ointment. He had to carry me and guide me through the house as trying to open the left eye meant that the right eye would try open as well so it was important to keep both eyes closes… soon it healed! The eye heals super fast! The Surgeon set up a follow up appointment for me in six months to check on in to see if it was growing back or not…
Impacted Wisdom Teeth Removal - Pain-blocks Shut down Respiratory System
February 2009... My wisdom's were impacted and putting pressure on my entire jaw and causing trigeminal neuralgia pain... I was sent to an Oral surgeon who said that I had to remove the wisdom's in theatre. I was worried that this operation would trigger off the TN attacks, I consulted my doctor who said that it shouldn't trigger it off but either way I had to remove them because they were already causing the nerves to go haywire.
I had them removed and after the operation as I suspected, the TN was back to torture me... I went to my Professor for pain-blocks (injections into the nerve to numb the pain and calm the nerves and stop the cycle of attacks), I couldn't wait for him to book me in and give me anesthetic before administering the pain-blocks so I asked the Professor to give them to me in his consulting rooms, he injected me on the left and gave me a minute to take it in... And then he injected me on the right... I started seeing spots and I knew I was about to black out...
Hours later I woke up not remembering what had happened or where I was... I had never been in this room before, the curtains the beds the nurses, nothing looked familiar; I thought I was dreaming... I could see a big clock on the wall... looking at the time but not being able to find any pieces of the day to put together in my mind... I was in my underwear and just a top, I could see a heart monitor... and I could hear the beeping of the machines around me... it was very bright in the room...curtains on either side of me I could only see straight ahead into the hall way... I had a pipe down my throat that was helping me breath, I started to panic not knowing were I was... was this all just a bad dream, I tried to breathe but the pipe that was in my throat was pumping air in at the same time... and I started to chock, but I couldn't get the nurses attention... I thought that was the end of me, I would chock and no one would see... my hands were tied to the bed... so I couldn't remove the pipes myself or press a button for help, but I was struggling as hard as I could to get free…
Next thing I looked up and there my husband walked in... I was pointing to my throat as best as I could with my arms tied to the sides of the bed... he immediately understood I was choking and called the nurse and then I saw my Professor who came over and pulled out the pipe that was so deep into my throat... was good to breathe again on my own without all the confusion but the pain in my throat from the pipe and the feeling of it being pulled out so fast made me throw up... I'm sure I saw blood... I was crying and asking what happened... they explained to me that after the second pain block in the right side of my neck my respiratory system shut down and they rushed me to ICU where they hooked me up to oxygen machines and so on... the Professor could not explain why the pain blocks did this to me... I had had them many times before the only thing that was different about this time was that 6 months prior I had been for Microvascular Decompression where the surgeon said that my Trigeminal nerves were already damaged, discolored and being choked by arachnoids (protective layers) the surgeon could only scrape the nerve in hopes that it would heal and regenerate again... could this be the reason why the pain block injection into that nerve caused my respiratory system to shut down... was it because it was damaged and also scraped... and the fluid that was injected into it now was not safe, the Professor could not answer my questions but one thing was clear... I could not get pain-block treatments anymore as it was now too dangerous... not knowing whether I would wake up from the comma the next time around... So all hope was lost... no more treatment... only medication which never helped at all... no answers... only pain.
I had them removed and after the operation as I suspected, the TN was back to torture me... I went to my Professor for pain-blocks (injections into the nerve to numb the pain and calm the nerves and stop the cycle of attacks), I couldn't wait for him to book me in and give me anesthetic before administering the pain-blocks so I asked the Professor to give them to me in his consulting rooms, he injected me on the left and gave me a minute to take it in... And then he injected me on the right... I started seeing spots and I knew I was about to black out...
Hours later I woke up not remembering what had happened or where I was... I had never been in this room before, the curtains the beds the nurses, nothing looked familiar; I thought I was dreaming... I could see a big clock on the wall... looking at the time but not being able to find any pieces of the day to put together in my mind... I was in my underwear and just a top, I could see a heart monitor... and I could hear the beeping of the machines around me... it was very bright in the room...curtains on either side of me I could only see straight ahead into the hall way... I had a pipe down my throat that was helping me breath, I started to panic not knowing were I was... was this all just a bad dream, I tried to breathe but the pipe that was in my throat was pumping air in at the same time... and I started to chock, but I couldn't get the nurses attention... I thought that was the end of me, I would chock and no one would see... my hands were tied to the bed... so I couldn't remove the pipes myself or press a button for help, but I was struggling as hard as I could to get free…
Next thing I looked up and there my husband walked in... I was pointing to my throat as best as I could with my arms tied to the sides of the bed... he immediately understood I was choking and called the nurse and then I saw my Professor who came over and pulled out the pipe that was so deep into my throat... was good to breathe again on my own without all the confusion but the pain in my throat from the pipe and the feeling of it being pulled out so fast made me throw up... I'm sure I saw blood... I was crying and asking what happened... they explained to me that after the second pain block in the right side of my neck my respiratory system shut down and they rushed me to ICU where they hooked me up to oxygen machines and so on... the Professor could not explain why the pain blocks did this to me... I had had them many times before the only thing that was different about this time was that 6 months prior I had been for Microvascular Decompression where the surgeon said that my Trigeminal nerves were already damaged, discolored and being choked by arachnoids (protective layers) the surgeon could only scrape the nerve in hopes that it would heal and regenerate again... could this be the reason why the pain block injection into that nerve caused my respiratory system to shut down... was it because it was damaged and also scraped... and the fluid that was injected into it now was not safe, the Professor could not answer my questions but one thing was clear... I could not get pain-block treatments anymore as it was now too dangerous... not knowing whether I would wake up from the comma the next time around... So all hope was lost... no more treatment... only medication which never helped at all... no answers... only pain.
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