Had an interesting session with the neurosurgeon today. In his opinion, it is unlikely that the tumour is causing the TN as it is only 3cms whereas they are usually 4cms before they interfere with the trigeminal nerve. He feels that it is more likely compression of the nerve by a blood vessel that is causing the TN. So I now have two things to be dealt with.
About 1 person in 100,000 gets an acoustic neuroma. And about 1 person in 100,000 gets TN. So what are the odds of someone getting both?
I need to have the acoustic neuroma operated on at the same time that they do a microvascular decompression - making for a very long and complex operation - if it is all done surgically.
So now I have to find out about all the possibilities for the two operations - Gamma Knife, endoscopic microvascular decompression, etc. Need to weigh up the risks and the benefits of each procedure.
Interesting the cards that life deals us eh? And how things can change so dramatically in the space of one week.
You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.
Showing posts with label causes. Show all posts
Showing posts with label causes. Show all posts
Friday, March 7, 2008
Wednesday, March 5, 2008
Back to the neurologist
I got a call from the neurologist's secretary. Instead of going in tomorrow as originally scheduled, he wanted to see me today - urgently. Of course, this could only mean one thing - bad news.
I went straight away. I had to wait in the waiting room whilst the scheduled patients had their turns. Finally, an hour later, I went in. He said that he had called me to come in straight away because the MRI scan was "not normal". He then went through the six or so films showing me a growth in my head - a vestibular schwannoma (otherwise known as an acoustic neuroma).
A vestibular schwannoma is a noncancerous (benign) tumor that develops adjacent to your brain on a portion of the eighth cranial nerve, which runs from your brain to your inner ear and controls balance and hearing. Although it is one of the most common types of brain tumors, these tumors are still rare, occurring in about one person in 100,000. For a good article on vestibular schwannomas see:
http://www.emedicine.com/ent/fulltopic/topic239.htm#section~Workup
The tumour was clearly visible on my films, especially the ones in which the contrast dye had been used. As the neurologist said, it was "shining like a Christmas tree light". He felt that it was this that was causing the TN.
His secretary made an appointment for me to see a neurosurgeon in two days time (Friday) so that I could have the diagnosis confirmed and discuss the options.
Here is a story of a young fashion model who, after struggling with one misdiagnosis after another, finally discovers the truth: she has a large acoustic neuroma. The following journey would either save her life or end it in the process.
You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.
I went straight away. I had to wait in the waiting room whilst the scheduled patients had their turns. Finally, an hour later, I went in. He said that he had called me to come in straight away because the MRI scan was "not normal". He then went through the six or so films showing me a growth in my head - a vestibular schwannoma (otherwise known as an acoustic neuroma).
A vestibular schwannoma is a noncancerous (benign) tumor that develops adjacent to your brain on a portion of the eighth cranial nerve, which runs from your brain to your inner ear and controls balance and hearing. Although it is one of the most common types of brain tumors, these tumors are still rare, occurring in about one person in 100,000. For a good article on vestibular schwannomas see:
http://www.emedicine.com/ent
The tumour was clearly visible on my films, especially the ones in which the contrast dye had been used. As the neurologist said, it was "shining like a Christmas tree light". He felt that it was this that was causing the TN.
His secretary made an appointment for me to see a neurosurgeon in two days time (Friday) so that I could have the diagnosis confirmed and discuss the options.
Here is a story of a young fashion model who, after struggling with one misdiagnosis after another, finally discovers the truth: she has a large acoustic neuroma. The following journey would either save her life or end it in the process.
You can read more about my fight with an acoustic neuroma in my About Acoustic Neuromas blog.
Monday, March 3, 2008
The MRI scan
Monday - MRI-day!!
My MRI scan was scheduled for 9.00am. I thought I might go on from there into the office as I felt fairly good.
I was apprehensive about the MRI scan of course. Wasn't sure what to expect. I visualised that I would be almost totally enclosed by the machine. But that wasn't the case. They provide a mirror above you so that you can see out of the scanner into the room, and through the window where the medical staff are. That's good coz it makes you think you have lots of space whereas in reality your head and shoulders are really enclosed in a little area. They provide ear plugs coz of the noise of the scanner.
They did a scan for about 30 minutes, during which time I actually just about went to sleep. The scanner stopped - but they left me lying in the MRI. Then I saw the female medic pointing to the screen and discussing with another male medic. Then they came in and the medic said they wanted to give me an injection of something to make the image of whatever they had found clearer on the scanner. I could hardly hear what they were saying coz of the ear plugs. So then I had another 15 minutes of scanning.
I was hoping that this scan would indicate exactly where the blood vessel was pressing on the trigeminal nerve. I was fairly sure that nothing else would be found. But during the scan, I had a bad feeling about it - the way they pointed at the computer screen and talked animatedly and then came to give me the injection of the contrast dye before doing another scan. I was now certain they had found something. Most likely a tumour.
Strange how when you think of a brain tumour, you immediately think of a cancerous one and immediately think the worst.
I didn't go into the office afterwards. During the afternoon I got more and more depressed. I walked on the beach and asked why this should happen to me now. Just when I had finally found happiness in a wonderful relationship, why should it be snatched away? I realised that I was starting to wallow in self-pity, so I decided to do a web search of the things they might have found.
I guess trying to self-diagnose using the Internet and based on little evidence is not always a good idea. In my case I felt much more positive about my future after I had done my search. It seemed to me that given all my symptoms, if I did have a tumour, then it was likely to be an acoustic neuroma - a benign tumour that causes deafness (which I certainly had in my right ear) and in some cases can cause TN.
This made me feel much better....
My MRI scan was scheduled for 9.00am. I thought I might go on from there into the office as I felt fairly good.
I was apprehensive about the MRI scan of course. Wasn't sure what to expect. I visualised that I would be almost totally enclosed by the machine. But that wasn't the case. They provide a mirror above you so that you can see out of the scanner into the room, and through the window where the medical staff are. That's good coz it makes you think you have lots of space whereas in reality your head and shoulders are really enclosed in a little area. They provide ear plugs coz of the noise of the scanner.
They did a scan for about 30 minutes, during which time I actually just about went to sleep. The scanner stopped - but they left me lying in the MRI. Then I saw the female medic pointing to the screen and discussing with another male medic. Then they came in and the medic said they wanted to give me an injection of something to make the image of whatever they had found clearer on the scanner. I could hardly hear what they were saying coz of the ear plugs. So then I had another 15 minutes of scanning.
I was hoping that this scan would indicate exactly where the blood vessel was pressing on the trigeminal nerve. I was fairly sure that nothing else would be found. But during the scan, I had a bad feeling about it - the way they pointed at the computer screen and talked animatedly and then came to give me the injection of the contrast dye before doing another scan. I was now certain they had found something. Most likely a tumour.
Strange how when you think of a brain tumour, you immediately think of a cancerous one and immediately think the worst.
I didn't go into the office afterwards. During the afternoon I got more and more depressed. I walked on the beach and asked why this should happen to me now. Just when I had finally found happiness in a wonderful relationship, why should it be snatched away? I realised that I was starting to wallow in self-pity, so I decided to do a web search of the things they might have found.
I guess trying to self-diagnose using the Internet and based on little evidence is not always a good idea. In my case I felt much more positive about my future after I had done my search. It seemed to me that given all my symptoms, if I did have a tumour, then it was likely to be an acoustic neuroma - a benign tumour that causes deafness (which I certainly had in my right ear) and in some cases can cause TN.
This made me feel much better....
Friday, February 22, 2008
The acupuncturist and the dentist
On February 4th I had taken three tegretol tablets starting in the afternoon as soon as the doctor had given the go ahead to come off the Lyrica. So by the next day, I think that increased dose was already improving things in that the attacks, though still occurring, were not sustained/repeated spasms and not as violent. I actually ate (more like gulped without letting it touch the front of my mouth or tongue) a bowl of porridge in the morning without too much pain. And I was managing to drink easier - all I had been able to drink all the day before was two cups of warm milk - couldn't manage anymore, so was quite dehydrated as well.
So I am already feeling a little better on February 5th as I sit in the waiting room of the acupuncturist with about four other people. It is clear from all the wall charts that this person is not just an acupuncturist - he also practices chiropractic, kinesiology, natural medicine and clinical nutrition forms of health care. Altogether - a holistic natural health care.
I guess because this was the first meeting with the acupuncturist, there were no needles - just tests. He said he couldn't cure the TN 'coz I'd had it so long, but he thought he could alleviate it. He thought one problem might be an uneven bite so he asked me to go for a "bite test" with a dentist first. So no relief - in fact aggravation 'coz during the consultation I realised that I still couldn't talk without causing the pain - and he asked me to bite on a stick - and wow!! did that hurt.
Took me awhile to calm down when I got back home. Was still shaky - part of the problem was I had very little and only intermittent sleep the night before - which I later realised was probably the withdrawal symptoms of coming off the Lyrica.
The next day I went to see the dentist. An interesting "holistic" sort of dentist - the first question he asked me was - what was I feeling guilty about or not communicating. He said it was time to let it go and that we punished ourselves far too much. Interesting thought that connected with my friend's comment about "unresolved issues". But I thought that all my issues had been resolved. I now had a new love in my life - someone with whom I shared so many interests and who was a really good friend as well as a lover.
The dentist pressed his finger against my jaw joint and asked me to open my jaw. Bolts of lightening shot through my head. I sat up in the dentists' chair and held my head, panting short breaths through my mouth, tears in my eyes. After a minute they subsided and slowly I relaxed again. He then attended to making the mold for the orthodontic splint.
For the next week or so, the acupuncturist or "natural health care specialist" increased the number of visits. Finally, February 15 was the day for real serious treatment - but not pins. Instead his female assistant used a laser on the same points - temple, eyes, left ankle, wrists, ear lobe and tip. Not sure why I get laser rather than pins - but if it works, who cares?
So I am already feeling a little better on February 5th as I sit in the waiting room of the acupuncturist with about four other people. It is clear from all the wall charts that this person is not just an acupuncturist - he also practices chiropractic, kinesiology, natural medicine and clinical nutrition forms of health care. Altogether - a holistic natural health care.
I guess because this was the first meeting with the acupuncturist, there were no needles - just tests. He said he couldn't cure the TN 'coz I'd had it so long, but he thought he could alleviate it. He thought one problem might be an uneven bite so he asked me to go for a "bite test" with a dentist first. So no relief - in fact aggravation 'coz during the consultation I realised that I still couldn't talk without causing the pain - and he asked me to bite on a stick - and wow!! did that hurt.
Took me awhile to calm down when I got back home. Was still shaky - part of the problem was I had very little and only intermittent sleep the night before - which I later realised was probably the withdrawal symptoms of coming off the Lyrica.
The next day I went to see the dentist. An interesting "holistic" sort of dentist - the first question he asked me was - what was I feeling guilty about or not communicating. He said it was time to let it go and that we punished ourselves far too much. Interesting thought that connected with my friend's comment about "unresolved issues". But I thought that all my issues had been resolved. I now had a new love in my life - someone with whom I shared so many interests and who was a really good friend as well as a lover.
The dentist pressed his finger against my jaw joint and asked me to open my jaw. Bolts of lightening shot through my head. I sat up in the dentists' chair and held my head, panting short breaths through my mouth, tears in my eyes. After a minute they subsided and slowly I relaxed again. He then attended to making the mold for the orthodontic splint.
For the next week or so, the acupuncturist or "natural health care specialist" increased the number of visits. Finally, February 15 was the day for real serious treatment - but not pins. Instead his female assistant used a laser on the same points - temple, eyes, left ankle, wrists, ear lobe and tip. Not sure why I get laser rather than pins - but if it works, who cares?
Wednesday, February 13, 2008
Unresolved issues
Today I made a booking to see a neurologist - finally. The appointment is for February 28. Should have done this a long time ago. But before we get to that, I was telling the story of how it all started.
So, back in October 2006 when I first learned that I had TN, after a week or so, the pains went away again. And so once more I didn't make a big fuss about it when I saw the doctor for my regular check-up. Big mistake. But you feel rather stupid saying "Well, I had this pain that was triggered by a drop of water hitting my nose, but it has gone now".
Somehow, you feel awkward telling anyone about this excruciating pain that has no apparent external cause, because you feel as if they're going to look at you as if you're crazy. You feel as if they're saying "Yes - it's all in your head - maybe you should see a psychiatrist instead of a doctor".
I have often wondered how close to the truth this is. At the end of 2006, a colleague and good friend came to visit. I was telling him about my facial pains one day and he commented "Unresolved issues mate" (he is Australian). His point was that many of our physical health problems have their origins in mental and emotional states. His theory for these pains of mine was that I had unresolved issues that must be worked through before I could hope to get any release from the pain. Of course, he knew that I was going through a marriage break-up at the time - so one can see how he would arrive at that conclusion.
Strange thing is - that is exactly how it seemed to play out. By December, my wife and I had agreed an amicable separation. And the pains stopped ... or so I thought.
So, back in October 2006 when I first learned that I had TN, after a week or so, the pains went away again. And so once more I didn't make a big fuss about it when I saw the doctor for my regular check-up. Big mistake. But you feel rather stupid saying "Well, I had this pain that was triggered by a drop of water hitting my nose, but it has gone now".
Somehow, you feel awkward telling anyone about this excruciating pain that has no apparent external cause, because you feel as if they're going to look at you as if you're crazy. You feel as if they're saying "Yes - it's all in your head - maybe you should see a psychiatrist instead of a doctor".
I have often wondered how close to the truth this is. At the end of 2006, a colleague and good friend came to visit. I was telling him about my facial pains one day and he commented "Unresolved issues mate" (he is Australian). His point was that many of our physical health problems have their origins in mental and emotional states. His theory for these pains of mine was that I had unresolved issues that must be worked through before I could hope to get any release from the pain. Of course, he knew that I was going through a marriage break-up at the time - so one can see how he would arrive at that conclusion.
Strange thing is - that is exactly how it seemed to play out. By December, my wife and I had agreed an amicable separation. And the pains stopped ... or so I thought.
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