Dear Maria,
thank you so much for taking time to reply to me. I will surely go to Amazon and get your book.
My story is that I am 31 years of age. I have been bound to my bedroom for 10 years now (since age 21). I was punched on the back of my head with a chain at the age of 12. I was knocked out cold and hit the cement on the way down when I got knocked out by some bully from behind while I wasn't looking. Anyway, I got up and was fine. I led a normal life. Until around the age of 20 or 21.
That is when the symptoms slowly started. First it started with dizziness and disequilibrium. For example, if I was in the car and the car would be moving and then it would stop, I would feel like I was still moving. This is a very scary feeling. This dizziness led to anxiety (something no-one in my family has). Then I saw a psychiatrist. He said this is physical. I went to a cardiologist (I also started having rapid heart beats).. and he said go see a psychiatrist.
I went doctor to doctor. The condition got so bad in July of 2002 that I had to quit college. I was only 21 years old. I started suffering from head pressure, vision problems, anxiety and severe balance issues to the point I stopped functioning like a normal human being anymore. Luckily I was a computer programmer and a very good one at that so I was able to work out of my bedroom to earn a living.
Nevertheless, I lived in California (still do). Went to Standford, went to UCLA, even met Dr Hrayr Shahinian at the Cedar Senai Medical Center (twice around 2006). At this time I was 25 years old and all they had found was a 4mm pineal gland cyst.
I went to all kinds of chiropractors, nuerologists, nuerosurgeons, eye doctors, heart doctors, chinese medicine doctors, even cranial doctors. One cranial doctor stuck balloons in my nose and inflated them down my throat pressing up against the sphenoid bone and told me that he was going to change the shape of my cranium. This was called NCR (founded by Dr. Dean Howell). I spent thousands and maybe over 100,000 usd on these doctors. I paid a dentist about 50,000 usd to re-align my bite completely. I spent every dollar I made on the doctors. I even saw multiple psychiatrists.
I even went to the famous Amen clinic in New Port beach and lived the for 2 months before they said they could not help me.
Then in Feb of 2012 I went to a local Oncologist who was offering Hyperbaric oxygen therapy. He said it would help me. After only 1 session I had a horrible reaction and suffered a form of barotrauma. I demanded an MRI immediately he refused (the doctor who gave the barotrauma). I went to a local nuerologist and he refused the MRI also saying I was basically a quack (not in those words of course).
I went to my psychiatrist and told him they wont give me the MRI. He himself, does not know why I am so dizzy and why I have such horrible head pressure so he ordered the MRI which revealed the 1.6mm arachnoid cyst on the midline posterior fossa.
Even my psychiatrist thinks this is the cause of my symptoms as this could easily be pressing up against cranial nerves. But since then I have contact a nuerologist (the same one who thought I was crazy) and he actually threatened me on the phone. No joke. I told him how he should have ordered the MRI in March. But instead of owning up he threatened me and told me I was a liar.
Then I have now contacted Dr Hrayr Shahinian (he is the only doctor I respect). And my life is in his hands now. He is the best Nuerosurgeon I know of. And right now he talked to me on the phone as I can not travel. He is 3 hours away.
I told him my situation since the last time I saw him I have a new discovery (the arachnoid cyst). He said that I have 2 cysts.
1. Pineal Gland cyst around 4mm.
2. Arachnoid cyst on midline posterior fossa 16mm.
He asked me what all I had done since my last conversation with him in 2006. I told him I saw famous ENT surgeon Dr Robert Jackler at Standford. I went to UCLA, I went to other ENT's locally including Dr Ian Purcell in Oceancide CA who is a famous doctor too. I told him how no psychiatrist can help me as I have already gone to the famous psychiatric cline (AMEN CLINIC). Dr Hrayr is doing a thorough examination of my situation as he knows my case for many years.
He has since ordered an MRA. I had that done last week. He is going to go over the results of that and give me his final answer in 3 weeks or so. He also prescribed something called diamox (250mg twice daily). I have not really started it yet.
I got the results for the MRA already from the radiology dept. And it shows that everything is fine. I have good pulsating flow and they do see the 1.6cm cyst. But the radiologist has written that everything is awesome. Nothing wrong. And here I am so sick. I am 5'11" 170 lbs. There should be nothing wrong with me. My brother is a former airborne ranger. He can run 5 miles in under 30 minutes. My dads brothers were high ranking officers in the military. My grandfather was shot in Italy as he fought the Nazi in WWII. My dad is a BULL and a very hard working business man. No one has mental illness, vertigo, head pressure, headache, vision problems in my family. I don't know of anyone. And before I became ill I was pretty healthy and athletic.
Now I feel very sad because in my heart I believe the arachnoid cyst in the midline posterior fossa is responsible for my symptoms as it is sitting right next to the brain stem, the cerebellum, and important cranial nerves. Yes the size may not be malignant. But the location is very malignant. Thus I think this justifies surgical intervention.
As for the diamox, I took 1 pill yesterday and it made me sicker. I am still recovering. But I will wait 2 days or so and try taking it again as I want to be 100% sure that it is not working because it is very important that I give it a chance. But if it makes me sick again, I will not take it.
Meanwhile I am on 2.5-3.00 mg of ativan daily (lorazepam) and I take 1200mg of Gabapentin and 50mg of Zoloft.
Other than that, my future is in the hands of Dr. Shahinian. I hope he will understand how my life is just being wasted away.
I know this is an open forum. I don't care I want people to know how much I have suffered.
I prayed and prayed. God is my witness I am a LION in my heart I know it and I wont ever quit. But 10 years of torture. Even after being on all these medications I am still sick and unable to function. As I type this pressure is building in my head. It's hard to even read sometimes.
I pray that if this is God's will then I will carry this to the grave without ever complaining to him. It is very hard to understand why after seeing so many doctors (probably over 100) that noone has really been able to help. This has scarred my soul. My family is also suffering because of this. I have to have them do things for me as I can not leave my house or drive a car. I am right now, having a hard time even sitting in the car and traveling a couple of miles because I get such horrible head pressure and dizziness when I am stimulated.
I have been very ill in the last 6 months. 2 years ago I had an MRI which did not show the arachnoid cyst. Now there is one in my head. And the last 6 months I have been sicker than ever. It makes sense logically that the arachnoid cyst is responsible for all of this. I hope some surgeon reads this too. And offers to help. Otherwise I don't see a future for myself.
Comment Reply
Dear Maria,
thank you so much for taking time to reply to me. I will surely go to Amazon and get your book.
My story is that I am 31 years of age. I have been bound to my bedroom for 10 years now (since age 21). I was punched on the back of my head with a chain at the age of 12. I was knocked out cold and hit the cement on the way down when I got knocked out by some bully from behind while I wasn't looking. Anyway, I got up and was fine. I led a normal life. Until around the age of 20 or 21.
That is when the symptoms slowly started. First it started with dizziness and disequilibrium. For example, if I was in the car and the car would be moving and then it would stop, I would feel like I was still moving. This is a very scary feeling. This dizziness led to anxiety (something no-one in my family has). Then I saw a psychiatrist. He said this is physical. I went to a cardiologist (I also started having rapid heart beats).. and he said go see a psychiatrist.
I went doctor to doctor. The condition got so bad in July of 2002 that I had to quit college. I was only 21 years old. I started suffering from head pressure, vision problems, anxiety and severe balance issues to the point I stopped functioning like a normal human being anymore. Luckily I was a computer programmer and a very good one at that so I was able to work out of my bedroom to earn a living.
Nevertheless, I lived in California (still do). Went to Standford, went to UCLA, even met Dr Hrayr Shahinian at the Cedar Senai Medical Center (twice around 2006). At this time I was 25 years old and all they had found was a 4mm pineal gland cyst.
I went to all kinds of chiropractors, nuerologists, nuerosurgeons, eye doctors, heart doctors, chinese medicine doctors, even cranial doctors. One cranial doctor stuck balloons in my nose and inflated them down my throat pressing up against the sphenoid bone and told me that he was going to change the shape of my cranium. This was called NCR (founded by Dr. Dean Howell). I spent thousands and maybe over 100,000 usd on these doctors. I paid a dentist about 50,000 usd to re-align my bite completely. I spent every dollar I made on the doctors. I even saw multiple psychiatrists.
I even went to the famous Amen clinic in New Port beach and lived the for 2 months before they said they could not help me.
Then in Feb of 2012 I went to a local Oncologist who was offering Hyperbaric oxygen therapy. He said it would help me. After only 1 session I had a horrible reaction and suffered a form of barotrauma. I demanded an MRI immediately he refused (the doctor who gave the barotrauma). I went to a local nuerologist and he refused the MRI also saying I was basically a quack (not in those words of course).
I went to my psychiatrist and told him they wont give me the MRI. He himself, does not know why I am so dizzy and why I have such horrible head pressure so he ordered the MRI which revealed the 1.6mm arachnoid cyst on the midline posterior fossa.
Even my psychiatrist thinks this is the cause of my symptoms as this could easily be pressing up against cranial nerves. But since then I have contact a nuerologist (the same one who thought I was crazy) and he actually threatened me on the phone. No joke. I told him how he should have ordered the MRI in March. But instead of owning up he threatened me and told me I was a liar.
Then I have now contacted Dr Hrayr Shahinian (he is the only doctor I respect). And my life is in his hands now. He is the best Nuerosurgeon I know of. And right now he talked to me on the phone as I can not travel. He is 3 hours away.
I told him my situation since the last time I saw him I have a new discovery (the arachnoid cyst). He said that I have 2 cysts.
1. Pineal Gland cyst around 4mm.
2. Arachnoid cyst on midline posterior fossa 16mm.
He asked me what all I had done since my last conversation with him in 2006. I told him I saw famous ENT surgeon Dr Robert Jackler at Standford. I went to UCLA, I went to other ENT's locally including Dr Ian Purcell in Oceancide CA who is a famous doctor too. I told him how no psychiatrist can help me as I have already gone to the famous psychiatric cline (AMEN CLINIC). Dr Hrayr is doing a thorough examination of my situation as he knows my case for many years.
He has since ordered an MRA. I had that done last week. He is going to go over the results of that and give me his final answer in 3 weeks or so. He also prescribed something called diamox (250mg twice daily). I have not really started it yet.
I got the results for the MRA already from the radiology dept. And it shows that everything is fine. I have good pulsating flow and they do see the 1.6cm cyst. But the radiologist has written that everything is awesome. Nothing wrong. And here I am so sick. I am 5'11" 170 lbs. There should be nothing wrong with me. My brother is a former airborne ranger. He can run 5 miles in under 30 minutes. My dads brothers were high ranking officers in the military. My grandfather was shot in Italy as he fought the Nazi in WWII. My dad is a BULL and a very hard working business man. No one has mental illness, vertigo, head pressure, headache, vision problems in my family. I don't know of anyone. And before I became ill I was pretty healthy and athletic.
Now I feel very sad because in my heart I believe the arachnoid cyst in the midline posterior fossa is responsible for my symptoms as it is sitting right next to the brain stem, the cerebellum, and important cranial nerves. Yes the size may not be malignant. But the location is very malignant. Thus I think this justifies surgical intervention.
As for the diamox, I took 1 pill yesterday and it made me sicker. I am still recovering. But I will wait 2 days or so and try taking it again as I want to be 100% sure that it is not working because it is very important that I give it a chance. But if it makes me sick again, I will not take it.
Meanwhile I am on 2.5-3.00 mg of ativan daily (lorazepam) and I take 1200mg of Gabapentin and 50mg of Zoloft.
Other than that, my future is in the hands of Dr. Shahinian. I hope he will understand how my life is just being wasted away.
I know this is an open forum. I don't care I want people to know how much I have suffered.
I prayed and prayed. God is my witness I am a LION in my heart I know it and I wont ever quit. But 10 years of torture. Even after being on all these medications I am still sick and unable to function. As I type this pressure is building in my head. It's hard to even read sometimes.
I pray that if this is God's will then I will carry this to the grave without ever complaining to him. It is very hard to understand why after seeing so many doctors (probably over 100) that noone has really been able to help. This has scarred my soul. My family is also suffering because of this. I have to have them do things for me as I can not leave my house or drive a car. I am right now, having a hard time even sitting in the car and traveling a couple of miles because I get such horrible head pressure and dizziness when I am stimulated.
I have been very ill in the last 6 months. 2 years ago I had an MRI which did not show the arachnoid cyst. Now there is one in my head. And the last 6 months I have been sicker than ever. It makes sense logically that the arachnoid cyst is responsible for all of this. I hope some surgeon reads this too. And offers to help. Otherwise I don't see a future for myself.
July 27, 2012 - 5:52pmThis Comment
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