your time,
enegry and any effort into helping me. I am 501(c)On March 03, 2004 I was diagnosed with an arachnoid cyst in the middle cranial fossa of the left temporal lobe. I had a previous 4-year history of "migrains" although I had never had headaches before then.
March 2004, my PCP ordered the MRI when suddenly my headaches jumped to 24/7 and the Ultram that I was taking for the pain didn't touch it. Dr.Martin (PCP) at first reassured me that the headaches were not caused by a brain abnormality, since a head CT done 4 years earlier was normal. When I told him that a mutual friend who suffers from migrains had an MRI because of an increase in intersity and frequency & that the finding was an "inoperable brain tumor", his jaw hit the floor.
He immediately ordered the head MRI, without contrast.
Suddenly, other medical seemingly unrelated medical problems emerged. High blood pressure, COPD, decreased lunf flow capacity, non-specific cardiac ischemia. The stress test was normal in that, the heart had ischemic before the test began and didn't get worse during the test. The cardiologist couldn't figure out why. "Women", he said. "Hard to figure them out". I was left to surf the web to learn how to read EKGs, what "non-specific ischemia" means, and exactly what conditions can cause the specific changes on the 12-lead EKGs that continued to deteriorate for a month prior to the stress test.
With the help of my PCP, we could rule out almost everything on a list of about 7 conditions. The only thing left was CNS disease.. It was May before my PCP got the mri report . A/C. 2.5cm x 2.6cm x ???cm. (When you see the pictures you will understand why a 3rd dimension was not determined). My neurologist could not see me for two months. He did have a new man in his office who could see me in two weeks. I spent those weeks searching the web for any information that I could about arachnoid cysts.
It was clear to me that the A/C was causing my headache and that surgery was necessary. The only decisions to be made were by what method and by whom. I live in the Appalachian Mountains of North Carolina, USA, in a rural town, population 850.
May, 2004, I traveled 17 miles to Boone, NC to show Dr. Menard, my new neuro, my mri. He took the films into another room for a few minutes, came back into the exam room & declaired the A/C congenital & asymptomatic. Furthermore, they could not be the cause of my headache. He put me on several antisezure medications (can't remember them all) and told me to come back in 3 monthes. No prescription for pain.
Let me emphasize, that this headache has been exactly where the A/C is located, behind my left eye. As a matter of fact, over a year ago, my opthomologist documented hypertensive retinopathy and a small circular retinal tear in my left eye.
June 29, 2004 This year the eye dr. finds some av nicking (increases vascular pressure) and a "red spot" (=bleed) where a vessle had blown because of increased pressure. My eyes are now crossed & I have scattered positive scotoma (blind spots surrounded by normal seeing areas of vision) on the retina. This "positive" scotoma can be caused by lesions on the optic tract or other types of injuy (pressure, etc..) to the optic tract.
July 08, 2004 2ns opinion with a neurologist in Hickory, NC. She didn't even look at the mri films. She automatically declared the A/C as congenital & asymptomatic. Furthermore, her physical exam was brutal and exreemely painful. When she performed the Babinski teat, she jabbed this 100-penny nail into my foot & dragged it down the sole of my foot as hard as she could. "If it doesn't hurt, then it isn't being done right", she declared. What a nazi..
Within 2 weeks I was bedridden with 10+ pain in my head and no response from phone calls to the neurologist. The headache is steady, not pounding, sometimes with increasing pressure that includes my eye, left ear, and tension around my eyeball My husband called Dr.Martin, who told him to take me to the ER at the Johnson City Medical Center in Tennessee, a teaching hospital. . Dr. Martin would call in orders, including oligoclonal bands, intercranial pressure test, and others obtained from a spinal tap. Too bad that the ER Doc was a putz. He tried 4 times to get a tap & failed so radiology had to do it. They only got about 2mls of CSF; not enough for the MS test & forget the pressure test. I left with no meds for pain, my husband treating me in a condecending manner, & the ER doc thinking that I was there seeking drugs. The next day, Dr.Martin saw me & gave me something with codine in it. It didn't work too well. One week later he gave me 5 delaudid capsules in hopes of breaking the headache, zanaflex,& salsalate. Didn't work. I just gave up.
Four weeks later, the day before I saw Dr. Martin again, I called Dr.Menard for help. I needed either a painkiller or an adjustment of the medication that he had me on (toporol). He never called me back. When I saw Dr. Martin I asked him for antidepressants. My head hurt so badly that I just wanted to kill myself. The only thing that had stopped me was the faces of my children that I saw in my mind whenever I planned it. I just couldn't hurt them like that. Freddy asked if I had a plan to kill myself. I said "Sure. Put a gun in my mouth & blow a hole in my head. This damned cyst is big & trying to get out & I would feel so much better if I just let it out." I was not rational. He added lexapro & tylox to my medicine chest. I took 4 tylox in 3 days & the headache was gone. Now while I am seeing Freddy Martin,MD, every 4 weeks, I am seeing Dr.Menard every 3 months.
July01, 2004 The next time that I see Dr.Menard, the headaches are better, but I have developed more neurological symptoms. I have to force him to listen to me. I have kept a diary and have seen the opthomologist , who had repeatedly said " Good thing you're going to see your neurologist soon!" I cannot remember words, even if I can see the object that I wish to name. I lurch from left to right when I walk. I lose my hearing periodically. Sometimes what people say to me makes no sense whatsoever. Sometimes I have no control over my bowels or bladder. At least 3 times a week, I topple over, loose my balance & fall. He finally gets it. He orders another mri - this one with contrast. Here's a script for Ultram. See you in 3 months.
Aug.01 2004 I get the mri. They give me a copy of the films so that I don't have to drive to Tennessee to come back for them. I get a message from the neuros office via my 13 yr old son about the mri. "Nothing has changed" In the meantime, the headaches have picked up but not so bad as to require Tylox. I fill the prescription fot Ultram. I have read the mri report & it goes like this:
"Brain appears of normal signal intensity without focal abnormalities. There is no evidence of peripheral infarcts or space occupying lesions. There is a septated fluid collection noted in the anterior left middle cranial fossa, 2.7cm x 2.5cm with mild mass effect on the anterior tip. This appears to represent an arachnoid cyst however there is septation present and some of this collection may be in the subdural space rather than the subarachnoid space making this slightly atypical for an arachnoid cyst. There also appears to be some mild fluid enhancement of the septation. This does however appear to have fluid consistant with CSF density and has not changed in size when compared to the outside examination. No additional abnormalities are appreciated. Impression: Septated fluid collection in the left middle cranial fossa with mild mass effect in the left temperal lobe unchanged from the previous examination of 3-30-04. There is some mild enhancement of the septation after the administration of Gadolinium and also septations are fairly unusual for a simple arachnoid cyst, therefore some of this may be adhesions within an arachnoid cyst versus some elevation of the dural with separate epidural collection as well. Followup is recommended."
Sept. 20, 2004 Hurricain Ivan has swept through here after Francis, leaving flood & downed trees & power lines. While trying to clear branches from downed tree, a large limb breaks loose & knocks me flat on my back to the ground. I am stunned, afraid that I have injured my sekf when my head smacked the ground. I am pinned down by this limb until I figure how to wiggle out from under it in the muck. The next day I cannot move my neck. The day after that, I cannot get out of bed. When I move, I feel electricity coming out of each nerve in my spine. I suffer headaches & sore sacrum for 4 weeks, especially when I sit, or lie down.
October04,2004 Time to see Medard. I have a perfectly normal brain, a congenital & asymptomatic arachnoid cyst, the mri report is normal, everyone has increased brain pressure when they sit down, . Here, have some prednosone,see you in 3 months.
Oct. 25,2004. I see an ENT for allergey testing. I am allergic to milk, eggs, all dairyproducts, soy, dogs, cats, birds, 1/3 of all the trees in these mountains & every wildflower that I love. Do you get that soy is in every processed food in the world?
Oct 28,2004 I found a pediatric radiologist to interpret my mri report. He pretty clearly states that the septated cyst has cavity within it that has pressed up against the dura and is applying pressure to the brain surface in that area. This can be a problem & he is imagining that they are going to be taking care of it rather quickly. I need to see a neurosurgeon.
Nov.05,2004 I see Dr.Martin & give him an update, both of me & Dr.Menard's visit. I have a few names that I have received from former patients at Duke. I would rather go to California to see Catherine's doctor, but we are penniless at the moment. Duke is instate & covered by our insurance. (I hope)
Hope is a 4-letter word. I already know what will happen. Either they won't see me, or if they do, they will say that it is nothing to worry about., or asymptomatic, or some such thing. But I have to give the locals a chance if I want my husband's support. He hasn't said that, but I know that he's thinking it.
Rita
*UPDATE*
My name is Rita. I am 52 years old, married to a mathematician, currently an unemployed medical technologist, and mother of four boys: Chris,16; Mike,14; Patrick,11; and Matthew, 10.
On March 03, 2004 I was diagnosed with an arachnoid cyst in the middle cranial fossa of the left temporal lobe. I had a previous 4-year history of "migrains" although I had never had headaches before then.
March 2004, my PCP ordered the MRI when suddenly my headaches jumped to 24/7 and the Ultram that I was taking for the pain didn't touch it. Dr.Martin (PCP) at first reassured me that the headaches were not caused by a brain abnormality, since a head CT done 4 years earlier was normal. When I told him that a mutual friend who suffers from migrains had an MRI because of an increase in intersity and frequency & that the finding was an "inoperable brain tumor", his jaw hit the floor.
He immediately ordered the head MRI, without contrast.
Suddenly, other medical seemingly unrelated medical problems emerged. High blood pressure, COPD, decreased lunf flow capacity, non-specific cardiac ischemia. The stress test was normal in that, the heart had ischemic before the test began and didn't get worse during the test. The cardiologist couldn't figure out why. "Women", he said. "Hard to figure them out". I was left to surf the web to learn how to read EKGs, what "non-specific ischemia" means, and exactly what conditions can cause the specific changes on the 12-lead EKGs that continued to deteriorate for a month prior to the stress test.
With the help of my PCP, we could rule out almost everything on a list of about 7 conditions. The only thing left was CNS disease.. It was May before my PCP got the mri report . A/C. 2.5cm x 2.6cm x ???cm. (When you see the pictures you will understand why a 3rd dimension was not determined). My neurologist could not see me for two months. He did have a new man in his office who could see me in two weeks. I spent those weeks searching the web for any information that I could about arachnoid cysts.
It was clear to me that the A/C was causing my headache and that surgery was necessary. The only decisions to be made were by what method and by whom. I live in the Appalachian Mountains of North Carolina, USA, in a rural town, population 850.
May, 2004, I traveled 17 miles to Boone, NC to show Dr. Menard, my new neuro, my mri. He took the films into another room for a few minutes, came back into the exam room & declaired the A/C congenital & asymptomatic. Furthermore, they could not be the cause of my headaches. He put me on several antisezure medications (can't remember them all) and told me to come back in 3 monthes. No prescription for pain.
Let me emphasize, that this headache has been exactly where the A/C is located, behind my left eye. As a matter of fact, over a year ago, my opthomologist documented hypertensive retinopathy and a small circular retinal tear in my left eye.
June 29, 2004 This year the eye dr. finds some av nicking (increases vascular pressure) and a "red spot" (=bleed) where a vessle had blown because of increased pressure. My eyes are now crossed & I have scattered positive scotoma (blind spots surrounded by normal seeing areas of vision) on the retina. This "positive" scotoma can be caused by lesions on the optic tract or other types of injuy (pressure, etc..) to the optic tract.
July 08, 2004 2nd opinion with a neurologist in Hickory, NC. She didn't even look at the mri films. She automatically declared the A/C as congenital & asymptomatic. Furthermore, her physical exam was brutal and exremely painful. When she performed the Babinski test, she jabbed this 100-penny nail into my foot & dragged it down the sole of my foot as hard as she could. "If it doesn't hurt, then it isn't being done right", she declared. What a nazi..
Within 2 weeks I was bedridden with 10+ pain in my head and no response from phone calls to Dr.Menard. The headache is steady, not pounding, sometimes with increasing pressure that includes my eye, left ear, and tension around my eyeball My husband called Dr.Martin, who told him to take me to the ER at the Johnson City Medical Center in Tennessee, a teaching hospital. Dr. Martin would call in orders, including oligoclonal bands, intercranial pressure test, and others obtained from a spinal tap. Too bad that the ER Doc was a putz. He tried 4 times to get a tap & failed so radiology had to do it. They only got about 2mls of CSF; not enough for the MS test & forget the pressure test. I left with no meds for pain, my husband treating me in a condecending manner, & the ER doc thinking that I was there seeking drugs. The next day, Dr.Martin saw me & gave me something with codine in it. It didn't work too well. One week later he gave me 5 delaudid capsules in hopes of breaking the headache, zanaflex,& salsalate. Didn't work. I just gave up.
Four weeks later, the day before I saw Dr. Martin again, I called Dr.Menard for help. I needed either a painkiller or an adjustment of the medication that he had me on (topamax). He never called me back. When I saw Dr. Martin I asked him for antidepressants. My head hurt so badly that I just wanted to kill myself. The only thing that had stopped me was the faces of my children that I saw in my mind whenever I planned it. I just couldn't hurt them like that. Freddy asked if I had a plan to kill myself. I said "Sure. Put a gun in my mouth & blow a hole in my head. This damned cyst is big & trying to get out & I would feel so much better if I just let it out." I was not rational. He added lexapro & tylox to my medicine chest. I took 4 tylox in 3 days & the headache was gone. Now while I am seeing Freddy Martin,MD, every 4 weeks, I am seeing Dr.Menard every 3 months.
July01, 2004 The next time that I see Dr.Menard, the headaches are better, but I have developed more neurological symptoms. I have to force him to listen to me. I have kept a diary and have seen the opthomologist , who had repeatedly said " Good thing you're going to see your neurologist soon!" I cannot remember words, even if I can see the object that I wish to name. I lurch from left to right when I walk. I lose my hearing periodically. Sometimes what people say to me makes no sense whatsoever. Sometimes I have no control over my bowels or bladder. At least 3 times a week, I topple over, loose my balance & fall. He finally gets it. He orders another mri - this one with contrast. Here's a script for Ultram. See you in 3 months.
Aug.01 2004 I get the mri. They give me a copy of the films so that I don't have to drive to Tennessee to come back for them. I get a message from the neuros office via my 13 yr old son about the mri. "Nothing has changed" In the meantime, the headaches have picked up but not so bad as to require Tylox. I fill the prescription fot Ultram. I have read the mri report & it goes like this:
"Brain appears of normal signal intensity without focal abnormalities. There is no evidence of peripheral infarcts or space occupying lesions. There is a septated fluid collection noted in the anterior left middle cranial fossa, 2.7cm x 2.5cm with mild mass effect on the anterior tip. This appears to represent an arachnoid cyst however there is septation present and some of this collection may be in the subdural space rather than the subarachnoid space making this slightly atypical for an arachnoid cyst. There also appears to be some mild fluid enhancement of the septation. This does however appear to have fluid consistant with CSF density and has not changed in size when compared to the outside examination. No additional abnormalities are appreciated. Impression: Septated fluid collection in the left middle cranial fossa with mild mass effect in the left temperal lobe unchanged from the previous examination of 3-30-04. There is some mild enhancement of the septation after the administration of Gadolinium and also septations are fairly unusual for a simple arachnoid cyst, therefore some of this may be adhesions within an arachnoid cyst versus some elevation of the dural with separate epidural collection as well. Followup is recommended."
Sept. 20, 2004 Hurricain Ivan has swept through here after Francis, leaving flood & downed trees & power lines. While trying to clear branches from downed tree, a large limb breaks loose & knocks me flat on my back to the ground. I am stunned, afraid that I have injured my self when my head smacked the ground. I am pinned down by this limb until I figure how to wiggle out from under it in the muck. The next day I cannot move my neck. The day after that, I cannot get out of bed. When I move, I feel electricity coming out of each nerve in my spine. I suffer headaches & sore sacrum for 4 weeks, especially when I sit, or lie down.
October04,2004 Time to see Medard. I have a perfectly normal brain, a congenital & asymptomatic arachnoid cyst, the mri report is normal, everyone has increased brain pressure when they sit down, . Here, have some prednosone,see you in 3 months.
Oct. 25,2004. I see an ENT for allergey testing. I am allergic to milk, eggs, all dairyproducts, soy, dogs, cats, birds, 1/3 of all the trees in these mountains & every wildflower that I love. Do you get that soy is in every processed food in the world?
Oct 28,2004 I found a pediatric radiologist to interpret my mri report. He pretty clearly states that the septated cyst has cavity within it that has pressed up against the dura and is applying pressure to the brain surface in that area. This can be a problem & he is imagining that they are going to be taking care of it rather quickly. I need to see a neurosurgeon.
Nov.05,2004 I see Dr.Martin & give him an update, both of me & Dr.Menard's visit. I have a few names that I have received from former patients at Duke. I would rather go to California to see Catherine'sdoctor, but we are penniless at the moment. Duke is instate & covered by our insurance. (I hope)
Hope is a 4-letter word. I already know what will happen. Either they won't see me, or if they do, they will say that it is nothing to worry about., or asymptomatic, or some such thing. But I have to give the locals a chance if I want my husband's support. He hasn't said that, but I know that he's thinking it.
Third week of November, 2004. I see Dr. Steven Tatter at Wake Forest at UNC in Winston-Salem. Same dx. A/C. Not causing headaches. I seem to be perfectly fine neurologically, except, cranial nerve VIII, responsible for hearing, is not functioning correctly.
Jan 7, 2005. Dr. Menard ignores the hearing problem. I have developed monoclonal spasms that occur whenever I lie on my right side. His response is to take my Klonipin earlier before bed. I have never had spasms before. These symptoms are going to comtinue and worsen until my entire life will be nothing but this condition. Or worse.
Read Rita's Blog here.
