MATTHEW 18:20 King James Version
So onward with the real goals in this journey. Helping others as much as possible.
Now, there are three of us with Idiopathic Hypertrophic Cranial Pachymeningitis who have joined together. We communicated on a three way call recently.
The manifestations are so very different for each of us, however, there are some predominant basics that remain the same.
Ray - diagnosed 3 years ago at age 61, main problem was extreme headache, no epileptic seizures, frontal lobe main area of dura involvement, after MRI and CT evaluations, bore holes were used to gain access for biopsy of the dura and surrounding meninges. Many trials of cellcept, and other drugs have been applied. Ray says he feels like a "guinea pig"! Average ER visits per year have been approximately 4, and always required him to be admitted for further tests along with treatment. The ER visits have occurred with his heart, liver, and of course his brain. No craniotomy has ever been performed, but numerous bore holes in further pathology requirements. No tumor has ever manifested. He had to leave his job and is now considered disabled.
Wendy - diagnosed 5 years ago at age 38, main problem parietal lobe, with headache,and epileptic seizures. No tumor or craniotomy. Many bore holes for pathology. Besides the epilepsy being treated with Keppra, she has developed other cranial nerve palsies in her legs with loss of feeling causing her to use a wheel chair for some time. Other drugs used have been corti-steroids. Her average ER visits total to about the same as Ray's, 4. With again being admitted for further testing and treatment. She has remained working with much understanding and assistance from her company.
LIKENESSES:
Wendy, Ray, and I: tinnitus, hearing loss, light sensitivity to eyes, dizziness, migraine, and vertigo. No CSF leaks.
Wendy and Ray: No tumors, Cellcept and corti-steroid treatments. Often times these drugs seem to cause other extreme issues and ER visits. They both have hypertension and weight gain.
Wendy and I: Epilepsy,(treated with Keppra), double vertical vision
Ray and I: Diagnosed at about the same age of 61. Loss of time...not to have been epileptic associated. He recently lost a total of 3 days, the most I have experienced was a little over an hour in Jan of this year. Abnormal EKG's, mine were sinus bradycardia, his were tachycardia. (he has developed a leaky mitral valve) Elevated AST. (he recently had extreme elevation and was in the hospital for 4 days until his status was normal, this required a change in his prescriptions for trying to treat the dura)
DIFFERENTIALS:
I am the only one having had a tumor, craniotomies, infections, aphasia, hypotension, weight loss, and Celiac Disease. (temporal lobe)
Ray is the only one with cardiac disease. (frontal lobe)
Wendy is the only one with extremity nerve palsies. (parietal lobe)
Since I was only diagnosed less than a year ago, my ER visits would be an average of 1 per year thus far. Also, I am thankful that other prescription drugs to try and treat the thickened dura have not been approached.
Ray had stopped trying to do much physically, and then of course that causes depression and other medical issues. Wendy and I have been cautiously exercising. The big concern is our dizziness, so we both have been using the gym cycle to maintain blood flow, heart rate, and muscle improvement. So, yes of course we wanted Ray to get there! He is now becoming more active and actually is feeling much better. He also sees a Psychologist now.
SHARED CONCERNS:
All of us have experienced the fact that many Dr's are wary of our IHCP. All three of us have been somewhat "shunned" due to the unknown process of treatment.
Ray and Wendy have both actually been told by a Dr.,no involvement was wanted. Currently, Wendy seems to be the most undirected of all of us. Most of her Dr. visits at a well known medical clinic are 6 months in waiting. In the meantime she ends up in the ER. Ray was in that venue until, the Dr's decided on a 2 - 3 month appointment time after his last ER visit, at a different well known medical clinic.
I have actually had 2 Dr's reply to me when there is a discussion of IHCP; "I am only a Country Dr.". When I told my neurologist this, I said, "What is that? A veterinarian???" He could not stop laughing! ( for me, it has been tough enough with Celiac Disease)
The last time Ray was in the hospital, his wife was so upset, she called me. She asked me to speak with the intern. He was quite nice with me...said a few things...asked a few things...and then he mentioned he was ordering the MRI. I asked if he was doing this with contrast, he said "no"; so then I told him I did know that the gadolinium contrast is what would show him the full effect of the thickened dura. (hmmm...thanking my Dr. Hanel for this info) So, at least there was one help. The best was talking to Debbie and getting her calmed down.
So, we three are praying together! He is with us!
So onward with the real goals in this journey. Helping others as much as possible.
Now, there are three of us with Idiopathic Hypertrophic Cranial Pachymeningitis who have joined together. We communicated on a three way call recently.
The manifestations are so very different for each of us, however, there are some predominant basics that remain the same.
Ray - diagnosed 3 years ago at age 61, main problem was extreme headache, no epileptic seizures, frontal lobe main area of dura involvement, after MRI and CT evaluations, bore holes were used to gain access for biopsy of the dura and surrounding meninges. Many trials of cellcept, and other drugs have been applied. Ray says he feels like a "guinea pig"! Average ER visits per year have been approximately 4, and always required him to be admitted for further tests along with treatment. The ER visits have occurred with his heart, liver, and of course his brain. No craniotomy has ever been performed, but numerous bore holes in further pathology requirements. No tumor has ever manifested. He had to leave his job and is now considered disabled.
Wendy - diagnosed 5 years ago at age 38, main problem parietal lobe, with headache,and epileptic seizures. No tumor or craniotomy. Many bore holes for pathology. Besides the epilepsy being treated with Keppra, she has developed other cranial nerve palsies in her legs with loss of feeling causing her to use a wheel chair for some time. Other drugs used have been corti-steroids. Her average ER visits total to about the same as Ray's, 4. With again being admitted for further testing and treatment. She has remained working with much understanding and assistance from her company.
LIKENESSES:
Wendy, Ray, and I: tinnitus, hearing loss, light sensitivity to eyes, dizziness, migraine, and vertigo. No CSF leaks.
Wendy and Ray: No tumors, Cellcept and corti-steroid treatments. Often times these drugs seem to cause other extreme issues and ER visits. They both have hypertension and weight gain.
Wendy and I: Epilepsy,(treated with Keppra), double vertical vision
Ray and I: Diagnosed at about the same age of 61. Loss of time...not to have been epileptic associated. He recently lost a total of 3 days, the most I have experienced was a little over an hour in Jan of this year. Abnormal EKG's, mine were sinus bradycardia, his were tachycardia. (he has developed a leaky mitral valve) Elevated AST. (he recently had extreme elevation and was in the hospital for 4 days until his status was normal, this required a change in his prescriptions for trying to treat the dura)
DIFFERENTIALS:
I am the only one having had a tumor, craniotomies, infections, aphasia, hypotension, weight loss, and Celiac Disease. (temporal lobe)
Ray is the only one with cardiac disease. (frontal lobe)
Wendy is the only one with extremity nerve palsies. (parietal lobe)
Since I was only diagnosed less than a year ago, my ER visits would be an average of 1 per year thus far. Also, I am thankful that other prescription drugs to try and treat the thickened dura have not been approached.
Ray had stopped trying to do much physically, and then of course that causes depression and other medical issues. Wendy and I have been cautiously exercising. The big concern is our dizziness, so we both have been using the gym cycle to maintain blood flow, heart rate, and muscle improvement. So, yes of course we wanted Ray to get there! He is now becoming more active and actually is feeling much better. He also sees a Psychologist now.
SHARED CONCERNS:
All of us have experienced the fact that many Dr's are wary of our IHCP. All three of us have been somewhat "shunned" due to the unknown process of treatment.
Ray and Wendy have both actually been told by a Dr.,no involvement was wanted. Currently, Wendy seems to be the most undirected of all of us. Most of her Dr. visits at a well known medical clinic are 6 months in waiting. In the meantime she ends up in the ER. Ray was in that venue until, the Dr's decided on a 2 - 3 month appointment time after his last ER visit, at a different well known medical clinic.
I have actually had 2 Dr's reply to me when there is a discussion of IHCP; "I am only a Country Dr.". When I told my neurologist this, I said, "What is that? A veterinarian???" He could not stop laughing! ( for me, it has been tough enough with Celiac Disease)
The last time Ray was in the hospital, his wife was so upset, she called me. She asked me to speak with the intern. He was quite nice with me...said a few things...asked a few things...and then he mentioned he was ordering the MRI. I asked if he was doing this with contrast, he said "no"; so then I told him I did know that the gadolinium contrast is what would show him the full effect of the thickened dura. (hmmm...thanking my Dr. Hanel for this info) So, at least there was one help. The best was talking to Debbie and getting her calmed down.
So, we three are praying together! He is with us!
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