Thursday, February 27, 2014
SPEECH THERAPY
I have had three appointments with my speech pathologist, Mary Spremulli, MA, CCC/SLP. She is assisting me with my problems of "impaired prosody of speech" and "word retrieval". Mary's professionalism and her great personality have been so beneficial.
Through this short span of 3 weeks time, she has added so many helpful APPS, great homework assignments, and levels of growth planning for the next year. In fact, I am completing a homework assignment with Mary, as I write this. The assignment is to minimize the amount of words, and still get to the point.
To end this writing, I want to thank all of my family, friends, professionals, and our Lord for all of the continual healing and support.
Thursday, February 13, 2014
DEFINITION OF CHRONIC IDIOPATHIC HYPERTROPHIC CRANIAL PACHYMENINGITIS
Many of you have asked and inquired....just what is this disease....and that is a very good question. From what has been explained and seen, the following is the "best" described by a Dr. in India. Keep in mind that this disease is so rare and difficult to prove. Many other diseases can cause underlying dura mater brain problems, so the process is long. Here is her explanation:
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2002;volume=50;issue=1;spage=4;epage=5;aulast=Misra
Idiopathic hypertrophic cranial pachymeningitis (IHCP) is a chronic fibrosing inflammatory condition of dura mater resulting in thickening of dura.[1] It has a non specific clinical picture comprising headache, vomiting, cranial nerve palsy, ataxia, raised intracranial pressure and focal neurological deficit. These symptoms and signs in IHCP are due to entrapment of cranial nerves, occulsion of CSF flow, venous sinuses and rarely arteries. The diagnosis of IHCP is based on excluding a large number of causes such as inflammatory (tuberculosis, fungal, Lyme's disease, syphillis, HTLV), collagen vascular disorders (rheumatoid arthritis, Wegner's granulomatosis, systemic lupus erythematosus, mixed connective tissue disease), multifocal fibrosclerosis, neoplasia (carcinoma, lymphoma, meningioma en plaque) and miscellaneous disorders such as sarcoidosis, hemodialysis, mucopolysaccharidosis and intrathecal drug administration.[1]
The attention to IHCP has been drawn by the availability of CT and MRI scans, following which more and more cases have been described in the recent years. In this issue of Neurology India, 4 patients with IHCP have been reported by Sylaja et al[2] and 3 patients with hypertrophic cranial pachymeningitis (HCP) by Prabhakar et al.[3] The cases reported by Sylaja et al had undergone meningeal biopsy. In HCP, CT scan shows thickened hyperdense dura involving tentorium, falx and basal meninges which enhance intensely on contrast administration. On MRI, thickened dura meter appears isointense or hypointense on T1WI and hyperintense on T2WI sequence which is best seen in coronal or saggittal sections. There is curvilinear enhancement of the thickened meninges following gadolinium administration. In pachymeningitis, curvilinear contrast enhanced segments underneath the inner table of skull do not follow the gyral convolution which is a feature of leptomeningitis.[4] Hypertrophic pachymeningitis may be segmental or diffuse; the former may be confused with tumor metastasis, meningioma en plaque or granuloma. Intracranial hypotension also results in similar MRI picture, therefore, it should be differentiated from IHCP.[1]
The radiological findings although characteristic of HCP, may not reveal the underlying etiology. Presence of associated features such as granuloma, infarction, sinusitis etc may suggest an underlying cause. Exclusion of several underlying causes is an essential feature for the diagnosis of IHCP. Every effort should be made to exclude infections; as infections may flare up following corticosteroid or immuno-suppressive therapy used for the treatment of these patients.[5] The patients with IHCP may be associated with myocarditis due to sharing of common etiological factor, which results in arrhythmias and sudden cardiac death. Electrocardio-gram, therefore, should be carried out in all the patients with IHCP.[6]
Meningeal biopsy is essential for dignosing IHCP for excluding other causes. There are reports of Pseudomonas aeruginosa,[7] Proprionibacterium acnes[8] and otitis media producing HCP. In the case with otitis media, although the organism could not be grown, there were microabscesses and the patient responded to antibiotics.[9] It is, therefore, also important to culture the meningeal biopsy for bacteria. In a study on the role of meningeal biopsy in 25 patients with meningitis; the meningeal biopsy was diagnostic in 5 patients only, revealing tuberculosis in 1, neoplasia in 3 and granulomatous angiitis in 1 patient. In 17 patients, the biopsy, although abnormal, it could neither identify the cause nor alter the management of the patients.[10] The meningeal biopsy should be obtained from the enhancing area to increase the diagnostic yield. In a study on 37 patients with chronic meningitis, definitive diagnosis by meningeal biopsy was possible in 39% which increased to 80%, if the biopsy was obtained from enhancing area; whereas the biopsy from non enhancing area was positive in 9% patients only.[11] In some patients, a sequential biopsy may be necessary if the initial biopsy is inconclus ive or patient is deteriorating. In this study, a repeat biopsy was carried out in 4 patients and revealed adenocarinoma, sarcoidosis, demyelinating disease and chronic inflammation in 1 patient each.[11] The patient diagnosed with IHCP should be closely followed. We have managed a patient with HCP and followed him up without giving corticosteroid. Six months later, he developed tubercular cervical lymphadeno-pathy.
The diagnosis of IHCP should be made with due precaution especially in our country where infections are common. Attempt should be made to exclude other underlying conditions before prescribing corticosteroid or other immunosuppressant. In view of limitation of radiology and meningeal biopsy, the patient should be closely monitored and any deterioration should lead to review of the patient and even repeat biopsy.
So, yes, this is quite the "unknown". My greatest concern is to protect my family if at all possible. The constant tests will hopefully reveal if this is genetic in any way. If so, then my family can be made aware of these possible issues far in advance of any tumor affecting their brain. And in the Research, hopefully this will help those who also have this rare disease in process. Mine was so long in showing any specific symptoms, that it advanced to the tumor stage, usually this is not the case. Generally speaking, if known, I could have been treated far in advance before requiring a craniotomy.
When I took my medical courses in becoming a PCT (Patient Care Technician), one of the greatest phrases from my teachers was; "Patient Assessment" is the most necessary process. My current assessment is "good". Each day is a gift, and I am so thankful to carry on.
I pray constantly about His Purpose and that I will follow His course that is set before me properly.
http://www.neurologyindia.com/article.asp?issn=0028-3886;year=2002;volume=50;issue=1;spage=4;epage=5;aulast=Misra
Idiopathic hypertrophic cranial pachymeningitis (IHCP) is a chronic fibrosing inflammatory condition of dura mater resulting in thickening of dura.[1] It has a non specific clinical picture comprising headache, vomiting, cranial nerve palsy, ataxia, raised intracranial pressure and focal neurological deficit. These symptoms and signs in IHCP are due to entrapment of cranial nerves, occulsion of CSF flow, venous sinuses and rarely arteries. The diagnosis of IHCP is based on excluding a large number of causes such as inflammatory (tuberculosis, fungal, Lyme's disease, syphillis, HTLV), collagen vascular disorders (rheumatoid arthritis, Wegner's granulomatosis, systemic lupus erythematosus, mixed connective tissue disease), multifocal fibrosclerosis, neoplasia (carcinoma, lymphoma, meningioma en plaque) and miscellaneous disorders such as sarcoidosis, hemodialysis, mucopolysaccharidosis and intrathecal drug administration.[1]
The attention to IHCP has been drawn by the availability of CT and MRI scans, following which more and more cases have been described in the recent years. In this issue of Neurology India, 4 patients with IHCP have been reported by Sylaja et al[2] and 3 patients with hypertrophic cranial pachymeningitis (HCP) by Prabhakar et al.[3] The cases reported by Sylaja et al had undergone meningeal biopsy. In HCP, CT scan shows thickened hyperdense dura involving tentorium, falx and basal meninges which enhance intensely on contrast administration. On MRI, thickened dura meter appears isointense or hypointense on T1WI and hyperintense on T2WI sequence which is best seen in coronal or saggittal sections. There is curvilinear enhancement of the thickened meninges following gadolinium administration. In pachymeningitis, curvilinear contrast enhanced segments underneath the inner table of skull do not follow the gyral convolution which is a feature of leptomeningitis.[4] Hypertrophic pachymeningitis may be segmental or diffuse; the former may be confused with tumor metastasis, meningioma en plaque or granuloma. Intracranial hypotension also results in similar MRI picture, therefore, it should be differentiated from IHCP.[1]
The radiological findings although characteristic of HCP, may not reveal the underlying etiology. Presence of associated features such as granuloma, infarction, sinusitis etc may suggest an underlying cause. Exclusion of several underlying causes is an essential feature for the diagnosis of IHCP. Every effort should be made to exclude infections; as infections may flare up following corticosteroid or immuno-suppressive therapy used for the treatment of these patients.[5] The patients with IHCP may be associated with myocarditis due to sharing of common etiological factor, which results in arrhythmias and sudden cardiac death. Electrocardio-gram, therefore, should be carried out in all the patients with IHCP.[6]
Meningeal biopsy is essential for dignosing IHCP for excluding other causes. There are reports of Pseudomonas aeruginosa,[7] Proprionibacterium acnes[8] and otitis media producing HCP. In the case with otitis media, although the organism could not be grown, there were microabscesses and the patient responded to antibiotics.[9] It is, therefore, also important to culture the meningeal biopsy for bacteria. In a study on the role of meningeal biopsy in 25 patients with meningitis; the meningeal biopsy was diagnostic in 5 patients only, revealing tuberculosis in 1, neoplasia in 3 and granulomatous angiitis in 1 patient. In 17 patients, the biopsy, although abnormal, it could neither identify the cause nor alter the management of the patients.[10] The meningeal biopsy should be obtained from the enhancing area to increase the diagnostic yield. In a study on 37 patients with chronic meningitis, definitive diagnosis by meningeal biopsy was possible in 39% which increased to 80%, if the biopsy was obtained from enhancing area; whereas the biopsy from non enhancing area was positive in 9% patients only.[11] In some patients, a sequential biopsy may be necessary if the initial biopsy is inconclus ive or patient is deteriorating. In this study, a repeat biopsy was carried out in 4 patients and revealed adenocarinoma, sarcoidosis, demyelinating disease and chronic inflammation in 1 patient each.[11] The patient diagnosed with IHCP should be closely followed. We have managed a patient with HCP and followed him up without giving corticosteroid. Six months later, he developed tubercular cervical lymphadeno-pathy.
The diagnosis of IHCP should be made with due precaution especially in our country where infections are common. Attempt should be made to exclude other underlying conditions before prescribing corticosteroid or other immunosuppressant. In view of limitation of radiology and meningeal biopsy, the patient should be closely monitored and any deterioration should lead to review of the patient and even repeat biopsy.
 |
When I took my medical courses in becoming a PCT (Patient Care Technician), one of the greatest phrases from my teachers was; "Patient Assessment" is the most necessary process. My current assessment is "good". Each day is a gift, and I am so thankful to carry on.
I pray constantly about His Purpose and that I will follow His course that is set before me properly.
Wednesday, February 12, 2014
TRACKS ON A CHRONIC SUBSTANCE
It is now approaching Valentine's Day and so much has happened since the last completed blog.
More appointments, tests, and new alliances have been applied.
Existing issues:
Celiac Disease- gluten free diet
Focal epilepsy - treatment with Keppra
Hearing Loss,Sensorineural
No driving permitted per Florida Law and epilepsy issues
Aphasia with limited speech issues and word memory problem
New MRI, CT, and bloodwork
There is a "grief process" when any immense changes arise of track changes on your "railway trail". I look at the locomotive as my ongoing power to move forward and press on....and the caboose on my track with the efforts of remaining strong. And in the middle...several types of needful cars, constantly requiring movement. My journey here is committed to His purpose...the eternal ticket was purchased for me by my Savior.
The month of January covered the latest appointments. It was composed of follow-ups with my dearest of Dr's for confirmation of improvement, but also committment to discern the unknown. A new Dr. was brought into my IHCP. His understanding was not only professional but supportive. After the composition of events and medical presented, he made a very important insight comment:
His statement moved my locomotive and gave me more energy than I had felt for awhile. Yes, the focus needed altering..my grief was lessened and my adaptations looming ahead.
More appointments, tests, and new alliances have been applied.
Existing issues:
Celiac Disease- gluten free diet
Focal epilepsy - treatment with Keppra
Hearing Loss,Sensorineural
No driving permitted per Florida Law and epilepsy issues
Aphasia with limited speech issues and word memory problem
New MRI, CT, and bloodwork
There is a "grief process" when any immense changes arise of track changes on your "railway trail". I look at the locomotive as my ongoing power to move forward and press on....and the caboose on my track with the efforts of remaining strong. And in the middle...several types of needful cars, constantly requiring movement. My journey here is committed to His purpose...the eternal ticket was purchased for me by my Savior.
The month of January covered the latest appointments. It was composed of follow-ups with my dearest of Dr's for confirmation of improvement, but also committment to discern the unknown. A new Dr. was brought into my IHCP. His understanding was not only professional but supportive. After the composition of events and medical presented, he made a very important insight comment:
"We do not focus on the
unknown... that is not the purpose of our Creation....when these situations
occur...we just need to adapt."
His statement moved my locomotive and gave me more energy than I had felt for awhile. Yes, the focus needed altering..my grief was lessened and my adaptations looming ahead.
I received a very special gift from my siblings....a new IPad. Little did I realize how valuable a tool this would become. At first I thought, I already have my computer, but little did I realize the help of new APPS at that time. My niece, has assisted me more than once in properly setting up my needs. We have added word games, Lumosity, calendars, word notes to assist in my memory, and so much more. Yes, a new cargo car has been added to my track.
Additionally, I have joined an Aphasia Support group, and now have my first Speech Pathology appointment tomorrow. I have realized after discussion with my neurologist's nurse, how fortunate I am in all of this. She was a bit harsh when she reminded me how many of their patients wish they could do the many things I am capable of doing. I was properly admonished, lovingly and yet approachably.
My guided train is on track today, and will continue to stay "full steam ahead". The Lord is in constant contact with me to heal, and I will hear from those he has supplied for further treatment when it is His timing.
A Promise from our Lord:
John 10:28-30
"And I give unto them eternal life; and they shall never perish, neither shall any man pluck them out of my hand. My Father, which gave them me, is greater than all; and no man is able to pluck them out of my Father's hand. I and my Father are one."
Subscribe to:
Posts (Atom)