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."
Wednesday, November 27, 2013
TUMOR REMOVED...NOT A CAVERNOMA
Surgery is completed! Surprise, however, this was NOT A Cavernoma, but is indicated to be a Meningioma. We are still waiting for the pathology report to figure out the total situation. It will take some time according to the Mayo Clinic. In the meantime, I am home now just enjoying there is no tumor in my brain anymore!!
The care at ICU was amazing. I was able to meet so many people who were there for one reason or another. It made me so aware that many people would have perhaps wanted my situation rather than the one they were in. Someone actually did not make it and died just before my family was allowed to come visit me in my room....I could tell my husband was upset by this.
To share this is difficult and yet so important... There are some who constantly fill my heart...my husband, my daughters,my siblings, my nieces, my nephews, my cousins....and of course my Mom. I attended Bible College many years ago, and so many friends have constantly remembered those young days when we sang together, shared our testimonies, and prayed so often for God's Guidance of our lives. Yesterday, Thanksgiving Day, my daughters,Amy Weires and TreeandSherry Marti finally shared the "special information" that I could not remember from my brain surgery, but needed to! They informed me that I told them about seeing my daughter, Geri Ann in Heaven, my mother, my father, my brother, my sister and many other family members in Heaven. That Jesus.... told me I could not stay...I had to come back because He needed me to do something still. I don't pretend to understand all of God's total plan, I read the Bible..I pray..I Believe, but this much I know..."this is not all there is"...this is just a wisp in this world..my daughter's told me that I had wanted to stay in Heaven,(this seemed to hurt them of course because they didn't want me to die) but Jesus said it was "not my time". I guess I was really asking the Nurses in ICU about this message...and then my daughter's were allowed to talk to me, only two people at a time..but the Nurses were not with me during surgery, only after...was this what is referred to as NDE (Near Death Experience)??? I have no real idea...
I was able to share the love of our Lord and Savior with the nurses who were constantly amazed at how much better I was doing. I just could not take oxycodone...ugh!! I really did not want to take Tylenol either, it really never helps me, but I let them put it in my IV...just so they didn't worry. I do so much better with Ibuprofin overall, and am still taking that as allowed to ease the pain in my head, I do have headaches right now, but ummmm...it has only been one week. Next week I go to have the staples removed and then I can wash my hair a little bit better.
My family has been so supportive. Between my Mom, my husband, my siblings, my children....and a whole slew of nieces, nephews, cousins, and friends...my heart is so full of love and joy! Tomorrow is Thanksgiving Day and the plans to be at my daughter's home will bring lots of good times!
My Neuro-Surgeon, Dr. Ricardo Hanel, was the best anyone could have at Mayo Clinic. He came to see me everyday making sure I was doing well.....and then asked me just 3 days after surgery if I would like to go home....of course I said "yes"!! Everyday, I have been getting stronger and feel so much better. The following were parts that were in the process:
1. Blood work to make sure all was well for surgery
2. IV's and more IV's
3. The beautiful surgery "dress"
4. A wonderful oxygen mask and then sleep
5. My head was infused into a "holder"
6. The left head was at the top of the holder
7. An 8 inch cut was made from the left ear up to the top of the head
8. They took out the bone
9. The brain was opened and then the fun stuff to take out the tumor took two MRI's to do it completely
10. Part of the good brain cells had to be taken out to get the tumor out
11. Everything was then put back together with new glue and staples
12. I do not remember talking, but guess I did according to my husband and family
13. Somehow I was given a medicine that had gluten in it which caused a problem with my left arm
14. My speech is difficult, I have forgotten some names and words, but eventually will get better
15. No lifting anything over 10 lbs for 3 weeks
16. Showers and tubs are okay and I have enjoyed them
17. My appetite is fine and I am quite thirsty as well
18. All the things that need to work, do
19. Writing is so much easier than talking
20. After having received the biopsies, we aren't done yet...this is chronic
We will always be so grateful for the extensive great work given to us on this situation that could have been far worse. Have applied for Social Security Disability, but not sure if it will be allowed as yet. My reports are not complete, however, I will have to continue taking Keppra for anti-seizure for quite awhile yet and not allowed to drive. Will probably need Speech Therapist as well. That being said, don't think my job will be able to be done properly since I had been involved with Customer Service.
We have received the "Final Report" concerning the Biopsy...evidently this tumor is very rare. The name given is "CHRONIC HYPERTROPHIC PACHYMENINGITIS" or Idiopathic Hypertrophic Pachymeningitis. They state that the findings are not specific and require clinical correlation. Therefore, once I have been allowed to heal from the craniotomy, there are more tests to follow, including Hematology.
After receiving this biopsy information, my husband and I had time to discuss the future expectations. We were told by our neuro surgeon that this type of tumor can re-occur. Between that information, my delays in obtaining a good enough speech to do my job, and my inability to drive, we decided it was time for me to quit my job. It was not going to be fair for my Manager to continue waiting for me to get to the level needed to perform my position. Knowing that at this time of year, when the company hires additional help for Christmas, his availability to hire a good replacement should be easier than any other time. It was so difficult to call him and let him know, but he fully understood. My sister-in-law took me to the office to collect my personal things that had been there since September 24th. While there, many of my friends and co-workers came to give me hugs. I had forgotten so many of their names...it hurt my heart. They were understanding, but I felt so bad to have forgotten.
I developed a constant drainage from the lowest part of my incision 2 weeks and one day after the surgery. It is light yellow, I called Mayo Clinic to find out how long this drainage should last. Immediately, they wanted to see me! When there, I had a CT Cisternogram to search for a possible CSF leak. Now, I cannot lie...this was the most painful test even more painful that the brain surgery itself that I have ever had! Thank God it was only about fifteen minutes of the "worst". I prayed so much on that table asking the Lord to help me through the pain and not letting it be a problem with CSF. The nurse let me "press" her hands, probably felt more like a "vice"..she was so sweet. When my head/brain was lowered and my feet raised , the headache was as promised...very bad, and the drainage came out in a huge quantity which made the Dr. immediately bring me back to an even supine position. My prayer was answered, no CSF, and I was given antibiotics to help this drainage, which after a week, has lessened greatly, although not completely gone....and now the headaches continue.
The drainage completely stopped on Christmas Day! Finally I could do things and not carry all the gauze and tissue all the time. We had so many good times through the celebration of Jesus' birth and then of course to begin a New Year with great expectations! My family and friends are so very thoughtful and supportive. The prayers continue, and I keep praying for the path I am on to complete what His plan is.
The care at ICU was amazing. I was able to meet so many people who were there for one reason or another. It made me so aware that many people would have perhaps wanted my situation rather than the one they were in. Someone actually did not make it and died just before my family was allowed to come visit me in my room....I could tell my husband was upset by this.
To share this is difficult and yet so important... There are some who constantly fill my heart...my husband, my daughters,my siblings, my nieces, my nephews, my cousins....and of course my Mom. I attended Bible College many years ago, and so many friends have constantly remembered those young days when we sang together, shared our testimonies, and prayed so often for God's Guidance of our lives. Yesterday, Thanksgiving Day, my daughters,Amy Weires and TreeandSherry Marti finally shared the "special information" that I could not remember from my brain surgery, but needed to! They informed me that I told them about seeing my daughter, Geri Ann in Heaven, my mother, my father, my brother, my sister and many other family members in Heaven. That Jesus.... told me I could not stay...I had to come back because He needed me to do something still. I don't pretend to understand all of God's total plan, I read the Bible..I pray..I Believe, but this much I know..."this is not all there is"...this is just a wisp in this world..my daughter's told me that I had wanted to stay in Heaven,(this seemed to hurt them of course because they didn't want me to die) but Jesus said it was "not my time". I guess I was really asking the Nurses in ICU about this message...and then my daughter's were allowed to talk to me, only two people at a time..but the Nurses were not with me during surgery, only after...was this what is referred to as NDE (Near Death Experience)??? I have no real idea...
I was able to share the love of our Lord and Savior with the nurses who were constantly amazed at how much better I was doing. I just could not take oxycodone...ugh!! I really did not want to take Tylenol either, it really never helps me, but I let them put it in my IV...just so they didn't worry. I do so much better with Ibuprofin overall, and am still taking that as allowed to ease the pain in my head, I do have headaches right now, but ummmm...it has only been one week. Next week I go to have the staples removed and then I can wash my hair a little bit better.
My family has been so supportive. Between my Mom, my husband, my siblings, my children....and a whole slew of nieces, nephews, cousins, and friends...my heart is so full of love and joy! Tomorrow is Thanksgiving Day and the plans to be at my daughter's home will bring lots of good times!
My Neuro-Surgeon, Dr. Ricardo Hanel, was the best anyone could have at Mayo Clinic. He came to see me everyday making sure I was doing well.....and then asked me just 3 days after surgery if I would like to go home....of course I said "yes"!! Everyday, I have been getting stronger and feel so much better. The following were parts that were in the process:
1. Blood work to make sure all was well for surgery
2. IV's and more IV's
3. The beautiful surgery "dress"
4. A wonderful oxygen mask and then sleep
5. My head was infused into a "holder"
6. The left head was at the top of the holder
7. An 8 inch cut was made from the left ear up to the top of the head
8. They took out the bone
9. The brain was opened and then the fun stuff to take out the tumor took two MRI's to do it completely
10. Part of the good brain cells had to be taken out to get the tumor out
11. Everything was then put back together with new glue and staples
12. I do not remember talking, but guess I did according to my husband and family
13. Somehow I was given a medicine that had gluten in it which caused a problem with my left arm
14. My speech is difficult, I have forgotten some names and words, but eventually will get better
15. No lifting anything over 10 lbs for 3 weeks
16. Showers and tubs are okay and I have enjoyed them
17. My appetite is fine and I am quite thirsty as well
18. All the things that need to work, do
19. Writing is so much easier than talking
20. After having received the biopsies, we aren't done yet...this is chronic
We will always be so grateful for the extensive great work given to us on this situation that could have been far worse. Have applied for Social Security Disability, but not sure if it will be allowed as yet. My reports are not complete, however, I will have to continue taking Keppra for anti-seizure for quite awhile yet and not allowed to drive. Will probably need Speech Therapist as well. That being said, don't think my job will be able to be done properly since I had been involved with Customer Service.
We have received the "Final Report" concerning the Biopsy...evidently this tumor is very rare. The name given is "CHRONIC HYPERTROPHIC PACHYMENINGITIS" or Idiopathic Hypertrophic Pachymeningitis. They state that the findings are not specific and require clinical correlation. Therefore, once I have been allowed to heal from the craniotomy, there are more tests to follow, including Hematology.
After receiving this biopsy information, my husband and I had time to discuss the future expectations. We were told by our neuro surgeon that this type of tumor can re-occur. Between that information, my delays in obtaining a good enough speech to do my job, and my inability to drive, we decided it was time for me to quit my job. It was not going to be fair for my Manager to continue waiting for me to get to the level needed to perform my position. Knowing that at this time of year, when the company hires additional help for Christmas, his availability to hire a good replacement should be easier than any other time. It was so difficult to call him and let him know, but he fully understood. My sister-in-law took me to the office to collect my personal things that had been there since September 24th. While there, many of my friends and co-workers came to give me hugs. I had forgotten so many of their names...it hurt my heart. They were understanding, but I felt so bad to have forgotten.
I developed a constant drainage from the lowest part of my incision 2 weeks and one day after the surgery. It is light yellow, I called Mayo Clinic to find out how long this drainage should last. Immediately, they wanted to see me! When there, I had a CT Cisternogram to search for a possible CSF leak. Now, I cannot lie...this was the most painful test even more painful that the brain surgery itself that I have ever had! Thank God it was only about fifteen minutes of the "worst". I prayed so much on that table asking the Lord to help me through the pain and not letting it be a problem with CSF. The nurse let me "press" her hands, probably felt more like a "vice"..she was so sweet. When my head/brain was lowered and my feet raised , the headache was as promised...very bad, and the drainage came out in a huge quantity which made the Dr. immediately bring me back to an even supine position. My prayer was answered, no CSF, and I was given antibiotics to help this drainage, which after a week, has lessened greatly, although not completely gone....and now the headaches continue.
The drainage completely stopped on Christmas Day! Finally I could do things and not carry all the gauze and tissue all the time. We had so many good times through the celebration of Jesus' birth and then of course to begin a New Year with great expectations! My family and friends are so very thoughtful and supportive. The prayers continue, and I keep praying for the path I am on to complete what His plan is.
Tuesday, November 12, 2013
2ND MRI AND BRAIN SURGERY
We met with our neuro-surgeon, Dr. Ricardo Hanel at the Mayo Clinic. He was so informative and professional, and yet he held my hand while talking about my lesion. He ordered a new MRI with a higher gradient level and special slices. He also prescribed the drug alternative in generic form for me instead of Keppra which is far less expensive under our insurance program. I have started taking it as prescribed for my seizures.
The new MRI was done on Nov 8th at 7:30am. My daughter, Sherry took me since there were no other appointments made for that day. We went up the night before and had a wonderful mother/daughter time! On our way back to the other side of Florida, Dr. Hanel called me at 10:30am. He said that the tumor had grown just a little bit, but was convinced it needed to be removed sooner than later. He also said he would have to rule out primary or metastic cancer as well. He said he knew that Thanksgiving was coming up and wanted to see what I thought about Nov 20th or the 27th. My response to him was whatever he could work out for us would be fine. He said, he would try his best for the 20th.
A bit later, his nurse, Kim, called to say everything was being scheduled, however, there was a delay for the 20th for anesthesia, so she would not know for sure until the day after Veteran's Day, Nov 12th. I told her I understood and we would wait to hear. In the meantime, looking at airfares for my brother and sister-in-law, I called them and we decided it would be so much cheaper for them to fly in on Nov 15th, Friday, and made those arrangements.
So, again we waited. I did not want to upset too many people to tell them what we knew so far because we did not have a specific date. And then, Kim, called me on Tuesday, Nov 12th to say that all was being scheduled for surgery Wednesday, November 20th. I thanked God for answered prayer immediately, and said as much her. What no one knew except our immediate family is that November 27th was the "angelversary" of my brother, Williams death ,10 years previous. I am so thankful this was not the date.
Now, with this surgery being scheduled for this year we also will have the more affordable choice since our insurance is being changed through my husband's company and we will have a higher deductible starting January 1st by triple the amount currently. Another answer to our prayers!
I found a wonderful "blog" about what to expect when you are having a craniotomy...hope this link works here:
http://head-nurse.blogspot.com/2008/11/what-to-expect-when-youre-expecting.html
So now, we are planning to have a bit of Thanksgiving this coming Sunday at our home with all of our family that can be here. I get to make the turkey and some of our special foods we all love. Something simple, because quite frankly, I get a bit tired now due to the medication.
Prayers are being said constantly, and my thankfulness to our Lord is undeniably constant. The blessings continue to come and this journey will be to His Glory. I will be asking Dr. Hanel to pray with me before the surgery for God's guidance in his work and my recovery. If by some chance the Lord calls me Home, I will also be praying for my family to be comforted knowing I will be waiting for them on the other side.
The new MRI was done on Nov 8th at 7:30am. My daughter, Sherry took me since there were no other appointments made for that day. We went up the night before and had a wonderful mother/daughter time! On our way back to the other side of Florida, Dr. Hanel called me at 10:30am. He said that the tumor had grown just a little bit, but was convinced it needed to be removed sooner than later. He also said he would have to rule out primary or metastic cancer as well. He said he knew that Thanksgiving was coming up and wanted to see what I thought about Nov 20th or the 27th. My response to him was whatever he could work out for us would be fine. He said, he would try his best for the 20th.
A bit later, his nurse, Kim, called to say everything was being scheduled, however, there was a delay for the 20th for anesthesia, so she would not know for sure until the day after Veteran's Day, Nov 12th. I told her I understood and we would wait to hear. In the meantime, looking at airfares for my brother and sister-in-law, I called them and we decided it would be so much cheaper for them to fly in on Nov 15th, Friday, and made those arrangements.
So, again we waited. I did not want to upset too many people to tell them what we knew so far because we did not have a specific date. And then, Kim, called me on Tuesday, Nov 12th to say that all was being scheduled for surgery Wednesday, November 20th. I thanked God for answered prayer immediately, and said as much her. What no one knew except our immediate family is that November 27th was the "angelversary" of my brother, Williams death ,10 years previous. I am so thankful this was not the date.
Now, with this surgery being scheduled for this year we also will have the more affordable choice since our insurance is being changed through my husband's company and we will have a higher deductible starting January 1st by triple the amount currently. Another answer to our prayers!
I found a wonderful "blog" about what to expect when you are having a craniotomy...hope this link works here:
http://head-nurse.blogspot.com/2008/11/what-to-expect-when-youre-expecting.html
So now, we are planning to have a bit of Thanksgiving this coming Sunday at our home with all of our family that can be here. I get to make the turkey and some of our special foods we all love. Something simple, because quite frankly, I get a bit tired now due to the medication.
Prayers are being said constantly, and my thankfulness to our Lord is undeniably constant. The blessings continue to come and this journey will be to His Glory. I will be asking Dr. Hanel to pray with me before the surgery for God's guidance in his work and my recovery. If by some chance the Lord calls me Home, I will also be praying for my family to be comforted knowing I will be waiting for them on the other side.
Saturday, November 2, 2013
DEVELOPING ADVOCACY IN HEALTH ISSUES
To be your own health advocate means being as informed as possible of your body's condition. I am fortunate that I had taken courses to become a certified Patient Care Technician. (Certified Nursing Assistant, Phlebotomist, EKG Technician and Instructor, and CPR) I also worked for an Internal Medicine Dr. part-time which let me gain certain information many people may not have encountered on a normal basis.
That being said, I must admit, I was oblivious to the "signs of seizures" I was experiencing over time. The "black-outs" or losses of time, I regarded these symptoms as stress or being tired. The problems in not being able to say the words I wanted to or read them properly, again I thought were stress related. In the past year I had started working full-time from part-time, so the stress just seemed normal. Once this lesion became known, the pieces started fitting together. (I hid these issues well from everyone else since they were sporadic and very short, until the "Big One").
What you can do as a patient still in this great country of ours, is educate yourself about the facts, the choice of treatment, and doing what seems best. Now, I will admit that not all websites on the Internet are as factual as one would hope. However, start with those medical support sites that are listed with NIH, Mayo Clinic, and then other specialty areas.
Our nurses are a wealth of information. I spoke with several whom I know personally. Each of them had several good ideas on proper research. Your regular Dr. ,whom you see for your annual physical, has great nurses who can also go over your last vitals and blood work with you. Our current medical insurance also provides a great nurse network.
Speaking of your regular physician, they are your "support", even though they are not specialized in a specific area, you will need their assessment of you, the total person. My internal medicine Dr. supported me so well during the evaluation and treatment of my Celiac Disease. She supported my decision of staying prescription drug free while treating my diet changes and becoming gluten-free. Therefore, all of my blood work and vitals became normal during that year. I am so very thankful for her continual patience and persistence during that process.
Your medical insurance provider is an absolute must to contact. Your coverage on any specific area needs to be known especially when obtaining a second opinion. They also have their own internal specialists, usually a RN who will contact you on a regular basis during these types of events. Ultimately, if you have any questions concerning prescriptions written for you, their pharmacy specialists are also a good resource. I have the insurance company's nurse line in my cell phone, so I can contact them at any time.
I am sure you have heard this before, but repeating it is worthwhile. There is no such thing as a "dumb" question. Always ask your medical professionals questions concerning treatment options. When I am meeting with our neuro-surgeon this next week, I plan to take my tablet and write down the answers to my questions. I have never had brain surgery before, so there are many unanswered questions.
That being said, I must admit, I was oblivious to the "signs of seizures" I was experiencing over time. The "black-outs" or losses of time, I regarded these symptoms as stress or being tired. The problems in not being able to say the words I wanted to or read them properly, again I thought were stress related. In the past year I had started working full-time from part-time, so the stress just seemed normal. Once this lesion became known, the pieces started fitting together. (I hid these issues well from everyone else since they were sporadic and very short, until the "Big One").
What you can do as a patient still in this great country of ours, is educate yourself about the facts, the choice of treatment, and doing what seems best. Now, I will admit that not all websites on the Internet are as factual as one would hope. However, start with those medical support sites that are listed with NIH, Mayo Clinic, and then other specialty areas.
Our nurses are a wealth of information. I spoke with several whom I know personally. Each of them had several good ideas on proper research. Your regular Dr. ,whom you see for your annual physical, has great nurses who can also go over your last vitals and blood work with you. Our current medical insurance also provides a great nurse network.
Speaking of your regular physician, they are your "support", even though they are not specialized in a specific area, you will need their assessment of you, the total person. My internal medicine Dr. supported me so well during the evaluation and treatment of my Celiac Disease. She supported my decision of staying prescription drug free while treating my diet changes and becoming gluten-free. Therefore, all of my blood work and vitals became normal during that year. I am so very thankful for her continual patience and persistence during that process.
Your medical insurance provider is an absolute must to contact. Your coverage on any specific area needs to be known especially when obtaining a second opinion. They also have their own internal specialists, usually a RN who will contact you on a regular basis during these types of events. Ultimately, if you have any questions concerning prescriptions written for you, their pharmacy specialists are also a good resource. I have the insurance company's nurse line in my cell phone, so I can contact them at any time.
I am sure you have heard this before, but repeating it is worthwhile. There is no such thing as a "dumb" question. Always ask your medical professionals questions concerning treatment options. When I am meeting with our neuro-surgeon this next week, I plan to take my tablet and write down the answers to my questions. I have never had brain surgery before, so there are many unanswered questions.
Thursday, October 31, 2013
THE IN-BETWEEN TIMES...
Since this new part of my life's journey, there are several "helps" I have had along the way. Most prominent is the Lord;
5 “I am the vine; you are the branches. If you remain in me and I in you, you will bear much fruit; apart from me you can do nothing."
The VIP's, are my husband, Bob, my children, my parents, my siblings, my cousins, other family members, and my dear friends. Without their support and prayers, my propelling movement would be much slower towards the goal of finishing this race.
I need to mention my job and therefore, my boss. When my husband first contacted my boss, he alerted him to my being in the hospital and that tests were being performed. After the surprise diagnosis, I contacted him myself. For over two years I had worked with this man and enjoyed my working days so very much. The professional manner my boss dealt with on a day to day basis is remarkable. I knew very little about his personal life, but that is the acceptable process, just the normal "conversational" chit chat that most people share.
There is an amazing part to this....my boss shared with me that his own father had been through this experience of having a brain tumor. I do not believe in "coincidences", because I believe our purpose here is pre-destined by God. All I can say is, "I am always amazed...but never surprised"! Because of my bosses own personal experience with his father, there is a complete understanding of this process that I need not explain constantly. So; DONE; my FMLA leave has been activated without any specific issues.
John 15:5
New International Version (NIV)
The VIP's, are my husband, Bob, my children, my parents, my siblings, my cousins, other family members, and my dear friends. Without their support and prayers, my propelling movement would be much slower towards the goal of finishing this race.
I need to mention my job and therefore, my boss. When my husband first contacted my boss, he alerted him to my being in the hospital and that tests were being performed. After the surprise diagnosis, I contacted him myself. For over two years I had worked with this man and enjoyed my working days so very much. The professional manner my boss dealt with on a day to day basis is remarkable. I knew very little about his personal life, but that is the acceptable process, just the normal "conversational" chit chat that most people share.
There is an amazing part to this....my boss shared with me that his own father had been through this experience of having a brain tumor. I do not believe in "coincidences", because I believe our purpose here is pre-destined by God. All I can say is, "I am always amazed...but never surprised"! Because of my bosses own personal experience with his father, there is a complete understanding of this process that I need not explain constantly. So; DONE; my FMLA leave has been activated without any specific issues.
I have spent more time reading the Bible and praying. My relationship with the Lord has been strengthened through all of this. His constant reassurance has led me to remember that my time here is but a wisp, a vapor, and that someday I will be with Him in Heaven. There is no fear in this aspect, I have known it for a very long time; my only concern is for those I would leave behind. In the meantime, while I am still here, I have asked Him to guide me to share His message of Love and Hope and Salvation.
And then there is my "piece-o-me's" that I started years ago. Things that I wanted to make and share with those who are so precious in my life. I like to quilt, write, and other certain crafts at times. I love to share these pieces with as many as I can.
Admittedly, there are times that I just want to do nothing. Just be. My favorite time in these periods is to sit outside and enjoy the beauty of the sky, the stars, little creatures and thank God for the world around me.
Communication has become a "huge" part of my life as well. Knowing that my speech and hearing have been somewhat affected has drawn me closer to 'staying in touch' with those who I love and feel connected to. Just saying hello to my neighbors or writing on my Facebook page has brought simple pleasures in each day.
All and all through the waiting, the determined phrase I keep telling myself is:
He's Got This!
And then there is my "piece-o-me's" that I started years ago. Things that I wanted to make and share with those who are so precious in my life. I like to quilt, write, and other certain crafts at times. I love to share these pieces with as many as I can.
Admittedly, there are times that I just want to do nothing. Just be. My favorite time in these periods is to sit outside and enjoy the beauty of the sky, the stars, little creatures and thank God for the world around me.
All and all through the waiting, the determined phrase I keep telling myself is:
He's Got This!
Subscribe to:
Posts (Atom)