First and Foremost, my Easter Sunday this year...was one of the most notable of my life! Not only did we celebrate Jesus' Resurrection and God's wonderful gift of eternal life...but my daughter, Sherry's birthday was also on this day! It was a tremendous time of family enjoyment!
I still have 3 more weeks to complete the antibiotic feature of 3 IV infusions per day. The medication of Cefazolin 2gm is inserted into each "grenade". The process is easy, and the timing has not been a huge issue! My Infectious Dr. stated, then we need to look for any obtrusion within 30 days...10% of the patients have a recurring issue within this time frame....if not then...then the 90 day process includes an additional 3%. I asked how will we know? What signs are there? He answered saying nothing specific, and a CT or MRI will not help.
I think this will be perfect timing for me to go and see my new grandchild, right after the completion of my antibiotic regime. I should be well enough to enjoy the time with my family! I should also be well enough to attend my great nephew's graduation in May. The real tricky time will be in July. I am supposed to attend my sister's wedding at that time and celebrate my oldest daughter's birthday....the wedding is out of state....the birthday is local. Praying this infection does not reoccur.
There is a couple in Tennessee that I met through the support group on-line for all Neuro issues. Yes, one other person I know in the world who is also dealing with IHCP. God truly knew that I needed them, we have become very close. Deb and Ray are about the same age as Bob and I. Ray has the disease, and Deb is his caregiver spouse. Not long after my last craniotomy, Deb called me from their ER in TN. Ray had become disoriented and lethargic with an extremely high ALT/AST reading. His blood pressure was extremely low as well. So, Deb was talking with an intern and asked if I would also talk to him. I tried to help with what little I know, and explained a few things I knew about the MRI and the dura. Not sure how much I helped, but am sure that Deb needed me, and I was thankful to be available. Ray is getting better.
It is April 28th, I met with my new neurosurgeon. He checked the incision area said that it is healing well. We talked about the process of the infection and treatment. My neurosurgeon says they can do some blood work to follow the actual healing process.
Everyday, I am so thankful! God's blessings are extensive!
Tuesday, April 29, 2014
Thursday, April 10, 2014
NEW PLANNING BEGINS TOWARDS THE "IDIOPATHIC" PROCESS...
Weekly now, I must go to see the Dr. in charge of my infection care. The name of the infection that was confirmed through testing is Staphylococcus Aurea's. Evidently this infection is not so rare, especially to craniotomy surgery. This infection caused Osteomylitis to my temporal bone.
I met with my Infectious Dr. yesterday, he gave me the copies of the process from my hospital stay. They test my blood work every week for progress. The infection had compromised my temporal bone and of course affected the "bone flap" so much, it was discarded. A part of my skull was discarded...so easily done.
Now, for the next 5 weeks, at least...I will be going to get tested and receive the new set of "grenades" to be applied to my PIIC line, 3 times per day. It has to be every 8 hours, so I have chosen 5am, 1pm, and 9pm. This suits our (my hubby's and mine) daily schedule, since we are early morning people.
In my appointment with the infectious Dr. yesterday, he showed me the results of testing. I have come at least from the "extreme" to "active" status.
Here is a Medical Report about the process I am currently in:
Osteomyelitis Of The Skull
Osteomyelitis of the skull is a relatively rare disease. However, the proximity of the brain and the propensity to formation of epidural abscess necessitates prompt diagnosis and definitive early treatment. The skull infection originates from three key sources : (a) Paranasal sinusitis, mastoiditis, or otitis; by direct spread (b) haematogenous spread secondary to bacteraemia or fungaemia; (c) penetrating trauma or craniotomy.
War wounds tend to be more extensive and contaminated than civilian wounds, but principles of treatment are same .
Pain and swelling at the wound site should subside within a few days of closure. Clinical manifestation of traumatic wound infection may become apparent within days to months after closure.When an infected scalp wound is suspected, treatment should be immediate.9 The wound is opened, all purulent material evacuated and suture materials removed, and devitalized tissue excised. To ensure satisfactory recovery of the exposed skull, the wound should be closed loosely over a drain, which should be removed within 24 to 48 hours. A single layered closure with an inert suture material, followed by a gentle compressive dressing to obliterate any dead space, are applied9.
Staphylococcus species are the commonest culprits, and appropriate systemic antibiotics should be started before culture result is obtained. Persistence of infection after adequate treatment should suggest subgaleal spread, underlying osteomyelitis, or erroneous identification of the offending organism. Signs of meningeal irritation, seizures, new focal neurologic deficits, or a decreased level of consciousness may signal penetration of the infection beyond the galea, which warrants a lumbar puncture and a further investigation including a contrast enhanced CT scan and MRI.
Craniotomy infections
Most recent studies report risk of infection of 1 to 3%, although re-operation on glioma patients is associated with rates as high as 11%.10 This increased risk may be attributed to reopening of surgical wounds and prior irradiation of the scalp. Other factors contributing to the risk of infection after craniotomy include long duration of surgery, multiple incisions, placement of a drain , foreign body, the presence of a CSF leak, and immunosuppression of the patient.11 Treatment consists of systemic antibiotics and surgical débridement. The risk of spreading superficial infection to the deeper layers after craniotomy is sufficiently serious to warrant antibiotic administration even before cultures are obtained. Early detection of a craniotomy flap infection is important by looking out for the local and systemic signs of infection. Once infection is identified, the wound must be opened. All purulent material and visible sutures should be removed, followed by mechanical débridement and irrigation. Dura should not be violated unless subdural infection is suspected. The standard technique is removal of an infected bone flap to prevent it being a nidus for chronic infection. A subsequent cranioplasty is then done later.
My patient assessment is on the good side. Almost two weeks since my last craniotomy, I have begun to feel a little more strength. There are times though when my heart feels so slow, I become very lightheaded. I continue to become dizzy when walking, so I am using the helps that a great PT gave me at the hospital. He suggested I widen my gait, putting more space between the footage to attain a stronger foundation.
There are several appointments scheduled for this month and next month. I need to remember the "full flavor" of my journey. My family also has many blessings coming our way to include my daughter, Sherry's birthday which happens to be on Easter Sunday this year. My great nephew, Tyler, graduates from high school at the end of May, which will bring a huge family gathering as well. And then....my newest grand-daughter, Lucy, is due to be born at the end of May! Such wonderful days ahead to keep the focus on "life" in the positive!
My family, friends, and neighbors have been so supportive to my latest needs. How God answers prayers continually, is always amazing!
So, in the new planning, more testing will begin with my new ENT Dr., my new neurosurgeon, the infectious Dr., support from my neurologist, and of course my hematologist. Have you ever heard of "meet and greets"??? I pray before those times, knowing God has a reason for me to be there. That, my friends, is in His Purpose.
I met with my Infectious Dr. yesterday, he gave me the copies of the process from my hospital stay. They test my blood work every week for progress. The infection had compromised my temporal bone and of course affected the "bone flap" so much, it was discarded. A part of my skull was discarded...so easily done.
Now, for the next 5 weeks, at least...I will be going to get tested and receive the new set of "grenades" to be applied to my PIIC line, 3 times per day. It has to be every 8 hours, so I have chosen 5am, 1pm, and 9pm. This suits our (my hubby's and mine) daily schedule, since we are early morning people.
In my appointment with the infectious Dr. yesterday, he showed me the results of testing. I have come at least from the "extreme" to "active" status.
Here is a Medical Report about the process I am currently in:
Osteomyelitis Of The Skull
Osteomyelitis of the skull is a relatively rare disease. However, the proximity of the brain and the propensity to formation of epidural abscess necessitates prompt diagnosis and definitive early treatment. The skull infection originates from three key sources : (a) Paranasal sinusitis, mastoiditis, or otitis; by direct spread (b) haematogenous spread secondary to bacteraemia or fungaemia; (c) penetrating trauma or craniotomy.
War wounds tend to be more extensive and contaminated than civilian wounds, but principles of treatment are same .
Pain and swelling at the wound site should subside within a few days of closure. Clinical manifestation of traumatic wound infection may become apparent within days to months after closure.When an infected scalp wound is suspected, treatment should be immediate.9 The wound is opened, all purulent material evacuated and suture materials removed, and devitalized tissue excised. To ensure satisfactory recovery of the exposed skull, the wound should be closed loosely over a drain, which should be removed within 24 to 48 hours. A single layered closure with an inert suture material, followed by a gentle compressive dressing to obliterate any dead space, are applied9.
Staphylococcus species are the commonest culprits, and appropriate systemic antibiotics should be started before culture result is obtained. Persistence of infection after adequate treatment should suggest subgaleal spread, underlying osteomyelitis, or erroneous identification of the offending organism. Signs of meningeal irritation, seizures, new focal neurologic deficits, or a decreased level of consciousness may signal penetration of the infection beyond the galea, which warrants a lumbar puncture and a further investigation including a contrast enhanced CT scan and MRI.
Craniotomy infections
Most recent studies report risk of infection of 1 to 3%, although re-operation on glioma patients is associated with rates as high as 11%.10 This increased risk may be attributed to reopening of surgical wounds and prior irradiation of the scalp. Other factors contributing to the risk of infection after craniotomy include long duration of surgery, multiple incisions, placement of a drain , foreign body, the presence of a CSF leak, and immunosuppression of the patient.11 Treatment consists of systemic antibiotics and surgical débridement. The risk of spreading superficial infection to the deeper layers after craniotomy is sufficiently serious to warrant antibiotic administration even before cultures are obtained. Early detection of a craniotomy flap infection is important by looking out for the local and systemic signs of infection. Once infection is identified, the wound must be opened. All purulent material and visible sutures should be removed, followed by mechanical débridement and irrigation. Dura should not be violated unless subdural infection is suspected. The standard technique is removal of an infected bone flap to prevent it being a nidus for chronic infection. A subsequent cranioplasty is then done later.
My patient assessment is on the good side. Almost two weeks since my last craniotomy, I have begun to feel a little more strength. There are times though when my heart feels so slow, I become very lightheaded. I continue to become dizzy when walking, so I am using the helps that a great PT gave me at the hospital. He suggested I widen my gait, putting more space between the footage to attain a stronger foundation.
There are several appointments scheduled for this month and next month. I need to remember the "full flavor" of my journey. My family also has many blessings coming our way to include my daughter, Sherry's birthday which happens to be on Easter Sunday this year. My great nephew, Tyler, graduates from high school at the end of May, which will bring a huge family gathering as well. And then....my newest grand-daughter, Lucy, is due to be born at the end of May! Such wonderful days ahead to keep the focus on "life" in the positive!
My family, friends, and neighbors have been so supportive to my latest needs. How God answers prayers continually, is always amazing!
So, in the new planning, more testing will begin with my new ENT Dr., my new neurosurgeon, the infectious Dr., support from my neurologist, and of course my hematologist. Have you ever heard of "meet and greets"??? I pray before those times, knowing God has a reason for me to be there. That, my friends, is in His Purpose.
Wednesday, April 2, 2014
MY SECOND CRANIOTOMY
I believe that things in life happen for a purpose....
There in my mind, is no coincidence.
Sunday, March 23, 2014
I had noticed some swelling near my left ear for a couple of days, but seemed to be helped by Advil and said nothing. My husband left early for a planned week business trip to his company's home office. He is my support, my best friend, he had already missed so much time helping me, he needed to attend this meeting. And I kissed him goodbye.
Later that same day, my daughter, Sherry, and her family came to visit. I showed the now enlarging bulge by my ear to my son-in-law. I asked him to say nothing, but to please be aware I may need some help. I did not want to trouble my daughter since she just had surgery a few days before to remove a soft ball sized ovarian cyst. She was also diagnosed with Grave's Disease. She did not need additional drama.
I enjoyed this day with my children and grand-daughters and thanked God for His Blessings. I pushed back the pain.
Monday, March 24, 2014
When I awoke I noticed even further swelling extending towards my jaw. The pain was now a 6! I took more Advil and made a call to my former neurosurgeon's PA, Grace Bryan. I explained the changes to Grace. She asked if I knew about Dr. Hanel's leaving, and I said yes, but had not yet received a letter of a new assigned Dr. (of course she could not tell me where Dr. Hanel was) She stated that if I came to Mayo, they would need to do another Cisternogram. She suggested a "wait and see". With possibly needing the most painful test again, I agreed. I took more Advil and prayed.
Tuesday, March 25, 2014
More pain...more Advil...and now I called and left a message for my new neurologist in Sarasota for some help. He returned my call around 4:30pm and gave me a name of a neurosurgeon in Sarasota to contact. I tried, but the phones had been having issues in that area from a very bad storm, so I could not reach them.
I called my son-in-law and now, my daughter knew as well. We were going to try and contact a neurosurgeon the next morning and I was staying overnight with them. I couldn't make it. Around 11:00pm the pain became so much more involved into my brain, the swelling increased, I had to go now. I felt bad having to ask my daughter to take me to the ER, but she was strong and determined to get me there.
At the ER, they immediately took me in after the history and seeing the swelling. A CT was performed, a call to the "on call" neurosurgeon was made, and a huge amount of purulent material was suctioned. An infection had occurred. I was admitted, given pain medication and then I met the Dr. He told me about the infection around the brain flap from the previous craniotomy and that surgery was needed. I was hesitant, concerned about the Mayo Clinic response, wishing for my Dr. Hanel. He left, and I prayed.
Wednesday, March 26, 2014
I received a call from Mayo Clinic. I told them about my call to Grace, they said that was known. Then stated they would support the Dr.in Sarasota with any assistance needed, to have the surgery performed in Sarasota. The advice was that I really needed to take action. Still, I felt unsure. I contacted my neurologist, Dr. Madden, in Sarasota again and he said he would be used as a consult for the surgery. He increased my Keppra to protect me from possible epileptic seizures.
I had so wanted my neurosurgeon, Dr. Hanel to do this...I just didn't know where he was yet.
I called my husband and he made the arrangements to return for my surgery scheduled for Friday.
Thursday, March 27, 2014
This day was full of pain. The Dr. arranged for his PA, to perform another suction of the infection fluid. This helped immensely. I could "breathe" again. My nurses were so wonderful and supportive. Even my room mate patient, Robyn, and her family were helpful and wonderful believers of faith. We shared many good moments together.
And then my best friend arrived! My husband looked so tired, but his smile was ear to ear. Thank God he arrived safely and now we could move on.
Friday, March 28, 2014
Many calls were made before my assigned time of surgery in the late afternoon. Regretfully, I called my Mom (she is my step-mother, but has been my Mom for over 50 years, since my mother died when I was 9 years old..a blessing!) to let her know I would not be able to fly home (my hometown) as planned the next week. I also had to call my brother, Brad, to cancel his flight arrangements for me at Easter. Disappointments have always been a weakness of mine, and I prayed for His forgiveness and peace to all.
The time had come, I was being moved to surgery. The nurse, a man named Fred, greeted me. He was a "kindred spirit"! Always amazed! He was also a Celiac, and assured me that no medicines under his watch would be full of any gluten. I laughed and felt comforted. My anesthesiologist, came and listened to my request of no "push" on the IV too hurriedly. This always caused so much pain and seemed to be the norm in some of my previous surgeries. This time, I did not experience that pain as promised.
Awakening was difficult. I was so sick. How could I have anything to throw up. I had not eaten for over 20 hours, and yet, the nausea was constant. Perhaps I had swallowed some of the infection? My ICU nurse, Erin, was amazing! She knew just what would help, and the room stopped twirling around me.
Why is it, that we get so "nasty" from the drugs used at surgery? I asked my husband later, my best friend, if I was at least nicer to him this time....and he said, no. It hurts to know that I may have said something bad to him, even a fraction.
Saturday, March 29, 2014
I had to leave ICU in the afternoon...Erin tried to keep me, but I was now too well to stay. She was happy for my being so much better, but again she was another "kindred spirit". It was hard to say goodbye.
I was moved to a private room this time. And again, the nurses were the best! I was allowed to sleep untroubled and only awakened once for vital signs and pain medication. They were always surprised when I said no to percosette or oxycodone, but I told them it made me too ill. So they would give me my Motrin and a little duladin in between.
My day was full of visits and some alone time. The alone time let me continue to thank God in prayer for all of His Blessings, and to pray for others I knew were in need. Prayer is the unwritten prescription that works best!
Sunday, March 30, 2014
The Dr. and his PA came to check on me. We discussed the surgery, and made follow-up plans.
The testing on all of the infection came back as a Staph infection. Although a very difficult infection to treat, there is a good plan. I will need 3 doses of IV per day for the next 4 to 6 weeks. That being said, I have a PIIC line in my right arm to follow the process. It is also much easier to take blood tests along the way. (yes, the insertion of this line hurt!)
Dr. Madden came to see me after all my family and friends had left. Late evening, he was off, but wanted to see how I was doing. We spoke about my not having any additional seizures and now to go back to my normal dosage when I would be released the next day.
Monday, March 31, 2014
I will be going home tonight after my last infusion of antibiotics. I am feeling so well, and told the nurse if they had any filing or typing to do, let me know, I would love to help. She laughed at me and said "she wished".
My hubby brought me home, and I slept soundly all night.
Tuesday, April 1, 2014
We had an appointment with the Infectious Disease Dr. who was handling my antibiotics and PIIC line. Actually, it was to be a lesson on how to perform my own infusions. I passed with flying colors and came home with everything needed for a solid week. Every week, I will be blood tested, and given more of the antibiotic for about 6 weeks duration.
I spent my day at home comfortably. Reading, writing, talking, and praying, but also resting. Do not pick up anything that weighs more than 5lbs was ordered....really??? My doggie weighs 7.5 lbs, I have to pick her up once in awhile. I will be careful.
It is good to be here. Our Father will keep helping me get this "fixed". The right places, the right people, the right time. He has a purpose in all of this. I have realized , He has needed me to meet some special people along this journey for His sake.
There in my mind, is no coincidence.
Sunday, March 23, 2014
I had noticed some swelling near my left ear for a couple of days, but seemed to be helped by Advil and said nothing. My husband left early for a planned week business trip to his company's home office. He is my support, my best friend, he had already missed so much time helping me, he needed to attend this meeting. And I kissed him goodbye.
Later that same day, my daughter, Sherry, and her family came to visit. I showed the now enlarging bulge by my ear to my son-in-law. I asked him to say nothing, but to please be aware I may need some help. I did not want to trouble my daughter since she just had surgery a few days before to remove a soft ball sized ovarian cyst. She was also diagnosed with Grave's Disease. She did not need additional drama.
I enjoyed this day with my children and grand-daughters and thanked God for His Blessings. I pushed back the pain.
Monday, March 24, 2014
When I awoke I noticed even further swelling extending towards my jaw. The pain was now a 6! I took more Advil and made a call to my former neurosurgeon's PA, Grace Bryan. I explained the changes to Grace. She asked if I knew about Dr. Hanel's leaving, and I said yes, but had not yet received a letter of a new assigned Dr. (of course she could not tell me where Dr. Hanel was) She stated that if I came to Mayo, they would need to do another Cisternogram. She suggested a "wait and see". With possibly needing the most painful test again, I agreed. I took more Advil and prayed.
Tuesday, March 25, 2014
More pain...more Advil...and now I called and left a message for my new neurologist in Sarasota for some help. He returned my call around 4:30pm and gave me a name of a neurosurgeon in Sarasota to contact. I tried, but the phones had been having issues in that area from a very bad storm, so I could not reach them.
I called my son-in-law and now, my daughter knew as well. We were going to try and contact a neurosurgeon the next morning and I was staying overnight with them. I couldn't make it. Around 11:00pm the pain became so much more involved into my brain, the swelling increased, I had to go now. I felt bad having to ask my daughter to take me to the ER, but she was strong and determined to get me there.
At the ER, they immediately took me in after the history and seeing the swelling. A CT was performed, a call to the "on call" neurosurgeon was made, and a huge amount of purulent material was suctioned. An infection had occurred. I was admitted, given pain medication and then I met the Dr. He told me about the infection around the brain flap from the previous craniotomy and that surgery was needed. I was hesitant, concerned about the Mayo Clinic response, wishing for my Dr. Hanel. He left, and I prayed.
Wednesday, March 26, 2014
I received a call from Mayo Clinic. I told them about my call to Grace, they said that was known. Then stated they would support the Dr.in Sarasota with any assistance needed, to have the surgery performed in Sarasota. The advice was that I really needed to take action. Still, I felt unsure. I contacted my neurologist, Dr. Madden, in Sarasota again and he said he would be used as a consult for the surgery. He increased my Keppra to protect me from possible epileptic seizures.
I had so wanted my neurosurgeon, Dr. Hanel to do this...I just didn't know where he was yet.
I called my husband and he made the arrangements to return for my surgery scheduled for Friday.
Thursday, March 27, 2014
This day was full of pain. The Dr. arranged for his PA, to perform another suction of the infection fluid. This helped immensely. I could "breathe" again. My nurses were so wonderful and supportive. Even my room mate patient, Robyn, and her family were helpful and wonderful believers of faith. We shared many good moments together.
And then my best friend arrived! My husband looked so tired, but his smile was ear to ear. Thank God he arrived safely and now we could move on.
Friday, March 28, 2014
Many calls were made before my assigned time of surgery in the late afternoon. Regretfully, I called my Mom (she is my step-mother, but has been my Mom for over 50 years, since my mother died when I was 9 years old..a blessing!) to let her know I would not be able to fly home (my hometown) as planned the next week. I also had to call my brother, Brad, to cancel his flight arrangements for me at Easter. Disappointments have always been a weakness of mine, and I prayed for His forgiveness and peace to all.
The time had come, I was being moved to surgery. The nurse, a man named Fred, greeted me. He was a "kindred spirit"! Always amazed! He was also a Celiac, and assured me that no medicines under his watch would be full of any gluten. I laughed and felt comforted. My anesthesiologist, came and listened to my request of no "push" on the IV too hurriedly. This always caused so much pain and seemed to be the norm in some of my previous surgeries. This time, I did not experience that pain as promised.
Awakening was difficult. I was so sick. How could I have anything to throw up. I had not eaten for over 20 hours, and yet, the nausea was constant. Perhaps I had swallowed some of the infection? My ICU nurse, Erin, was amazing! She knew just what would help, and the room stopped twirling around me.
Why is it, that we get so "nasty" from the drugs used at surgery? I asked my husband later, my best friend, if I was at least nicer to him this time....and he said, no. It hurts to know that I may have said something bad to him, even a fraction.
Saturday, March 29, 2014
I had to leave ICU in the afternoon...Erin tried to keep me, but I was now too well to stay. She was happy for my being so much better, but again she was another "kindred spirit". It was hard to say goodbye.
I was moved to a private room this time. And again, the nurses were the best! I was allowed to sleep untroubled and only awakened once for vital signs and pain medication. They were always surprised when I said no to percosette or oxycodone, but I told them it made me too ill. So they would give me my Motrin and a little duladin in between.
My day was full of visits and some alone time. The alone time let me continue to thank God in prayer for all of His Blessings, and to pray for others I knew were in need. Prayer is the unwritten prescription that works best!
Sunday, March 30, 2014
The Dr. and his PA came to check on me. We discussed the surgery, and made follow-up plans.
The testing on all of the infection came back as a Staph infection. Although a very difficult infection to treat, there is a good plan. I will need 3 doses of IV per day for the next 4 to 6 weeks. That being said, I have a PIIC line in my right arm to follow the process. It is also much easier to take blood tests along the way. (yes, the insertion of this line hurt!)
Dr. Madden came to see me after all my family and friends had left. Late evening, he was off, but wanted to see how I was doing. We spoke about my not having any additional seizures and now to go back to my normal dosage when I would be released the next day.
Monday, March 31, 2014
I will be going home tonight after my last infusion of antibiotics. I am feeling so well, and told the nurse if they had any filing or typing to do, let me know, I would love to help. She laughed at me and said "she wished".
My hubby brought me home, and I slept soundly all night.
Tuesday, April 1, 2014
We had an appointment with the Infectious Disease Dr. who was handling my antibiotics and PIIC line. Actually, it was to be a lesson on how to perform my own infusions. I passed with flying colors and came home with everything needed for a solid week. Every week, I will be blood tested, and given more of the antibiotic for about 6 weeks duration.
I spent my day at home comfortably. Reading, writing, talking, and praying, but also resting. Do not pick up anything that weighs more than 5lbs was ordered....really??? My doggie weighs 7.5 lbs, I have to pick her up once in awhile. I will be careful.
It is good to be here. Our Father will keep helping me get this "fixed". The right places, the right people, the right time. He has a purpose in all of this. I have realized , He has needed me to meet some special people along this journey for His sake.
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