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.
Wednesday, November 27, 2013
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.
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