I saw the neurosurgeon this morning. The test yesterday did not give clear direction. The shunt is draining and it seemed to be working at a fairly normal rate which challenges their idea that the shunt is overdraining. At one time they had hoped that I would no longer need the shunt and we would gradually work toward getting rid of it, but that doesn't seem to be the case. However, there is also not a clear reason why I am struggling with my headaches again, either.
After telling me that my case is very complicated--not something I liked to hear from Johns Hopkins--they decided to do the in hospital spinal fluid monitoring test. Never say never, because I said just a short time ago that I wouldn't do another spinal tap and now I will essentially be doing one for four or five days. Not looking forward to that, but really hoping that this will give direction to the doctor. Normally it takes 6-8 weeks to get this test scheduled, but thankfully their is an opening on Monday so we will be staying for the week and after the test they will determine what to do next.
A friend (who used to live in our town) that lives near Baltimore has invited us to stay with her starting tomorrow and she will take us back here in time to be admitted Monday morning. That will be a nice break from the hotel! We are very thankful.
I am thankful that this doctor hasn't thrown up his hands (yet) and give up and thankful that the test is scheduled tomorrow. I am a little blue about having to stay for a period of time yet and really not looking forward to another hospital stay but we will take things one day at a time. I am also very thankful that my mom has agreed to stay with me so the guys (my dad and Kyle) will be "baching" it for a while yet. The doctor told us when we reschedule our return flight to leave the return date open since it is hard to say what steps may be taken next.
Thursday, December 8, 2011
Wednesday, December 7, 2011
Wednesday
I had the shunt patency test done today. It is relatively painless. Radioactive fluid is injected into the tube of the shunt in my head right before the pump. I lost a little hair--they shaved about a square inch of hair off but it isn't all that visible just behind and above my ear. The test was supposed to take an hour but it ended up taking a good two hours instead. I'm not sure what that will mean for results. I was also asked to be part of a research test group as they test a new way of determining the level of fluid flowing through the tubes. I agreed so they did that as well. We don't know the results of the shunt patency but we do know that the results of the second test was inconclusive.
I see the neurosurgeon at 9:00 in the morning and hopefully we will know more then. I continue to pray that the Ultimate Healer will provide answers to the doctors for healing.
I see the neurosurgeon at 9:00 in the morning and hopefully we will know more then. I continue to pray that the Ultimate Healer will provide answers to the doctors for healing.
Tuesday, December 6, 2011
Tuesday
We are in Baltimore! That feels like a pretty big accomplishment right now. I am whipped but I laid down for a few hours and now thought I would just jot a note.
The trip was a bit more "exciting" than what I would prefer. :) My parents majorly overslept and woke up at the time they had planned to be at our house. So we pushed but walked onto the plane just in time. Then in Minneapolis we discovered that dad's phone had fallen into my bag! To top it off, we had an incident on the automated walkways. We got to the end of the flat escalator and instead of my wheelchair rolling off, it stayed put! My mom walked backwards quickly and then stepped off as people started piling up behind us. A friendly guy quickly took control and pushed my wheelchair off before people started to topple.
A blessing is that a wonderful person that we know from Redeemer had seen us get on the plane so he waited for us to get off and then helped carry our bags to our connecting gate. This was a big deal because it was a very long walk! Thanks Dan! He also ended up with my dad's cell phone and will be taking it back to him in a couple days.
I am doing okay. The trip went well besides the few "exciting" events but I was pretty thankful to find a place to lay down for a while when we got to the hotel. We just had supper in the hotel and they had fantastic fish, which was a treat for both of us.
My test is scheduled for 1:30 tomorrow. We are praying that there are conclusive answers after the testing and that I will be on the road to recovery soon!
By the way, I have written about my sister Tami and her need for surgery. She is improving quickly although she has the restriction on lifting for another 3 weeks yet. The great news is that the pathology reports came back clear so she will not have to worry about further treatments for cancer. We are so thankful!
The trip was a bit more "exciting" than what I would prefer. :) My parents majorly overslept and woke up at the time they had planned to be at our house. So we pushed but walked onto the plane just in time. Then in Minneapolis we discovered that dad's phone had fallen into my bag! To top it off, we had an incident on the automated walkways. We got to the end of the flat escalator and instead of my wheelchair rolling off, it stayed put! My mom walked backwards quickly and then stepped off as people started piling up behind us. A friendly guy quickly took control and pushed my wheelchair off before people started to topple.
A blessing is that a wonderful person that we know from Redeemer had seen us get on the plane so he waited for us to get off and then helped carry our bags to our connecting gate. This was a big deal because it was a very long walk! Thanks Dan! He also ended up with my dad's cell phone and will be taking it back to him in a couple days.
I am doing okay. The trip went well besides the few "exciting" events but I was pretty thankful to find a place to lay down for a while when we got to the hotel. We just had supper in the hotel and they had fantastic fish, which was a treat for both of us.
My test is scheduled for 1:30 tomorrow. We are praying that there are conclusive answers after the testing and that I will be on the road to recovery soon!
By the way, I have written about my sister Tami and her need for surgery. She is improving quickly although she has the restriction on lifting for another 3 weeks yet. The great news is that the pathology reports came back clear so she will not have to worry about further treatments for cancer. We are so thankful!
Monday, December 5, 2011
Monday
Thankfully, I woke up feeling better today. I'm still maybe slightly worse than I was the last few weeks, but it feels much more tolerable after a day like yesterday. It is hard to understand what triggers things like that. Just a random migraine in the middle of other things? We are praying that I wake up okay tomorrow so that the trip is tolerable. Traveling on a day like yesterday would have been grueling and been done only through sheer grit. And I continue to pray that the Great Physician will guide the doctor's decisions to bring me healing.
**A big thank you to the Redeemer Girls Club for the goodies we just found by the door in the garage! What a treat! :)
**A big thank you to the Redeemer Girls Club for the goodies we just found by the door in the garage! What a treat! :)
Sunday, December 4, 2011
Sunday
Today has not been a good day. I woke up this morning with my head hurting more than it has for some time. When Kyle woke up this morning, I had him give me a shot. It helped some make it more tolerable, but the level of headache is still higher than it has been the last few weeks despite the shot. Another confirmation to me that going back to JH is the right decision.
Psalm 61:1-3
Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.
Psalm 61:1-3
Hear my cry, O God,
listen to my prayer;
from the end of the earth I call to you
when my heart is faint.
Lead me to the rock
that is higher than I,
for you have been my refuge,
a strong tower against the enemy.
Friday, December 2, 2011
Friday
I made it to one more event for Kylie! Difficult and I am a fool for trying it, but it did go okay. Kylie is in drill team and they went to state this week. Their team did great! It was a challenge for me between the travel and the competition itself. Kyle and the kids went into the auditorium and watched several hours of the competition. I had my wheelchair (which I really don't like but again it made it possible) which I sat in in a few places that were quieter. The first half I sat in a quiet corner, but then the last hour or two I sat out a little more in a main hall in hopes of seeing Kylie just once with her team. What a surprise when they all came walking by and stopped and then even took a picture! So I now have a picture of the drill team with me (in my wheelchair) and I got to see Kylie all ready to go for a performance. The trip home was tough but pain meds got me home and although it was hard, it was worth it again.
I don't remember writing what happened with the SC neurosurgeon after the spinal tap. As I suspected, he felt the number was at the low end of normal. He is willing to send me to a neurologist or consider doing an injection into the occipital nerve in an attempt to help the headache that way. The neurologist idea is not at all attractive to me since I have gone that route and have tried every drug combinations I think there could be. I am just not sold on the drug route again since that attempts to mask the symptoms rather than address the problem, and in my case it didn't really mask the symptoms, either. The second route is something we would consider but JH really felt a shunt patency test was important to first verify the shunt is working correctly. So rather than jumping into the injection (we don't feel a neurologist especially locally is going to help) we felt that we should see if there was something else to know.
The reassurance we have with Johns Hopkins is that their neurosurgery department is rated #1 in the nation and this small group of doctors I see specialize in the problem that I have. JH doesn't believe that the spinal tap is all that conclusive. They said that the books will say that it is the test to do, but clinically they have found that it can vary from day to day to time of day and be impacted by a variety of other factors. So I may have surgery, I may have the injection or who knows what other ideas they may have that they haven't mentioned. Whatever it is, I pray that I can improve and find contentment again in the place the Lord has placed.
I don't remember writing what happened with the SC neurosurgeon after the spinal tap. As I suspected, he felt the number was at the low end of normal. He is willing to send me to a neurologist or consider doing an injection into the occipital nerve in an attempt to help the headache that way. The neurologist idea is not at all attractive to me since I have gone that route and have tried every drug combinations I think there could be. I am just not sold on the drug route again since that attempts to mask the symptoms rather than address the problem, and in my case it didn't really mask the symptoms, either. The second route is something we would consider but JH really felt a shunt patency test was important to first verify the shunt is working correctly. So rather than jumping into the injection (we don't feel a neurologist especially locally is going to help) we felt that we should see if there was something else to know.
The reassurance we have with Johns Hopkins is that their neurosurgery department is rated #1 in the nation and this small group of doctors I see specialize in the problem that I have. JH doesn't believe that the spinal tap is all that conclusive. They said that the books will say that it is the test to do, but clinically they have found that it can vary from day to day to time of day and be impacted by a variety of other factors. So I may have surgery, I may have the injection or who knows what other ideas they may have that they haven't mentioned. Whatever it is, I pray that I can improve and find contentment again in the place the Lord has placed.
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