Monday, May 30, 2011
Memorial Day
A quiet day and week. For my head it is very good but for my heart it is a little harder. Kyle and our three older kids are going away today and will get home late tonight. Tara is still at my sister's house and will be coming home this evening. Tomorrow is a "normal" day and then Wednesday through Saturday Kyle and the kids will be going to the Black Hills for our family vacation. We had planned this before this headache "episode" began and I felt that they should really go even if I couldn't. Not so easy but I think it is best for the family. So it is going to be a little quiet around here.
Saturday, May 28, 2011
Saturday
The dates are finalized for the testing at Johns Hopkins. I will have two very full days of testing June 23 & 24. Then June 27 thru July 1 I will be hospitalized so that they can monitor my intracranial pressure, or in other words the spinal fluid pressure in my brain. We know that they should get the results of the first tests while I am in the hospital. The hope is that they will have a treatment plan by the time I am released. They have assured us that IF a surgery is necessary that it would be done while I am there. So the return is rather open ended at this point. We are thankful that the plans are laid out now and are praying that they will find answers to give me relief.
Friday, May 27, 2011
Friday
My headache overall has not been as intense the last few days as I've had other days. It seems like I will have some hours in the day of higher intensity and then it will become more tolerable. I feel like even though the headache has been a bit more manageable, my ability to process things and handle stimulation is gradually becoming worse. It doesn't always make sense to me, or probably anyone else, but I can't look around much or have things that are moving around me. For example, I can't stand to have a ceiling fan on. Even if it is in my periferal vision the movement is intolerable. I drive very little and this morning after taking Kylie to the office I decided that I probably shouldn't do that anymore. It is hard to process everything necessary to drive.
If more than one person is talking or there is other noise, I struggle to process the conversation. However, I have been able to handle normal/soft voices a little better sometimes. Very strange things and it is driving me crazy!
Today is the last day of school. I used to look forward to the days of no school because I was able to spend more time with my kids. That is now more of a challenge, though, and I am concerned about how this is going to go.
If more than one person is talking or there is other noise, I struggle to process the conversation. However, I have been able to handle normal/soft voices a little better sometimes. Very strange things and it is driving me crazy!
Today is the last day of school. I used to look forward to the days of no school because I was able to spend more time with my kids. That is now more of a challenge, though, and I am concerned about how this is going to go.
Wednesday, May 25, 2011
Wednesday
Kylie graduated from 8th grade tonight! I am so proud of her! I will have to add pictures sometime because she was just radiant--so excited about this day. :) Bethany fixed her hair and she wore the dress that she bought with some friends when they went shopping with their orchestra teacher last summer.
I find today that I need to repeat over and over, "I am thankful, I am blessed, I am thankful . . .) I am working very hard to choose to be thankful that I could be at the chapel this morning even if I only was able to watch and listen to Kylie's faith statement. This evening I was able to watch the graduation from the cry room. It is hard to focus on not being able to be a part of the full chapel, or to sit in the audience watching Kylie and then go to the back to congratulate all the graduates. Why is it so easy to focus on the negatives? So each time my mind wonders that way, I am forcing myself to say over and over, "I am blessed. I am thankful." etc. And I really am, whether I remember it each moment or not.
I find today that I need to repeat over and over, "I am thankful, I am blessed, I am thankful . . .) I am working very hard to choose to be thankful that I could be at the chapel this morning even if I only was able to watch and listen to Kylie's faith statement. This evening I was able to watch the graduation from the cry room. It is hard to focus on not being able to be a part of the full chapel, or to sit in the audience watching Kylie and then go to the back to congratulate all the graduates. Why is it so easy to focus on the negatives? So each time my mind wonders that way, I am forcing myself to say over and over, "I am blessed. I am thankful." etc. And I really am, whether I remember it each moment or not.
Tuesday, May 24, 2011
Tuesday
Happy birthday to our son, Tanner! He is 16 as of yesterday. He gets his drivers license today and is pretty excited about that!
I woke up feeling much better than normal yesterday! I decided that I needed to get out so I went to the office for a bit. I overdid it there and so I came home to rest. I also hit a part of my kids' concert last night, but had to leave well before it was done because I was miserable. So this morning I am paying the price, not feeling so well. I am trying physical therapy for the second time today and have a haircut but I am going to have to really watch it since tomorrow is Kylie's big day. She graduates from 8th grade! No parties for now, but I so hope I can get through the graduation and maybe even the chapel in the morning because she will be reading her faith statement. (The chapel will be pushing it, though, because the sound in the gym is terrible for me!) I am very grateful to a friend for arranging for me to possibly sit in a separate, quiet room during the graduation where the sound can be controlled and I won't be in the middle of the activities but can watch. That will make that much more doable. :)
I woke up feeling much better than normal yesterday! I decided that I needed to get out so I went to the office for a bit. I overdid it there and so I came home to rest. I also hit a part of my kids' concert last night, but had to leave well before it was done because I was miserable. So this morning I am paying the price, not feeling so well. I am trying physical therapy for the second time today and have a haircut but I am going to have to really watch it since tomorrow is Kylie's big day. She graduates from 8th grade! No parties for now, but I so hope I can get through the graduation and maybe even the chapel in the morning because she will be reading her faith statement. (The chapel will be pushing it, though, because the sound in the gym is terrible for me!) I am very grateful to a friend for arranging for me to possibly sit in a separate, quiet room during the graduation where the sound can be controlled and I won't be in the middle of the activities but can watch. That will make that much more doable. :)
Sunday, May 22, 2011
Sunday
I am sitting alone in my home reflecting as my family worships together with our church family. It is a lonely and sad thing to me, not to be able to worship together with God's people. I worship at home, listen to sermons while they are gone, read God's Word and pray, but it is never the same. I long for the day that I can enter the Lord's presence again in corporate worship of Him. Don't take it for granted! The freedom and privilege of going to God's house for worship is an awesome thing!
My headache seems to be not as bad the last few days, although it varies in intensity throughout the day and day by day. I can't find any rhyme or reason to it. I know that activity of almost any kind makes it worse but that is the only thing I can figure out. No activity in a home of six is nearly impossible. I can be completely inactive but the activity of others around me generates the stimulation that my brain just can't seem to handle. I notice that I am having some tremors, not so visible sometimes but another sign that my brain is not working the way it should.
I am going to end with a couple verses and a chapter that mean so much to me. Psalm 121 has been a favorite and one that I will often say to myself when I am being wheeled into surgery (and other times, of course!). I repeat it to myself until the anesthesia takes me away but it quiets my heart and gives me comfort particularly when I know that one small miscalculation while working in and around my brain can occur.
Psalm 121
I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.
He will not let your foot be moved, He who keeps you will not slumber. Behold, He who keeps Israel will neither slumber nor sleep.
The Lord is your keeper; the Lord is your shade on your right hand.
The sun shall not strike you by day, nor the moon by night.
The Lord will keep you from all evil; He will keep your life.
The Lord will keep your going out and your coming in from this time forth and forevermore.
Another of many comforting verses:
Psalm 138: 7-8
Though I walk in the midst of trouble, you preserve my life; You stretch out your hand against the wrath of my enemies, and your right hand delivers me.
The Lord will fulfill His purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands.
I have really liked Psalm 139 but those verses that end chapter 138 draw my attention time after time as well. My plan for my life certainly is not day after day home with often intense pain, but God does have a plan and I need to accept that. Not always so easy and I struggle greatly some days and weeks more than others, but a good reminder that my days are in His hands.
My headache seems to be not as bad the last few days, although it varies in intensity throughout the day and day by day. I can't find any rhyme or reason to it. I know that activity of almost any kind makes it worse but that is the only thing I can figure out. No activity in a home of six is nearly impossible. I can be completely inactive but the activity of others around me generates the stimulation that my brain just can't seem to handle. I notice that I am having some tremors, not so visible sometimes but another sign that my brain is not working the way it should.
I am going to end with a couple verses and a chapter that mean so much to me. Psalm 121 has been a favorite and one that I will often say to myself when I am being wheeled into surgery (and other times, of course!). I repeat it to myself until the anesthesia takes me away but it quiets my heart and gives me comfort particularly when I know that one small miscalculation while working in and around my brain can occur.
Psalm 121
I lift up my eyes to the hills. From where does my help come? My help comes from the Lord, who made heaven and earth.
He will not let your foot be moved, He who keeps you will not slumber. Behold, He who keeps Israel will neither slumber nor sleep.
The Lord is your keeper; the Lord is your shade on your right hand.
The sun shall not strike you by day, nor the moon by night.
The Lord will keep you from all evil; He will keep your life.
The Lord will keep your going out and your coming in from this time forth and forevermore.
Another of many comforting verses:
Psalm 138: 7-8
Though I walk in the midst of trouble, you preserve my life; You stretch out your hand against the wrath of my enemies, and your right hand delivers me.
The Lord will fulfill His purpose for me; your steadfast love, O Lord, endures forever. Do not forsake the work of your hands.
I have really liked Psalm 139 but those verses that end chapter 138 draw my attention time after time as well. My plan for my life certainly is not day after day home with often intense pain, but God does have a plan and I need to accept that. Not always so easy and I struggle greatly some days and weeks more than others, but a good reminder that my days are in His hands.
Friday, May 20, 2011
Friday
Three weeks today that this started.
It has been a little difficult to post primarily because I have been discouraged. I should be happy about the Johns Hopkins appointment, and I am, but it seems right now like a very long time away and it is hard to continue to have hope that I can get better.
I am making an effort to look at some positive in this and right now it isn't easy. But I know that my head does not hurt as bad as it has at certain times in the past. I am still significantly limited but I remember times that I had a hard time walking and when I would have earplugs on with the bedroom door shut and the kids walking through the next room would be too much. I wear earplugs at meal times now. We have also been able to figure out ways for me to go to a few things. The younger two had a concert so I went a bit late and stayed in the lobby with earplugs. Not ideal, but I was there. Today Kyle took me in the van to the parade. We used my handicap sign and parked in a handicap spot on the parade route. I stayed in the van with earplugs. I find that i have to close my eyes quite a bit because of the movement and I also put gunshot muffling headphones over my ears when the drums went by. Still a little too much, but I was there and saw Kylie do the flags in the parade.
There have been many times that I would not have been able to do these things, even times in this "episode" that I wouldn't have been able to. Am I thankful? Well, I am working on that. This has just been a really tough week on me.
It has been a little difficult to post primarily because I have been discouraged. I should be happy about the Johns Hopkins appointment, and I am, but it seems right now like a very long time away and it is hard to continue to have hope that I can get better.
I am making an effort to look at some positive in this and right now it isn't easy. But I know that my head does not hurt as bad as it has at certain times in the past. I am still significantly limited but I remember times that I had a hard time walking and when I would have earplugs on with the bedroom door shut and the kids walking through the next room would be too much. I wear earplugs at meal times now. We have also been able to figure out ways for me to go to a few things. The younger two had a concert so I went a bit late and stayed in the lobby with earplugs. Not ideal, but I was there. Today Kyle took me in the van to the parade. We used my handicap sign and parked in a handicap spot on the parade route. I stayed in the van with earplugs. I find that i have to close my eyes quite a bit because of the movement and I also put gunshot muffling headphones over my ears when the drums went by. Still a little too much, but I was there and saw Kylie do the flags in the parade.
There have been many times that I would not have been able to do these things, even times in this "episode" that I wouldn't have been able to. Am I thankful? Well, I am working on that. This has just been a really tough week on me.
Wednesday, May 18, 2011
Wedneday & new baby!
Still no word.
I have been struggling with discouragement and feel like I am on the verge of tears a lot of the time. It seems to be a never ending thing. I love to go to sleep at night (with my sleeping pill) and I wake up dreading another long day.
It has been nearly five years since this has become a significant problem. I always think of July 2006 as being the start, although I know that it started at least a year or two earlier than that but it was gradual enough that I could ignore it or at least work through it. I pray that there is an end to it. Tara was nearing 3 and Riley was 4 when I started the battle in earnest with this. They don't know what it is like to have a mom that is normal. They have been told nearly their entire life to talk quietly, walk quietly, be careful around mom, etc. I have missed countless programs, recitals, games and just normal life stuff with all my kids. I am getting to the point that I just don't know how to deal with this anymore.
I can see little good in this, but there is some very great things. I pray much more than I ever did. I am much more diligent in my Bible reading and devotions. My relationship with the Lord is much stronger in part because I have had to trust when I just don't see how to take another step. These are very good things, but I continue to pray that I have learned and that I can become healthy and yet continue growing in the Lord.
One more positive! Tami had her baby yesterday and she was blessed with a beautiful baby girl. Payten Danielle was born at 1:19 pm and is 8 lbs 10 oz. She is beautiful! It was just about 2 years ago that Tami surprised me by visiting me in the hospital with her newborn son. How can my baby sister have two little ones already?
I have been struggling with discouragement and feel like I am on the verge of tears a lot of the time. It seems to be a never ending thing. I love to go to sleep at night (with my sleeping pill) and I wake up dreading another long day.
It has been nearly five years since this has become a significant problem. I always think of July 2006 as being the start, although I know that it started at least a year or two earlier than that but it was gradual enough that I could ignore it or at least work through it. I pray that there is an end to it. Tara was nearing 3 and Riley was 4 when I started the battle in earnest with this. They don't know what it is like to have a mom that is normal. They have been told nearly their entire life to talk quietly, walk quietly, be careful around mom, etc. I have missed countless programs, recitals, games and just normal life stuff with all my kids. I am getting to the point that I just don't know how to deal with this anymore.
I can see little good in this, but there is some very great things. I pray much more than I ever did. I am much more diligent in my Bible reading and devotions. My relationship with the Lord is much stronger in part because I have had to trust when I just don't see how to take another step. These are very good things, but I continue to pray that I have learned and that I can become healthy and yet continue growing in the Lord.
One more positive! Tami had her baby yesterday and she was blessed with a beautiful baby girl. Payten Danielle was born at 1:19 pm and is 8 lbs 10 oz. She is beautiful! It was just about 2 years ago that Tami surprised me by visiting me in the hospital with her newborn son. How can my baby sister have two little ones already?
Tuesday, May 17, 2011
Friday, May 13, 2011
discouragement
I see that my Wednesday post is back up.
This afternoon I found out that the ns in we hoped would adjust the shunt is declining me as well. He also said that it is not a shunt issue. Interestly, he used the exact same words that Puumala (sf ns)used, so my guess is that he called Puumala and decided to follow him. Hard to say. Maybe I am just crazy and it isn't a shunt issue. It is hard not to question myself. I was expecting this, but it still is a blow to hear the words again. I am trying to focus on the Johns Hopkins avenue, but I have many more weeks of this headache to endure until then. Some days I think that I can handle it and some days I am pretty sure that I won't make it till then. The hardest part is that there are so many things I don't want to miss. The biggest is Kylie's 8th grade graduation. What do I do? I have been such a burden to those close to me and I want that to end.
This afternoon I found out that the ns in we hoped would adjust the shunt is declining me as well. He also said that it is not a shunt issue. Interestly, he used the exact same words that Puumala (sf ns)used, so my guess is that he called Puumala and decided to follow him. Hard to say. Maybe I am just crazy and it isn't a shunt issue. It is hard not to question myself. I was expecting this, but it still is a blow to hear the words again. I am trying to focus on the Johns Hopkins avenue, but I have many more weeks of this headache to endure until then. Some days I think that I can handle it and some days I am pretty sure that I won't make it till then. The hardest part is that there are so many things I don't want to miss. The biggest is Kylie's 8th grade graduation. What do I do? I have been such a burden to those close to me and I want that to end.
Friday
I'm not sure why, but this blog site deleted my last post about going to Johns Hopkins that I posted Wednesday I think. I haven't heard more since then. My head was pretty bad Thursday but today is more tolerable. If the other post isn't restored, I might just write it again so I remeber how this all has happened.
Wednesday, May 11, 2011
Wednesday
Yesterday came and went with no news. However, today I did get very good news! The Johns Hopkins doctor has reviewed my medical records, surgical reports and lengthy application and has said they would like to see me! It kind of sounds like they are actually interested in my case where so far doctors have not wanted to see me because of the complexity of my problem. We don't have many details yet, but it sounds like I will go there mid-June. It may take 1-2 weeks because they have many tests they want to run, including a week hospitalization where they will monitor the pressure in my head. Hopefully we will hear more once they have worked on scheduling everything, but we feel that this is a big step in the right direction. Perhaps the most encouraging thing we heard is that when my sister Renae (who has been setting this all up) asked if they felt that they could help me, the nurse replied that she was very confident that they could help me! Wow!
I still have not heard from the doctors that we are hoping will do the shunt adjustment. I have a feeling that we are still going to have a hard time getting that done. Kyle asked me today how I felt about living the way I am until we go to Baltimore, and I suspect that might be what will happen.
This week has been going a little better for me. I have been able to get to the office in the morning for an hour or so to go through some paperwork, etc. Although I am not so productive, it has been nice to get out of the house. I have driven a few times when I felt well enough to. Last night Kylie had a choral concert and so Kyle texted me when her group was going up and I walked in and sat on a chair in the reception area where the noise is muted and wore my earplugs. I stayed just during the part she was in and then quickly left because I can't handle the noise or the movement with all the people walking around but was pretty happy that I did get that in. This morning I felt better than most mornings, and now tonight my head is hurting quite a bit more. Hard to understand why it changes so much, but I guess I just need to take it as it comes.
I still have not heard from the doctors that we are hoping will do the shunt adjustment. I have a feeling that we are still going to have a hard time getting that done. Kyle asked me today how I felt about living the way I am until we go to Baltimore, and I suspect that might be what will happen.
This week has been going a little better for me. I have been able to get to the office in the morning for an hour or so to go through some paperwork, etc. Although I am not so productive, it has been nice to get out of the house. I have driven a few times when I felt well enough to. Last night Kylie had a choral concert and so Kyle texted me when her group was going up and I walked in and sat on a chair in the reception area where the noise is muted and wore my earplugs. I stayed just during the part she was in and then quickly left because I can't handle the noise or the movement with all the people walking around but was pretty happy that I did get that in. This morning I felt better than most mornings, and now tonight my head is hurting quite a bit more. Hard to understand why it changes so much, but I guess I just need to take it as it comes.
Tuesday, May 10, 2011
Happy Anniversary
Today is our 20th anniversary. I am hoping that the day brings good news and not more discouragement!
Monday, May 9, 2011
Monday
There is something so hopelessly frustrating about knowing the probable "fix" for my headache is a non-invasive 30 second procedure. I have had 1 week and 3 days of unnecessary pain because of the arrogance of a neuro-surgeon that can't admit that a fix that isn't his idea isn't going to work. Okay, I have that said and off my chest.
Yes, I am frustrated. Today has been a little better again, but I just need to be better. I have a busy family that needs me! I am missing games and activities (and work) and it is just driving me crazy! Please pray that we can find a doctor that will adjust this shunt!
Yes, I am frustrated. Today has been a little better again, but I just need to be better. I have a busy family that needs me! I am missing games and activities (and work) and it is just driving me crazy! Please pray that we can find a doctor that will adjust this shunt!
Saturday, May 7, 2011
Saturday
I am doing a little better today! I am a ways from being where I was before this started, but functioning a little more. This morning I even met a few people to visit at the bakery. It feels so good to be able to get outside. I have started pain medication today and I will see how that goes but hopefully it will make life a little more tolerable. I am still very sensitive to a variety of things, including noise, movement and bright light. My ears are ringing loudly all the time now where in the past I always have the ringing but it varies in volume.
It seemed like I was at the end of the road again and the Lord has opened a small door again. Renae visited with me and as we talked we decided to call the one other doctor that uses the brand of shunt that I have. That doctor is not taking new patients, but the receptionist gave Renae the name of the shunt rep. She talked to him and he was quite sympathetic to my situation. He told her that people that have what I have often do need the pressure adjusted periodically. (That is the reason I have an adjustable shunt!) He mentioned a nurses daughter that has hers adjusted about every 6 months! He said that he would work to find a neurosurgeon that would be willing to work with me so we are holding out hope that this might produce a result. It is hard to get to hopeful because there have been so many disappointments but I am thankful that this may bring an answer.
Once again an answer to prayer.
It seemed like I was at the end of the road again and the Lord has opened a small door again. Renae visited with me and as we talked we decided to call the one other doctor that uses the brand of shunt that I have. That doctor is not taking new patients, but the receptionist gave Renae the name of the shunt rep. She talked to him and he was quite sympathetic to my situation. He told her that people that have what I have often do need the pressure adjusted periodically. (That is the reason I have an adjustable shunt!) He mentioned a nurses daughter that has hers adjusted about every 6 months! He said that he would work to find a neurosurgeon that would be willing to work with me so we are holding out hope that this might produce a result. It is hard to get to hopeful because there have been so many disappointments but I am thankful that this may bring an answer.
Once again an answer to prayer.
Friday, May 6, 2011
Friday
Another dead end road. I seem to find a lot of those, but the Lord has opened another path for me each time, and I am praying that I find the path that I must take or find contentment in the situation I am now in.
The ns in SF, Dr Puumala, refuses to adjust the shunt. He does not believe that it provided the relief that I experienced last time and will not consider doing it again. After much frustration, I have decided that I need to accept this and go on. I don't think any other ns that works with this shunt will adjust it either, since they don't like to work on another surgeon's work. Adjusting the shunt is a simple procedure that uses a specific tool made for this brand of shunt. They set it near the shunt valve behind my right ear, press a button and it adjusts. However, you have to have the computerized tool to do it.
We will wait to hear from Johns Hopkins and see if they will consider seeing me. I am going to explore my pain medication options and see if we can make something work for now.
This is really hard, but I am trusting that the Lord does have a plan. I may wake up tomorrow and the pain may be reduced again. If it can intensify suddenly, it can be relieved suddenly, too. The verse that I learned when I was young runs through my mind. "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him, and He will direct your paths." At the moment I don't remember where it is found but I know that God is good all the time, and I need to trust Him in this.
The ns in SF, Dr Puumala, refuses to adjust the shunt. He does not believe that it provided the relief that I experienced last time and will not consider doing it again. After much frustration, I have decided that I need to accept this and go on. I don't think any other ns that works with this shunt will adjust it either, since they don't like to work on another surgeon's work. Adjusting the shunt is a simple procedure that uses a specific tool made for this brand of shunt. They set it near the shunt valve behind my right ear, press a button and it adjusts. However, you have to have the computerized tool to do it.
We will wait to hear from Johns Hopkins and see if they will consider seeing me. I am going to explore my pain medication options and see if we can make something work for now.
This is really hard, but I am trusting that the Lord does have a plan. I may wake up tomorrow and the pain may be reduced again. If it can intensify suddenly, it can be relieved suddenly, too. The verse that I learned when I was young runs through my mind. "Trust in the Lord with all your heart and lean not on your own understanding. In all your ways acknowledge Him, and He will direct your paths." At the moment I don't remember where it is found but I know that God is good all the time, and I need to trust Him in this.
Wednesday, May 4, 2011
Wednesday
Another day. My head is still not good. I really don't have any answers, though. Waiting to hear from the ns in sf to see if he will adjust the shunt.
Kyle is sending off my records to Johns Hopkins today, so we will see what they say. I haven't heard from the U of Minnesota yet, so I am not sure what that means.
This is such a busy time for this to be happening! Kyle is doing a great job keeping up with things, but it is driving me crazy!
Kyle is sending off my records to Johns Hopkins today, so we will see what they say. I haven't heard from the U of Minnesota yet, so I am not sure what that means.
This is such a busy time for this to be happening! Kyle is doing a great job keeping up with things, but it is driving me crazy!
Tuesday, May 3, 2011
Tuesday
I had the spinal tap this afternoon. I really hate having those done! The result came back with a pressure a little lower than the last time in February. That is odd in a way, although kind of what we expected. The reason that it is strange is that after the last reading the shunt setting was adjusted to increase the pressure a little bit, so the number should have been higher than the last time. It makes me wonder if the shunt pump is not working correctly.
I am waiting now for calls from the ns in SF & Milwaukee. I am hoping SF will adjust the shunt again, although he is the one that was so awful to me last time so we don't know what to expect. The ns in Milwaukee hopefully will call. I left a message explaining what has happened and questioning whether the shunt valve/pump could be faulty or what else could be causing this. Now it is a wait and see.
Since the spinal tap was at about 12:30 this afternoon, I will be laying down the rest of the day and praying that the puncture will seal so that I don't have additional leakage like last time which caused the headaches to be much worse. If it does leak, there is a procedure called a blood patch that they will do tomorrow in hopes of sealing the puncture. Hopefully that won't be necessary.
I am waiting now for calls from the ns in SF & Milwaukee. I am hoping SF will adjust the shunt again, although he is the one that was so awful to me last time so we don't know what to expect. The ns in Milwaukee hopefully will call. I left a message explaining what has happened and questioning whether the shunt valve/pump could be faulty or what else could be causing this. Now it is a wait and see.
Since the spinal tap was at about 12:30 this afternoon, I will be laying down the rest of the day and praying that the puncture will seal so that I don't have additional leakage like last time which caused the headaches to be much worse. If it does leak, there is a procedure called a blood patch that they will do tomorrow in hopes of sealing the puncture. Hopefully that won't be necessary.
Monday, May 2, 2011
Monday
I did cancel the spinal tap because I didn't feel like I had enough answers or enough information to proceed. However, I am working on rescheduling it now and hope to have it maybe Tuesday or Wednesday.
Today was spent quietly spending time periodically on the computer looking now for a neurologist (versus a neurosurgeon) that would work with me, has experience in what I have and is within driving distance. It is tedious because it isn't very searchable. I have found that I need to search for a list of neurologists in a certain area, then look at each individual profile to see if a doctor will list it as an additional interest. I thought I found one today. He specializes in multiple sclerosis, but his additional interest is pseudotumor cerebri. However, he is a neuro-opthomologist and besides seeing ms patients, he only sees ptc patients that have problems with their eyes. I don't, so he won't consider seeing me. He is in Minneapolis, and I am searching that area right now. This search for a doctor continues to be so discouraging. I feel like I have leprosy or something untouchable that doctor's are afraid of. Who would guess that this would be so difficult!
I am still not certain if my pressure is high or low although I suspect it may be low again since the headache, except for the first day, is not as extreme as it often seems to be when it is high. It makes me wonder if something is wrong with the valve (or pump) part of the shunt, but I'm not sure. The SF ns was adamant last time that they never malfunction, but I don't trust his judgement.
One step at a time, though. We will see what my pressure number is and then figure out where to go from that point. Right now I really don't know what will happen next. The Lord knows, though, and we continue to pray for His guidance.
Today was spent quietly spending time periodically on the computer looking now for a neurologist (versus a neurosurgeon) that would work with me, has experience in what I have and is within driving distance. It is tedious because it isn't very searchable. I have found that I need to search for a list of neurologists in a certain area, then look at each individual profile to see if a doctor will list it as an additional interest. I thought I found one today. He specializes in multiple sclerosis, but his additional interest is pseudotumor cerebri. However, he is a neuro-opthomologist and besides seeing ms patients, he only sees ptc patients that have problems with their eyes. I don't, so he won't consider seeing me. He is in Minneapolis, and I am searching that area right now. This search for a doctor continues to be so discouraging. I feel like I have leprosy or something untouchable that doctor's are afraid of. Who would guess that this would be so difficult!
I am still not certain if my pressure is high or low although I suspect it may be low again since the headache, except for the first day, is not as extreme as it often seems to be when it is high. It makes me wonder if something is wrong with the valve (or pump) part of the shunt, but I'm not sure. The SF ns was adamant last time that they never malfunction, but I don't trust his judgement.
One step at a time, though. We will see what my pressure number is and then figure out where to go from that point. Right now I really don't know what will happen next. The Lord knows, though, and we continue to pray for His guidance.
Sunday, May 1, 2011
Sunday
Another Sabbath day at home--I would so prefer to be in church!
I am struggling with what to do next. Honestly, I would prefer that either the headache be much worse or better. This headache is bad enough that I can't tolerate much noise at all, but it is not bad enough that I feel miserable. It is hard going into a spinal tap not feeling miserable! :) So I am really thinking about not having it, but of course then I don't have a next step.
Although it would have been wise, I have not sent my medical records and scans to the doctors that I have mentioned before. Each week would begin and I would determine to do it and the end of the week would arrive and it wasn't done. In all honesty, I could have made it a priority. It has just been such a negative experience in the past that I just haven't wanted to deal with it. It is very disheartening to have specialists decline seeing me or not schedule appointments and plain out ignore me. I understand, to a point, why this happens but it is still discouraging. So now here I am with increased symptoms again and no where to go. Foolish me.
I am struggling with what to do next. Honestly, I would prefer that either the headache be much worse or better. This headache is bad enough that I can't tolerate much noise at all, but it is not bad enough that I feel miserable. It is hard going into a spinal tap not feeling miserable! :) So I am really thinking about not having it, but of course then I don't have a next step.
Although it would have been wise, I have not sent my medical records and scans to the doctors that I have mentioned before. Each week would begin and I would determine to do it and the end of the week would arrive and it wasn't done. In all honesty, I could have made it a priority. It has just been such a negative experience in the past that I just haven't wanted to deal with it. It is very disheartening to have specialists decline seeing me or not schedule appointments and plain out ignore me. I understand, to a point, why this happens but it is still discouraging. So now here I am with increased symptoms again and no where to go. Foolish me.
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