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!
Monday, May 9, 2011
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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