Monday

Time seems to be creeping by. Why does time fly when you are having fun but barely move when life is tough?

Another day of challenges. I suspect that I have been having spinal fluid leaking since the spinal tap, which is probably what has intensified the headache so much. I am finding that if I lay down for most of the day I can control the pain a bit and today I was able to be up a little more before it became unbearable. I can have a blood patch done, which seals the small hole in the spinal cord but I think that I will just let it heal on its own at this point and stay down.

Another disappointment--my local doctor once again applied for me to go to Mayo and we got the rejection letter today. It is discouraging to be rejected by a hospital that is supposed to be for difficult cases. The letter is vague but I think that they believe there isn't much else to do.

My sister Renae is getting records together and we are going to send them to UCLA and a univerity ns group in St Louis and a university ns in Columbus Ohio. They were each chosen for the fact that they have each worked with at least once case like mine. So we will see if I will get the acceptance letter or rejection letter from those, but at least we aren't counting on just one.

Sunday

I have found that if I stay laying down for quite a while that my headache is more manageable. The longer I am up the worse it gets, which to me (non neurosurgeon that I am) indicates a low pressure problem. My family is getting involved to help me get some help somewhere. They have some ideas but we are a ways from answers at this point. Living in the midwest does limit my options that seem more doable.

Saturday

I am not so confident that the drug coctail is going to work. The second dose was this morning. It gives me some relief but not dramatic. It has gotten stronger this afternoon so Kyle just gave me another shot. One more day and then we may need to come up with a new plan.

Friday continued

I had the drug cocktail this morning which was a good thing because the headache was very strong again. It helped for several hours but by 4:00 I was quite miserable again. Kyle gave me a shot at 5:00 which has made it bearable. I'm hoping that tomorrows second iv dose will give more long lasting relief.

Friday

My greatest fear was realized. . . Dr Heffez said there isn't anything he can do.

I called my doctor in RV and we are going to try an iv drug coctail for three days in a row in hopes that this is just a "normal" headache and that the drug will break it. I am praying that this will work.

Thursday continued

I guess the headache was more than slightly stronger. I tried a few of the things that will sometimes give me a touch of relief but instead it continued getting stronger. By lunch time when Kyle came home he decided that I probably should have a shot to ease the pain. It is still quite strong but a bit more manageable than before the shot. I have stayed away from any meds (except the Sunday it started) just so that I could truly gauge where I am pain wise. Today it was well worth giving in on that. I don't think any of this is related to the spinal tap simply because I didn't feel much different yesterday afternoon/evening when I usually will feel different.

Romans 5:3 & 4 More than that, we rejoice in our sufferings, knowing that suffering produces endurance and endurance produces character and character produces hope. . .

Romans 12:12 Rejoice in hope, be patient in tribulation, be constant in prayer.

Great reminders to me that my situation is not hopeless no matter how it appears to me sometimes.

Thursday

I was able to have the spinal tap yesterday afternoon in RV. The pressure came back lower than it ever has. I really don't know what the next step is. I have such a fear that he will tell me that he is sorry and there is nothing that he can do. I don't think I can live this way.

His office called yesterday saying that he will call either late today or tomorrow since today is his surgery day again.

The headache is slightly stronger today.

call came

This afternoon the neurosurgeon called. I have to admit that this stage of the game is always a bit discouraging to me. I do need to have a spinal tap--no wiggling out of that one! I am waiting now for it to be scheduled.

He reviewed the ct scans and is disappointed that the ventricle isn't puffed up at all. So either that means that my pressure isn't up or it means nothing. It seems very likely to me that the pressure is up because all of the signs are there, yet in a way I have a fear that isn't because if not I just don't know what I will do. True, I wouldn't have shunt surgery but then I don't have a "cure" or fix which scares me badly. Nothing like honesty but I am just writing how I am feeling right now.

Since the ventricle is so tiny, he doesn't think that he will succeed in getting the tubing into my brain this time. The next option in a lumbar shunt which is placed in the lower spine/spinal cord. That is not a good option for me because a lumbar shunt is known to gradually cause chiari, so they are definitely not recommended for chiari patients, which I am. The doctor had considered this option previously when I had the surgery putting the left shunt in. When I went into surgery he had determined to try to get it in the left side as the best option, but if it didn't work he was going to place the lumbar shunt. He was happy about getting it in my brain last time and reluctant to go now to a lumbar shunt.

So the news is disheartening. I know that God is in control and nothing happens outside of His will for my life. I trust Him and know that He has a plan for me. Right now I wish that plan wasn't quite so painful or difficult.

Monday

Well, Dr Heffez is just not meant to get my scans today. They were picked up Saturday, but due to the awful weather we've had, I don't think the package has even left Sioux Falls yet.

I am having an interesting problem. My headache is still there, still the "different" headache which tells me that my spinal fluid pressure is off, still very sensitive to noise, light, etc., but it isn't really bad. Now normally I would appreciate that because who would want to have pain any more than they have to? However, this is putting me into a middle ground that I'm not so comfortable with. When it is really bad there is not doubt that I need surgery as quickly as possible. If it would go away, I wouldn't need surgery at all. Being in the middle, though, is a bit harder. The headache is bad enough that I can't think through things, can't handle much at all, but it isn't so desperately bad. Will he want me to wait until I am desperate? And if he does, what do I do in this "in between" time? It would drive me crazy sitting here indefitinely but I am not good enough to do my job. So I am praying that it will either get worse so that the choice is obvious, or that the headache improves significantly and the spinal pressure symptoms start decreasing. Life just stays interesting around here!

Saturday

Nearly a week now of this new, and yet old headache. It really feels like I didn't have a break, like it is a continuation of the pain two years ago. It doesn't seem to end sometimes. That being said, today has been the best day that I've had this week. Yes, I still have the headache and it is still challenging but it seemed like a little more doable today. I am thankful that this has been my good day since it is a Saturday with the kids home. They did all seem to go in different directions throughout the day, which was nice in keeping the noise level down.

The medical records at McKennan continued to be quite a fiasco. I asked Renae to follow up today just because I wasn't so confident in them getting the package out today. Good thing she did because they made a disc with the wrong info again. For some reason, they continue to to copy old scans instead of the most recent ct scan and shunt series done last Sunday at the ER. In addition, they hadn't actually gotten FedEx scheduled to pick up. Renae called FedEx to confirm that they were planning the pickup and they had nothing on their schedule. So she scheduled it and asked radiology to make the disc while she was on the phone so they could repeat to her exactly what they copied. If she hadn't followed up, it wouldn't have gone out till Monday and on Tuesday when it was opened they would have found the wrong scan again. Unbelievable! I am so thankful that she took care of this because I just can't deal with things so well.

The kids all seem to be taking this in stride, although they are all nervous. My attitude is better today than yesterday but I am just trying not to think about all this so much. It is hard to know how to go on thinking about the long term logistics of all of this. So, just one day at a time for now. Kyle and I did talk tonight about the many things that we have to be thankful for, and there are many. Sometimes the negatives are so overwhelming that we just had to step back and list how the Lord has provided for us through this journey.

Some days. . .

I found out this afternoon that the lady at McKennan overnighting the records that were missing last time she sent them probably sent the wrong things again! They are now saying that they will make the copy and send it out on Monday, which means that my ns won't have them until Tuesday. I'm not sure why the mistake happened the first time because I told her exactly what I needed and the dates. The second time all she had to get was the tests from the ER on Sunday and she knew that they were the ones missing. However the lady that answered the phone today read the record of what was sent and it was still the wrong info. I am very frustrated! Each delay is just more waiting in more pain that what I would prefer to have.

Thursday

Today Dr Heffez called. Unfortunately when I ordered my ct scans & shunt series from McKennan and overnighted it, they missed the records from Sunday's ER visit. Gr. . . so they finally found the scans after I called them today and they are now being overnighted. The bad news is that the doctor is out tomorrow and is in surgery on Monday. So this delay is significant to me because the surgery can't be scheduled until he has reviewed these and possibly had me do a spinal tap. I am going to beg him to let me skip the spinal tap--I hate those! But I probably will need it and once that result is called in I would hope that the surgery will be scheduled.

This morning I woke up feeling a little better so I decided to go to the office to take care of a few things. It did confirm in my mind that I need to get something done. I just can't think through things which is so frustrating! As before, I move slowly. My balance is off so I turn slowly so that I won't fall over. I can't handle much noise or light. And I have that "look" again that means that even strangers recognize that there is something wrong with me.

It is hard to be back on this road again. It seems like just yesterday that I was going down this path. Please pray for strength for me and my family. This has been hard for all of us to deal with again and rather scary to think that this might be how things go every 1.5 to 2 years. Overwhelming right now.

Tuesday

A quick update with good news! Dr Heffez in Milwaukee will continue to work with me! That is a huge relief! So I am gathering records and sending them to him for review.

The headache continues about the same. I would prefer that it either get better--so I don't have to worry about the shunt--or get worse. If the headache is absolutely intolerable going into brain surgery is, well, a no-brainer. I can't really live with the headache the way it is but it isn't so awful that I just absolutely can't stand it. No headache would be a huge answer to prayer and something that I long for!

Two posts in one day!

Today has been interesting. My head has stayed about the same--not getting worse which is great, but not getting better which is a bit discouraging. At this point I am praying that this is just a bad headache. At worst, the shunt is malfunctioning and will need to be redone.

The local neurosurgeon is now off the list of possibilities. He told me today that he would not work on my shunts "unless I am dying." Well, I might get there if my shunts are malfunctioning but I'm not there yet! He took care of me with the infection because I would die without treatment. Otherwise, he told me that he just doesn't work with shunts unless it is a life or death situation. That being said, quality of life means nothing. Eventually if my shunts are not functioning, I may go blind and then I would die. I really don't want to let it go that far! :) On the bright side, I am glad that he was honest enough to say that he generally doesn't work with shunts except in an emergency situation because I would prefer to have a ns that has worked with situations like mine before and is comfortable with it.

We are waiting to hear from the neurosurgeon (ns) in Milwaukee again. I think so highly of him and hope that he may be willing to help me if I do need it. We also know of a ns in Los Angeles and another in Columbus, Ohio. Since I haven't had an appointment with either of them if I need a shunt surgery soon because of the current events they are probably not going to be an option since new ns's generally take time to get an appointment with, allow them to do their own tests and then proceed to the proper treatment. I originally had an appt with the doctor in Ohio but ended up being in the hospital for the infection during the time that it was scheduled. He was 1 1/2 months out at the time that I scheduled with him. If this is indeed a shunt malfunction I won't be able to wait 1.5 months. So tomorrow will be another telling day. We'll see how I am feeling. I know the Lord is directing my steps, so we will trust that He has a plan. Ironically, I had put the verse a couple posts down the night before this started. I had no idea that this was coming! The Lord was preparing me with words of comfort when I would need them. :)

Well. . .

I had an unplanned trip to McKennan yesterday. I woke up early to my head hurting very badly, and it just became worse as the minutes ticked by. I became very nauseated and my head felt like it was exploding again. Not good. That being said, I haven't had the best of experiences with emergency rooms (except rv). Typically the on duty doctor has the mission of trying to make you feel better and sends you home. They gave me drugs and sent me home.

My head isn't as bad as yesterday but still pretty painful. I'm not sure what is going on but am quite concerned about the shunts. I am waiting now for a call from the local neurosurgeon and am hoping he will see me today. I also put a call in to my neurosurgeon in Milwaukee to see what his thoughts are for shunt options if I am indeed going down that road again.

Please pray for me!

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 decided to visit the neurosurgeon here and see what he thinks about the idea of a new shunt and if he would be a back up if I have problems assuming that I were to go ahead with it. After seeing what he has to say, we will consider what the next step will be. Please pray that the doors will open and close as the Lord wills it.

Wow!

A lot has happened in the last little while and I think I will just start writing about it and see how far I get. :)

A little while ago I mentioned that I had received a book from my aunt about a lady that I suspected has one of the same disorders that I have--Intracranial Hypertension, also known as pseudo-tumor cerebri. Since that time I have actually talked to her by phone a couple times and we were able to share our stories. Her's is amazing!

In the course of the conversation, she told me that she sees the top neuro-surgeon at the UCLA Medical Center and asked if I could come and see her doctor there. She has a unique shunt that could possibly eliminate the headaches that I still have all the time. She has not had headache issues since having this particular shunt. Initially we have been very excited about this, but now the logistics of it all are quite overwhelming to me. I can't deal with a lot of things at the same time, and with the stress of Pizza Fresco closing, handling things at the office and the normal craziness of life, I am having a hard time processing all this. I decided that I need to start writing about this. Sometimes if I put it in writing I can think through it just a little more clearly and hopefully it won't seem quite as daunting.

Here are the challenges that we are contemplating.

1. Are my headaches truly caused by the shunt not functioning effectively? Could it possibly be something else--the Chiari side effects? The continualy changing weather? Or could I possibly not be able to get over the headaches & related issues because of all of the above?

2. What happens if I have this surgery in California and need multiple revisions like before? Driving to Milwaukee was more doable than flying to California repeatedly.

3. If I have a new & different shunt put in, will the neurosurgeon locally decline seeing me again for adjustments like before? Would any setting changes always have to be done in California?

4. Am I physically ready for another big surgery? Mentally I would dive into it in a heartbeat if I knew the above questions wouldn't be an issue. I would do nearly anything to regain my health and eliminate the headaches and related symptoms!

5. We are not at all familiar with LA, and not comfortable trying to get around down there on our own. The logistics of flying in there, getting to the UCLA campus, navigating through that place that I would guess is huge and finding my way to the doctor is terrifying!

6. When I made the first call to the required referral nurse, I got the huge run around. She absolutely would not consider scheduling an appointment with this particular doctor although that doctor told the lady I talked to that he would like to see me. First she wanted me to see a chiari doctor. After I convinced her that I didn't need that, she then went to another doc that handles IH, then a shunt doc and finally we ended the conversation with seeing a neurologist and he would determine if I could see this particular neurosurgeon. Then we went around for a while about the requirements I needed to submit before scheduling the appointment with the neurologist and I don't have them. So I will need to do some leg work to see if I can get what they want.

7. Of course, there are the financial issues. I know that this would require a minimum of two trips down there if we were able to get them to agree to make an appointment with the NS after seeing the neurologist rather than waiting until after the first appointment to schedule the next. Then I am sure there is a waiting list to get the surgery scheduled.

8. Finally, I just don't quite know when to do this--if I should! I so don't want to miss anything more in my kids' life and the next several months have so many things coming up! Which brings me back to being overhwhelmed.

We have wondered if it would be worth my time to go to an area where the barometric pressure doesn't bounce like a ball for a week or two to see how I do. That may answer the question about the shunt not working effectively or the weather causing the problem. Kyle emailed a couple weather forcasters and they suggested anywhere in southern California through to Phoenix as an area that has little barometric pressure changes. Another trip. . .

So a lot of decisions and issues to consider. We are praying the the Lord will guide us through this and make our path clear. We love the prospect of me getting much better, yet realistically know that it may not be possible.

Storms

Big storms again! I'm not feeling so great, although it could be much worse. It just makes it harder to get through the day, particularly as the day is drawing closer to an end. The energy it takes to take care of a family is more than I have.