Strong headaches

The headaches remain very strong. I can't stand any noise--even clicking of the keyboard irritates. Ringing in ears is loud and nausea is getting much worse. Our little two kids are at my sisters house and I stay in bed with the door closed most of the day. I get up a few minutes every few hours and search for answers. I found intracranial hypertension support group a few weeks ago and so I posted there with what is happening. A lady responded that she has had the same thing happen with the vp shunt I have and that she required surgical revision. She had to do surgical revisions every 4 months or so for 2 years until a different shunt was placed in the base of her skull at the back of her head. Not sure if that is an option for me b/c of the chiari problem. I am so exhausted from the pain but sleep is becoming more difficult again even with meds. It is hard to imagine that I felt so good for a few weeks--seems like a dream.

spinal tap

I have had a few ask if I have had relief so I thought I would just make a note here. Unfortunately I think we all thought the pressure would be low so I didn't have any fluid drained off this time. I didn't think to ask when they measured the pressure, but then that would have taken a doctors order. So no relief--I think they continue to intensify every day. It is actually worse today and last night I think b/c of the travel to the dr & commotion.

Interesting day

Well, it was an interesting day. The abdominal issue is a question mark but no masses, tumors or evidence of anything to worry about. The blood tests are normal--I had hoped again one would be off so I could just start taking a pill and get better.

I called Dr Heffez in desperation b/c the headaches are so difficult to deal with again. He called me today and asked me to get a spinal tap again to see if the pressure is normal to confirm the shunt is working properly. I was able to get that done this afternoon and found the pressure is a little higher then it was before the shunt surgery. Evidently the doctor left for vacation after talking to me because his office called to let me know he is out and that he would call me on Tuesday. Thankfully he isn't gone for weeks, but right now Tuesday feels like a very long time and then I am not sure what will happen. But evidently I am not having low pressure headaches but high pressure since the pressure is higher then it was before and I was having headaches then, too. So I don't know if this means that the shunt is blocked (or partially) in my brain, not working, or if I am just making too much spinal fluid for the shunt to keep up with. The shunt is open as far as he will allow--only 1/2 a setting from the most open--so another adjustment isn't an option. The only options I know of at the moment would be going back on that medication I had been on in November--which did not go well at all--or another surgery. But then I am not a brain surgeon and have guessed wrong many times.

No news again

I found out that my local doctor was out for the day, so we wait another day for results. The headaches are staying about the same. The two things that frustrate me the most is that it is difficult to think/plan/etc and it is difficult to be around my family because of the noise and commotion that naturally comes with a family of 6. More than one person talking or even making a noise overwhelms me and my head feels like it will expode. A loud noise (to me) throws me over the edge immediately.

Not much new

I had the ct scan done with a few more blood tests. It went well and I hope to get results in the next day or two. This seems very small and much more tolerable then my head. I can think through abdominal pain! The headaches are staying steady. I guess the best description is that I feel lopsided and my brain hurts when I move my head, but otherwise just aches.

We've done a little more checking about shunt adjustments being done closer. We have found that I will need a neurosurgeon to do that--neurologists don't work with them from what we are finding. Also, the closest ns's that work with my particular kind of shunt (which I needed due to the chiari issue) is in Omaha. So we are contemplating if or how to find out if an Omaha ns would see me but really don't want to lose the connection with Milwaukee. We'll see how that turns out. Traveling 2 1/2 hours one way is much more tolerable then 8!

Thank you for your prayers and words of encouragement.

Not so good

Things are not going so well. I suspect that I am having low pressure headaches now, which are similar yet different. The nausea is back--not so strong but just there. We are supposed to wait 10 days to call with how I am doing but might call earlier since it isn't going well. Bad thing is, the next step may be to go back to the last setting I had which was also giving me headaches. Not sure if there are any more answers.

I have the ct scan of my abdomen tomorrow and perhaps we will have some simple answers for that.

Please pray that the Lord will give us strength and much grace.

These four great kids are the reason that I need to get better!

Home

For the few kind souls that are still reading this blog I will give a short update We made it home last night but have discovered that two days of travel and a dr appointment are really too much for me to handle.

The shunt was adjusted to allow a little more drainage of fluid. He told us this is the most he will open it because my ventricles are too small and he thinks they will collapse if any more is released. We need to try this for 10 days and see how things are going. Do I feel better? Well, I feel different.

The drainage of the shunt is not causing the lower abdominal pain. What that really means is that I just need a new body!

Challenges

I had my ct scan today, and have a copy of it in my purse to take with me tomorrow to Dr Heffez. I also had to have an ultrasound today because I have been having pain in my lower abdominal area. It started not long after surgery and varies between a dull ache and a sharp throbbing pain. All the normal stuff has been ruled out like appendix, kidney stones, bladder infection, gallbladder problems, etc. The ultrasound showed an unusual fluid build up which they can't explain, so I need to have an additional test next week. I had really been putting off doing anything with it because I really thought it would just go away. They don't think it is related to my last surgery but I will ask the neurosurgeon since the shunt drains in the upper cavity. It is discouraging.

My headaches continue to escalate. The ringing in my ears sounds like someone blowing a dog whistle inside my head and noise is becoming more difficult to tolerate. But maybe I am just not dealing with it as well.

Living without headaches for a while makes it so difficult for all of us to be dealing with it again. Please pray that the Lord removes this burden from us and/or gives us much strength and courage--we really need it!

Milwaukee, here we come

We have decided to travel back to Milwaukee for my follow up visit. I have my ct scan scheduled for Wednesday and we see Dr Heffez in Milwaukee on Friday morning. We will be able to take the ct scan directly to him to review while we see him. I started to have symptoms again nearly 2 weeks ago and because they are increasing we decided it was best to get back there. We are praying an easy adjustment to the shunt setting will take care of it.

Several have asked how things are progressing for me. Denial worked quite well until the end of last week. It isn't easy to admit, after having 2 (or three if you count the revision) "brain surgeries" that it could come back--to others or myself.

Compared to before surgery, things are mild. I have had the opportunity to go to the office the last few weeks and watched my kids (and husband!) bowl and rollerskate with friends. The best is that I have been able to go to church regularly, which is such a blessing! These events tire me out quite thoroughly, but they are so enjoyed!

I plan to keep pretty quiet the next few days in anticipation to a long drive Thursday and Friday. We hope to get home again Friday night. Please pray that an adjustment to the shunt will take care of everything--it is unnerving to feel everything coming back!

Another week

Time just continues to move on by. I think that I am improving although now it seems like it has slowed a bit. I have to remind myself that it has only been a few days over 4 weeks since surgery and I am getting to the office in the mornings. I would love to start running around and doing all things things that I used to do, but I have learned that patience is a virtue that I am still learning. Will I ever be as strong as I was? How much will I be able to do when I am considered "recovered." I guess those things remain to be seen.

We are thankful for the many good days that I have had now, though. I may not be able to do active things with my family yet, but we can talk, laugh, read books, etc. That is progress! :)

I need to have the ct scan in 1 1/2 weeks. Kyle would really like to have that done here instead of traveling back to Milwaukee for an appointment with the Doctor. So most likely I will have the scan done here and mail it there and see what he has to say about the healing and current placement of the shunt tubing.

Improving!

I continue to improve as the days are passing. It has been 3 weeks, 1 day since my surgery and I am amazed at how I am recovering from this surgery compared to my Chiari surgery. It seemed that I just never really recovered from that surgery and reached a point midsummer where I was getting worse instead of better. I am so thankful!

This week I started going to the office a short time each day. It is fun to start getting back into things and a little overwhelming!

My kids and husband are probably the most happy about my recovery! I can talk and laugh and act like a mom even though I don't do much yet. For this I am the most thankful, and pray that I will continue to rebuild my strength so that I can start taking up some of my daily routines. At this point I am not doing very much yet but I am working on improving that. It seemed like (before the headaches were really bad this last time) that my body was willing but my mind wasn't. Now my mind is ready to really start running and being normal and my body is holding me back. Thankfully that will just keep getting better!

Happy New Years

What a wonderful day! I am continuing to improve. We had a company today which was so wonderful!

I continue to be weak but am making improvements. It has only been 2 weeks and 2 days since my last surgery and I am doing better then I would have imagined before I had it. I have a lot to be thankful for!

My 40th birthday is this July and I have been thinking that my birthday will be a good thing. My 30's have been difficult with 6 surgeries and many physical challenges. I am looking forward to a new decade in my life and we pray that it will be a healthier decade for me. :) So no sad faces here to grow a little older. I think that I am gradually feeling younger and may feel younger on my 40th birthday then I have for many of the years of my 30's. I generally don't make New Year's resolutions but this year my goal is that my strength will be mostly or all regained by my 40th birthday. Here we go!