Progress

I am making progress. I able to extend the time b/w pills now and take 1 in the morning to start the day before moving to 2 later. I can also feel that the pain isn't as intense. I went to get groceries w/ Kyle for the first time last night and it was a little too much, but I felt that was quite an accomplishment considering that it is just 2 weeks ago today since my last surgery. It seems that the recovery is going so much better this time, and besides this being a much more minor surgery I also wonder if the difference is that I am not fighting the Intracranial Hypertension on top of it. Who knows, but I am thankful to be where I am and longing for days of normalcy.

The kids are still home from school and having them home has been such a wonderful thing for me. I was quite concerned, wondering how I would handle having the 4 home so soon after surgery, but it has been great. Even though I still have a long way to go, I feel like I have actually been able to be a mom to the kids more then I have for a long time. The Lord's timing is so good!

I have been contemplating the challenges of a chronic illness. It seems strange to call headaches an illness but now I guess I call call it IH &/or Chiari instead of headaches and seem more legitimate. I am praying that the Lord will use this in my life and that of my family to help others that struggle with chronic illnesses, particularly those that are isolated because of it. Isolation has been one of the most difficult things for me to deal with as I have journeyed through this. That being said, we are so thankful for many that have come along side us, praying for us, bringing meals, sending cards/emails and offering support to us in so many other ways. What blessings we have received.

Belated Merry Christmas

I think things are gradually improving although I have a lot of hills and valleys. I am grateful for the times that the pain meds are fully working because I feel more energy then I have for a long time and my pain is greatly reduced. Then as the pain med wears off I start slowing down and the pain can become fairly intense. I take 2 pills every three hours of the strongest pain med I think they have orally. I try to go down to 1 but it leaves me in quite a bit of pain yet. I try to stretch it out to 4 hours when I can also but don't make it so often. So I have a ways to go but I keep thinking that any day I should really make a change. People that see me when I am doing well think I look great and when people see me when the pain med is wearing off think the opposite.

We had some fun with my hair yesterday. I let all four of the kids take a turn cutting and shaving my hair then Tanner expertly finished off shaving it. I am close to bald but have a little stubble so hopefully it grows quickly. The shunt does stick out a little in the front right side of my head so it will have to be a little longer to actually hide it. I am hoping in 6 months it will be long enough to look "normal" though short. My head isn't as scary to the kids now either now that the staples are out. They are getting used to it but I am keeping it covered most of the time. Kyle and I are in a hair growing contest--he had me shave his to the same length as mine, so I guess we will see who can grow hair the fastest!

Settling in

It is so good to be home! I am glad we are reunited with our family and we are continuing to pray that the headaches are done for good!

I am doing pretty well overall. The surgical pain is still pretty strong in my head so I am taking as much pain medication as I can. The nausea is still bothering me as well so I am taking the anti-nausea meds regularly as well. The incision in my stomach isn't so bad unless I get bumped, which happens ocassionally with a 5 & 6 year old giving me hugs. :) The pain is so much more tolerable then the headaches though, and it is so nice that the pain meds actually help take a lot of the edge off. My eyes are clear and I can laugh without hurting badly--awesome! Most people can tell with my voice that I am doing much better.

My kids are quite bothered by my appearance. The staples in the front of my bald head are not impressive, so I am trying to keep it covered as much as I can when anyone is around. The staples come out on Wednesday morning, but right now I think I have enough staples in me to set off a metal detector at the airport. Hopefully my head will start looking better when the staples are out and my hair comes in a little more. I think I am going to shave the rest of my head soon so that it grows evenly. Maybe that will look better, too. :) I'm really not bothered with my appearance but I feel badly that it scares my kids.

Home

It was a long trip and a bit challenging on this aging lady, but we beat the storm. The snow is swirling round now and we are glad we are looking at it through the windows of our home instead of a hotel or hospital. I am needing to rest for the day and hopefully will start picking up again. The pain level increased from the traveling. We are thankful that the Lord brought us through many storms and we are now safely home.

Making a run for it

We had about a foot of snow here in Milwaukee last night. The roads are cleared a bit and we just decided to try to make a run for it and see how close we can get to home before the next storm comes through. We can't beat them because we are heading into them, but decided if we don't try now we probably won't be able to leave until Monday.

I am staying on my pain meds very regularly and that is keeping the pain much more tolerable then the headaches were. I am struggling a bit with nausea again but I will keep taking the drugs for that, too. Hopefully we can get home and then I can work on recovering there. We are both ready to get out of here! Please pray for safe travel--we could be seeing some tricky roads.
Hopefully next time I write will be from home! :) Then, happy healing and Merry Christmas--I am ready.

Let me introduce you. . .

to the new me! :) Despite the fact that I just had surgery on my brain twice in the last couple days, etc., I am feeling incredibly well. Quite exciting!

I am out of the hospital! Dr Heffez unexpectedly stopped in this afternoon and said that I could be released today if I wanted--and of course I did! He took the bandage off my head and he said things look good. He wasn't teasing when he said that it might be worth just shaving head. I told him that I didn't care, and I really don't. That being said, I might scare little kids. About 1/3 of my hair is gone. Basically the right side of my head is bald except a little bit on the back and back of the top. I have a u shaped incision stapled right above my hairline, another incision above my ear and then more behind my right ear. The incision on my stomach is right in the center below the ribcage. The two main incisions areabout 1 1/2" each and are stapled.

The Doctor suggested that we stay in the hotel until Saturday morning just to be sure that I continue feeling well,. If things are going well, we will leave for home Saturday morning, Lord willing. Sounds like we will be meeting a few snow storms!

We look forward to getting home and moving back into a normal life. I know that it will take a while and that even though I feel great I am still not going to pop back overnight. I really feel like I will start to improve now, though. I am very hopeful. So I will lay down a while now, then we are going to brave a store to find a few headcoverings. I certainly don't want to be scaring people! :)

Great Day

Cindy had her CT scan this morning and it came back good. The shunt was in the right position and it was working. It is amazing how fast Cindy's migraines will come and leave due to spinal fluid pressure in her head. Today was a very good day. She will be staying in the hospital until Friday if everything continues to go as planned. The Dr. advised that we would know very fast if the shunt will get plugged or if something goes wrong. Cindy will probably know within 24 hrs. and the pressure will cause the migraines to come back that fast. We were also advised that if the shunt needs to be adjusted we could contact the sales rep. from the shunt maker in our area and he should also be able to adjust the shunt if needed. So... we might not need a local NS.

Surgery Part 2

This afternoon at 4 Cindy went back into surgery to adjust the location of the shunt. This afternoon she was not feeling real good again. The Dr. came out to visit at 5:30 and said that everything went well. You just don't feel like you are playing on the same field when you talk w/ a brain surgeon. I guess I didn't listen real well when I attended brain surgery 101 and how to understand brain surgeons lingo. Anyway, Dr. Heffez felt very confident that he has the shunt working properly now. They will do another CT Scan tomorrow morning to check things out again. When they brought Cindy up to the room at 6:45 she was looking and feeling alot better. Dr. Heffez did advise that he really didn't think we need to find a local NS. He advised that once the shunt is working properly it can be 5 to 10 years w/ no problems. We are getting 3 to 5 inches of snow inches here tonight and they are talking a bigger storm coming on Thurs. night into Friday that might bring 8 to 14 inches of snow. I am sure Cindy will be in the hospital for another day or two yet.

Tuesday morning update

Good morning, this is Kathy. Kyle was called into the hospital earlier this morning to meet with the doctor. Cindy had a CT scan yesterday afternoon and it showed her brain had moved and blocked the shunt. She has to go back into surgery late afternoon and he will reposition her brain again, but as he says "just a simple procedure". He will go into the same incision to do it. He had to move her brain around a little to get the shunt in and it moved back and caused the blockage. The soreness in her head he said is caused by the surgery and also her stomach soreness is because they had to cut through muscle when the put the tube into her stomach. The doctor was very incouraged though that this will take care of her headaches. Please continue to keep them in your prayers especially this afternoon.

Surgery

This is Kyle ( I don't think I can refer to myself as the better half so.... we will go with the healthy half for now at least ). It was an early morning this morning. We got to the hospital at 6am. The hotel we are staying at is 6 miles, approximately 15 minutes to the hospital. The surgery started about 30 minutes late at around 8am. A nurse came to the waiting room to talk to me at around 10 am stating that everything went very well and that the dr would be out to speak w/ me. At 10:30 Dr Heffez came out and said that everything went very well. The shunt was put on the top of her head on the right side. We thought that is was going behind her ear. The nurse advised that they would have to shave some hair before the surgery. Cindy told them that they could shave her bald if it would get rid of her migraines (little did she know!!) Dr. Heffez said that she could get a wig or just shave the rest of her head. I told Cindy that I would shave my head also (might have to buy some more stocking caps for this winter) . They put the drainage tube to the back of her head, down the side of her neck, down her chest into her stomach. The shunt has 5 levels, 1 thru 5, 1 - letting the most fluid out and 5 - letting the least amount of fluid out. At this time she is at level 2. She was in the recovery room until noon and then brought up to her own room. She did not need to go to ICU. This afternoon they did a CT scan of her head to see how the shunt was located and sitting in her brain. She has been up out of bed twice this afternoon. She is just on liquids for the rest of the day. Dr. Heffez wants to make sure the shunt is programmed correctly before we leave. The nurse advised that on average a shunt patient will stay in the hospital for 3 days. We are trying to line up a NS Dr back in our area for checkups. We looking into 3 different offices: Sioux City, Sioux Falls and Omaha. We were advised today that the Dr's in Sioux City will not accept her as a patient. So now we are looking into Sx Falls and possilbly Omaha. Otherwise I guess we will become big Milwaukee Brewers and Milwaukee Buck fans. Cindy did tell me tonight that the ringing is no longer in her ears and that she does have head pain - but a different type of head pain (hopefully from the surgery). I do believe that many, many prayers have been answered.

We made it!

We are in Milewaukee and doing ok. The trip went well. The shots didn't make me sleep--I don't think my brain will shut off anymore without sleep meds--but made it tolerable. The last couple hours weren't quite as good but tolerable.

We had time to talk today about how many blessings we have experienced through this difficult journey. How do we say thank you to so many? So many have blessed us and we know the Lord has worked through many to minister to us. Very humbling.

After looking back at a few updates from the past, I have figured out that I have spent about 30 nights in the hospital in 2 years. Hopefully this stay won't add to many more days!

We hope to have a quiet day tomorrow. We are both very ready for the surgery to be take place.

A little better

Today isn't quite as bad. I also got a time released sleeping pill that let me sleep till 5:30 this morning which helped. The headache is pretty strong yet, though.

The surgery will now be at 7:30 am Monday. They told us that it would probably take 1 1/2 hours--a little longer then we thought. I will have an incision in my head above my ear (the tube runs through a ventricle of my brain) and a 2nd in my stomach where they tubing runs under my skin and they insert it into my stomach surgically where it will drain. The technical name is ventricu-peritoneal shunt surgery, vp shunt for short.

Thank you for your kind words and support during this difficult journey in our lives. Psalm 121 is one of my favorite and a comfort at this time. Someone read it to me this morning and it is reassuring to know that God is in control and has a plan through all this.

Rough day

Today has been much worse. The headache is very strong, nausea pretty bad and sleeping little even w/ meds. I'm praying it improves before travel. All tests have come back normal so unless I get sick the surgery will be monday morning around 9:30.

Someone will keep blog updated next week during & after surgery. The Lord is good and will see us through.

I must admit that I am afraid. Not of the surgery, recovery or pain. I am afraid that the headaches aren't going to be done after the surgery. Everything seems to point to this and we are moving forward because we don't know what else to do. I'm not sure how much endurance I will have after this if the headaches continue.

Things are coming together. We have made plans for the kids and appreciate the help people are giving as we prepare to leave. We plan to leave Saturday morning. I will get a few shots at the hospital to help control the pain while we travel. So far I have been cleared for surgery. I have gotten a few tests back from before and they are normal. Should hear about the heart test and others soon.

Our concern now is that I not develop the flu or a cold which would prevent the surgery. We are also hoping that my doctor here will be able to find a neurosurgeon in this area that will be willing to reprogram my shunt if needed. We really need to have ns around here that will do that but we are concerned. Many specialists are not willing to take me on now because of my medical history and because I am considered a complex, dificult case.

We continue to covet your prayers.

Another Sunday passing

Sometimes it seems as if time is not moving but it is always hard for me to believe that another Sunday is here and nearly gone.

I have my pre-operative appointment and heart test scheduled for tomorrow morning. Hopefully I will be healthy enough for another surgery, and I really hope this is the last one!

The headaches are gradually getting stronger. I went to the kids' orchestra concert yesterday and by last night it was pretty strong. Today I decided I better keep it quiet and low key and I am doing a little better.

Someone asked me about the issues that come with the shunt that I mentioned before. It sounds like I might have some problems with balance and dizziness, especially when getting up or down. I will need to learn not to pop out of my chair, but I can't do that now, either, so that isn't much of a change. There is a risk of infection but my surgeon said that he hasn't ever had an infection with a shunt he has placed. I will probably need some follow ups and it sounds like the tubing can become plugged. It also sounds like some or all of it will need to be replaced every so often--maybe every 5-10 years or so. Nothing major compared to what I am dealing with now.

I just read on one of the blogs I have listed in my profile that a family adopting a little girl from Guatemala was preparing for the pickup trip this month and were just notified that she died. Oh, my heart just breaks for them. It makes my problems seem pretty small. Please remember this family in your prayers.

doctor bio

I really have nothing new today, but I thought that I would paste in a bio that I found of my neurosurgeon for those that are interested. A few have expressed concern about doing a second surgery with my brain and have wondered about my doctor. He is a very impressive surgeon, but kind and compassionate as well. We are so thankful that he is my doctor! I just found this bio on the internet from 2006.

Dan S. Heffez, MD is a neurosurgeon in practice at the Milwaukee Neurological Institute in Milwaukee, Wisconsin. Prior to relocating to Milwaukee, he was Associate Professor of Neurosurgery, Rush Presbyterian St. Luke’s Medical College, Associate Neurosurgeon Rush Presbyterian St. Luke’s Medical Center and director of the Chicago Institute of Neurosurgery and Neuroresearch Neurovascular Surgery Center. He came to the Institute in 1990 from the Johns Hopkins School of Medicine, Baltimore, Maryland, where he served as an assistant professor of neurosurgery and honed his expertise in the treatment of cerebrovascular disorders. Prior to his work at Johns Hopkins, Dr. Heffez held a Fogarty Research Fellowship at the National Institute of Neurological and Communicative Disorders and Stroke.
The recipient of many honors and awards including the prestigious Johns Hopkins School of Medicine Clinician Scientist Award, Dr. Heffez is highly regarded for his surgical skill as well as his research efforts to advance the understanding and treatment of Chiari malformation, cervical myelopathy and cerebral vasospasm. Experimental work initiated and performed by Dr. Heffez was the impetus for developing human fetal surgery for the correction of certain forms of spina bifida. Since 1994 he has been exploring the link between cervical myelopathy and the fibromyalgia syndrome.
Dr. Heffez holds memberships in numerous professional organizations including the American Association of neurological Surgeons, Cerebrovascular and Pediatric sections; Congress of Neurological Surgeons; and Royal College of Physicians and Surgeons of Canada.

Eventful day yesterday

We are thankful for answered prayer regarding Tara's ears. They have completely cleared, which was surprising to the doctor. So she is in the clear for another 6 months. :)

I left a message for Dr Heffez and he called me back about an hour later. He reviewed everything and said that he feels that the shunt is going to be the answer. He didn't really even question the pressure number of the last tap. I have read that the numbers can vary wildly depending on the time of day and a variety of factors, but it didn't alarm him. I have a surgery scheduled to place the shunt for the morning of December 15. It is a VP shunt with a programmable valve. Once it is placed, the valve can be programmed with a computer or something held next to my head to adjust the pressure levels as needed. He anticipates that I will be in the hospital for 3 days and asked that we plan to be in Milwaukee for a total of a week so that I can see if the pressure level that he sets it at is comfortable.

This is really an answer to prayer. Our biggest concern now is that this be the end of this journey for us. I can deal with the inconveniences and issues that a shunt will bring but we are really praying that this will resolve the headaches and that life can start becoming more normal again. We have thought that we had the answer a few times already so this time we are a little hesitant to become to excited until we actually see the results.
The headache was totally gone on Wednesday and started coming back a little Thursday. I am feeling it more today and I would guess that it will just keep getting stronger. I am noticing that Wednesday I could do more but Thursday and even today physical exertion of any type again seems to make the symptoms worse pretty quickly. It is hard to figure out ways to get stronger when I can do so little. Kyle buzzed me around Walmart in a wheelchair this morning, though, and I enjoyed that!

I am still having the tests done that I mentioned yesterday just in case something shows up but since every other test has come back normal we anticipate that will be the same with these. Please continue to pray for strength for me because I am so weak. Also please pray for Kyle and the kids as we once again go through some challenging times. Thank you so much!

fyi

Tara looked good yesterday and I have hope that her tubes won't have to come out. We find that out today.

The doctor decided to order a few more tests on me just to make sure we aren't missing anything. He said they are grasping at straws but thought we would do a few things that either haven't been done or not done in a couple years. They will do quite a few tests with blood and are also scheduling an ultrasound of my heart. My blood pressure has always been unusually low so they want to make sure there isn't something going on there that has been missed. (my top # is usually in the upper 80's to lower/mid 90's--but I don't remember the bottom. Evidently a couple times when I was in bad shape the top dropped to about 70) My impression is that a shunt isn't out of the question since I have had relief from the headaches again after the spinal tap, but the ns would have to determine that.

I will leave a message for the neurosurgeon today but I am assuming that I won't hear back right away. We'll see what he has to say.

It was good to have a relatively pain free day yesterday. I am desperately anxious for answers and normalicy in our lives. Please pray for us!

Strange but true

Well, it makes no sense but I am headache free today. If this is a mental thing I should be hurting today b/c logically speaking it shouldn't have helped to have the spinal tap. I really don't know what is going on but will call the neurosurgeon tomorrow. I'm doing a few small things out of the house today just to get a breath of fresh air and enjoy being pain free as long as it lasts. I am incredibly weak but it sure feels good not to hurt! My two big things to do are to bring Tara to the general doctor today b/c she has had a bad cough for about a month which is interrupting her sleep. Then tomorrow we see the ENT about her ear tubes. If they need to come out I hope they can do it within a few days in hopes that I will feel well enough to take care of her adequately.

We are discouraged and confused about what is happening but hoping that this means something. Clear cut answers would be so much easier! Thank you for your prayers, messages and emails of support--we appreciate you!

disappointment

Not sure what to write, but I know a few are wondering what happened today. The spinal tap ended up being a little more then uncomfortable--they kept hitting nerves & finally stopped for a while then tried again more successfully.

The results were not what we expected. The reading was 16 and normal is under 20. Not sure what this means at this point, but we had so hoped that this is the answer. Maybe it still will be but I need to do more research. I am supposed to call the neuro on Thursday with the results & how I am feeling. They did pull out two vials of fluid to see what happens and I am feeling a little better now. We'll see what happens the next few days.

We are disappointed and discouraged. I haven't been answering email/phone today--just need some time. Please pray for us.

Quick note

The spinal tap is on for tomorrow and is scheduled for 10:15. Please pray that things go well, that I can keep my mind in other places :) and that we will have some answers to many questions.

Thanks!