Today we found out that on Sept. 21, 2013 there is a Walk Across America for Chiari! We thought we would share the excellent website that has a host of information on the illness!!
Enjoy!
http://www.conquerchiari.org/index.html
Wednesday, September 18, 2013
Tuesday, September 25, 2012
September 2012
This is David by the way!!
Anyway, today is four days before the big Race my first Ultra marathon. It is in the Mountains north west of Pagosa Springs Colorado. It is called the Devil Mountain Ultra Marathon. It is a 50 K (31 Mile) trail run with 4800 + feet elevation incline throughout the race climbing up to 10,000 feet elivation… Crazy. I have really enjoyed running, it helps me so much. I am so excited about this race. I am like a 12 year old boy the day before hunting season starts or on Christmas eve. The night before the races and even days before I have trouble sleeping and I am so anxious I can hardly contain myself. Running just makes me happy. The family and I have ran allot this year and it is so fun to watch the family grow closer together and get excited about their progress and failures and aches and pains. It is awesome.
Before the surgery my physical passion was lifting weights. I always prided myself on being strong however, the surgery put an end to my weight lifting days. It is frustrating at times because I am occasionally asked to help people move and I just have to tell them I can not lift anything that causes me to hold my breath. My two sons now get a lot of lifting opportunities. They are so good about it they police me pretty good warn me if I try to do to much.
I still have to watch myself so as I do not over do it on new activities. It is a strange thing. I can run for hours and am OK however, if I do something that I have not worked up to it wipes me out. Me getting wiped out by some physical activity is becoming fewer and fewer. I feel so blessed to have recovered like I have. I still feel delicate at time but I am not complaining. I'm so grateful to my Heavenly Father for all my blessing. I hope all of you are doing well and wish you the best in your recovery's.
Anyway, today is four days before the big Race my first Ultra marathon. It is in the Mountains north west of Pagosa Springs Colorado. It is called the Devil Mountain Ultra Marathon. It is a 50 K (31 Mile) trail run with 4800 + feet elevation incline throughout the race climbing up to 10,000 feet elivation… Crazy. I have really enjoyed running, it helps me so much. I am so excited about this race. I am like a 12 year old boy the day before hunting season starts or on Christmas eve. The night before the races and even days before I have trouble sleeping and I am so anxious I can hardly contain myself. Running just makes me happy. The family and I have ran allot this year and it is so fun to watch the family grow closer together and get excited about their progress and failures and aches and pains. It is awesome.
Before the surgery my physical passion was lifting weights. I always prided myself on being strong however, the surgery put an end to my weight lifting days. It is frustrating at times because I am occasionally asked to help people move and I just have to tell them I can not lift anything that causes me to hold my breath. My two sons now get a lot of lifting opportunities. They are so good about it they police me pretty good warn me if I try to do to much.
Wednesday, April 4, 2012
three years later...
What a recovery! David now thinks he is invincible and has taken up the sport of running. Running is something David never thought he would be able to do since his top vertebrae was trimmed to allow the cerebellum extra space, but after watching his family team run the Wasatch Back Ragnar relay in 2011, he decided it looked fun enough he had to try.
David began running in July of 2011 and after a few months learned it was something he enjoyed! He ran the Rockwell mud run as his very first race and then quickly signed the family up for the Las Vegas Ragnar relay. We had a great mix of family with our kids and his brothers and sisters. Who knew running could be so fun!
David's goal of running a half marathon was realized in March of 2012 when he ran the Canyonlands half marathon with his sister and her husband. His next big race is in April when he tackles the Salt Lake City Marathon.
When you ask David why he likes to run so much, his answer is simply, "Because I can." He is grateful every day that the doctors took such good care of him and that he is still able to do hard things...even things he never dreamed he could do!
Saturday, March 20, 2010
The Surgeon
David's surgery was done locally in Provo, Utah. We were extremely blessed to get the surgeon we had. If you would like more information, please send an e-mail to mkropushek@gmail.com
and we will happily answer any individual questions you may have!
and we will happily answer any individual questions you may have!
Sunday, January 10, 2010
Six Months later
We have heard from several readers wondering how David is doing now so we thought we should give you an update. We also welcome questions and comments and are more than happy to answer any other questions any of you may have.
David is doing extremely well! He still tires more quickly than normal, but most people wouldn't really notice. The cold makes his neck ache, but we live in Utah so it is unavoidable and we make sure to keep a heated neck wrap handy. One thing we also found to be valuable a couple months after surgery is one of those heated Shiatsu neck massagers.
Six months after surgery, David is skiing (with a helmet, of course), and enjoying winter. He does a little too much sometimes and I grounded him from the Black Diamond runs this year because three hours after we get home he can't function and sleeps the entire next day. But I never expected him to be doing as much as he is so soon after surgery.
His first few weeks back to work were pretty difficult. Holding his head up for an entire day was much harder than he thought it would be after sitting in a recliner for so many weeks. I really think that the surgeon you choose makes a big difference in your recovery. Make sure you know EXACTLY what he plans to do during the surgery because we have heard some horror stories.
David's surgeon did a craniectomy, increasing the size of the foramen magnum (opening at the base of the skull) by 1 cm. He also did a C1 laminectomy which trims the back portion of the C1 vertebrae to allow more space. He also did a dural patch. Our surgeon took the patch piece from the lining on the side of David's skull. This area is still sensitive as it is healing, but the surgeon believes that by using David's own parts, it has a greater chance of accepting the patch.
When we asked if David had any restrictions, they told us that he is actually much safer doing physical activity than he was before. His only restrictions are not too lift enough weight to make him hold his breath, (the first four months it was nothing more than a gallon of milk). They suggested wearing a helmet for safety since his C1 vertebra has been trimmed and, of course, no football or soccer, but he is too old for that anyway :)
David is doing extremely well! He still tires more quickly than normal, but most people wouldn't really notice. The cold makes his neck ache, but we live in Utah so it is unavoidable and we make sure to keep a heated neck wrap handy. One thing we also found to be valuable a couple months after surgery is one of those heated Shiatsu neck massagers.
Six months after surgery, David is skiing (with a helmet, of course), and enjoying winter. He does a little too much sometimes and I grounded him from the Black Diamond runs this year because three hours after we get home he can't function and sleeps the entire next day. But I never expected him to be doing as much as he is so soon after surgery.
His first few weeks back to work were pretty difficult. Holding his head up for an entire day was much harder than he thought it would be after sitting in a recliner for so many weeks. I really think that the surgeon you choose makes a big difference in your recovery. Make sure you know EXACTLY what he plans to do during the surgery because we have heard some horror stories.
David's surgeon did a craniectomy, increasing the size of the foramen magnum (opening at the base of the skull) by 1 cm. He also did a C1 laminectomy which trims the back portion of the C1 vertebrae to allow more space. He also did a dural patch. Our surgeon took the patch piece from the lining on the side of David's skull. This area is still sensitive as it is healing, but the surgeon believes that by using David's own parts, it has a greater chance of accepting the patch.
When we asked if David had any restrictions, they told us that he is actually much safer doing physical activity than he was before. His only restrictions are not too lift enough weight to make him hold his breath, (the first four months it was nothing more than a gallon of milk). They suggested wearing a helmet for safety since his C1 vertebra has been trimmed and, of course, no football or soccer, but he is too old for that anyway :)
Thursday, August 13, 2009
Recovery Time
This is David
Today is Thursday the 13th of August. I am doing well I am recovering in beautiful mountain get away! It has been good to see the Lake and Mountains and be away from the city. It is amazing how fast I get tired when I do anything. I took a walk with my Father in law (age 70 years) yesterday and he had to wait for me to catch up 3 times we were only going about 200 feet. The pain is going away. My head is still numb in spots and is very tender in others. I feel so blessed to have such good friends and people around me, you have truly been a blessing to me and my family. Well I better go.
C-ya, David
Today is Thursday the 13th of August. I am doing well I am recovering in beautiful mountain get away! It has been good to see the Lake and Mountains and be away from the city. It is amazing how fast I get tired when I do anything. I took a walk with my Father in law (age 70 years) yesterday and he had to wait for me to catch up 3 times we were only going about 200 feet. The pain is going away. My head is still numb in spots and is very tender in others. I feel so blessed to have such good friends and people around me, you have truly been a blessing to me and my family. Well I better go.
C-ya, David
Tuesday, August 11, 2009
Tuesday, August 4, 2009
Really?
Did I really think I was going to sleep well last night? First night home really makes you appreciate what the nurses do at the hospital. I was there every night, but failed to appreciate how busy they were.
I also thought I was going to get to sleep in my bed, but David decided he should try to lie on his side in the night, which meant I got to spend another night in a recliner. Well, back and forth between the recliner and the bed as he got uncomfortable.
Every day I am surprised by how much improvement I see. He is going longer and longer between pain medication now and is alternating between the powerful pain-killers and extra strength Tylenol. The kids enjoy holding his hand and walking with him around the house and he even ventured outside for a few minutes today.
Getting a shower was an adventure. We put a chair in the shower with a towel on it so it wouldn't be quite so cold. It's a little frightening washing his hair and watching the suds drip down along the incision, but the nurses told us a little water was ok as long as we didn't let it soak and we dried it out well with peroxide afterward.
He is now worn out and I am going to try again to get a good night sleep!
I also thought I was going to get to sleep in my bed, but David decided he should try to lie on his side in the night, which meant I got to spend another night in a recliner. Well, back and forth between the recliner and the bed as he got uncomfortable.
Every day I am surprised by how much improvement I see. He is going longer and longer between pain medication now and is alternating between the powerful pain-killers and extra strength Tylenol. The kids enjoy holding his hand and walking with him around the house and he even ventured outside for a few minutes today.
Getting a shower was an adventure. We put a chair in the shower with a towel on it so it wouldn't be quite so cold. It's a little frightening washing his hair and watching the suds drip down along the incision, but the nurses told us a little water was ok as long as we didn't let it soak and we dried it out well with peroxide afterward.
He is now worn out and I am going to try again to get a good night sleep!
Monday, August 3, 2009
Home Again
We were able to bring David home this afternoon around 6:30 p.m. The car ride was pretty rough on him and he changed colors several times. We made it home without incident, and were so grateful for good neighbors who took the call from me on the way home asking them to move the recliner into the bedroom so he had a place to sleep.
One thing we really wondered about going into this surgery was how he was going to sleep...did they have him sleep on his side? Would he wear a brace? We really had no idea. The truth of the matter is, he lays on his back right on his incision on a pillow. I was pretty surprised, but parts of his head have no feeling right now due to the large number of nerves that were cut during the surgery. I guess that is a good thing since the nurse pulled out the two staples on the side of his head before we left and he didn't feel a thing!
Now I am just really tired and glad to sleep in my own bed tonight. I get the whole thing to myself :) I only hope that David is able to wake me up if he needs anything tonight because I am sure I will sleep like a rock!
One thing we really wondered about going into this surgery was how he was going to sleep...did they have him sleep on his side? Would he wear a brace? We really had no idea. The truth of the matter is, he lays on his back right on his incision on a pillow. I was pretty surprised, but parts of his head have no feeling right now due to the large number of nerves that were cut during the surgery. I guess that is a good thing since the nurse pulled out the two staples on the side of his head before we left and he didn't feel a thing!
Now I am just really tired and glad to sleep in my own bed tonight. I get the whole thing to myself :) I only hope that David is able to wake me up if he needs anything tonight because I am sure I will sleep like a rock!
Sunday, August 2, 2009
Better Every Day
As you can see from the smile, David is feeling much better. The glazed look over his eyes is gone for the most part. It still shows up once in a while when the medication kicks in, but we are getting him back and he enjoys playing games with the nurse and pretending he's asleep to surprise the kids.
Saturday, August 1, 2009
Changes
It is amazing how things change. One moment he seems like he is feeling better and the next he is in a lot of pain. Some medications work for him and some don't. They gave him one dose of a medication in the NSAIDS (ibuprofin) family which worked better than anything, but the doctor would only allow him to have one shot of it since it has a tendency to slow the healing process.
Hopefully he can get some sleep tonight.
Our friends from the ICU waiting room lost their dad this morning. He was 54. It was pretty sad for me after sharing their ups and downs with them. They had a lot of family in the waiting room and a lot of support. It reminded me of my family. I hope they can find comfort in family through this tough time.
Hopefully he can get some sleep tonight.
Our friends from the ICU waiting room lost their dad this morning. He was 54. It was pretty sad for me after sharing their ups and downs with them. They had a lot of family in the waiting room and a lot of support. It reminded me of my family. I hope they can find comfort in family through this tough time.
New Room
David is settled into the new room and is actually moving around fairly well with limited support. One side of his head is numb to the touch but from what we understand that is common for a few weeks after this surgery because they cut a number of nerves.
He has a slight fever now 100.3. It doesn't seem to concern any body so I guess they will just watch to see how it goes. The kids are glad he is in a new room so they can all come in and see him at once.
He has a slight fever now 100.3. It doesn't seem to concern any body so I guess they will just watch to see how it goes. The kids are glad he is in a new room so they can all come in and see him at once.
Research shows
Research shows that the uvula prevents food from going into your nasal cavity when swallowing. David says he could do without his. He swears it is 4" long and is really bothering him.
At least it was up until an hour ago. It has been entertaining listening to him complain about it.
The doctor did his rounds and now David got to get rid of his arterial line and his catheter. (YIPPEE). He also told us it is time to move upstairs and out of ICU into a regular room.
That is good news although we hear those rooms are rather small and our room in ICU has been nice and large. They even brought me a fairly comfortable recliner to sleep in last night.
This photo shows the bandage on the back of his head. The red spots are simply dried blood and it doesn't look the greatest, but it gives an idea of how large the incision is. The bandage ends about 1" below the soft collar. I haven't seen the actual incision yet, but the doctor says it is closed up with staples on the outside
and sutures on the inside. He will have the staples in his head for approximately 12 days. He has a few staples on the side of his head where the 'vice' created larger holes.
He ended up getting a funny shave after all and now Mike is in Iraq and Darla is back in Ohio. What will we do?
With an 8-10 week recovery, I guess we have plenty of time to figure it out.
At least it was up until an hour ago. It has been entertaining listening to him complain about it.
The doctor did his rounds and now David got to get rid of his arterial line and his catheter. (YIPPEE). He also told us it is time to move upstairs and out of ICU into a regular room.
That is good news although we hear those rooms are rather small and our room in ICU has been nice and large. They even brought me a fairly comfortable recliner to sleep in last night.
This photo shows the bandage on the back of his head. The red spots are simply dried blood and it doesn't look the greatest, but it gives an idea of how large the incision is. The bandage ends about 1" below the soft collar. I haven't seen the actual incision yet, but the doctor says it is closed up with staples on the outside
and sutures on the inside. He will have the staples in his head for approximately 12 days. He has a few staples on the side of his head where the 'vice' created larger holes.He ended up getting a funny shave after all and now Mike is in Iraq and Darla is back in Ohio. What will we do?
With an 8-10 week recovery, I guess we have plenty of time to figure it out.
What does a Uvula do?
David's nose and throat have been pretty dried out from the oxygen. He keeps complaining about his uvula and asking what it does.More ice keeps it cool and moist but he sure wishes he didn't have one right about now.
He got up and walked about 30 feet this morning then he brushed his teeth and got a sponge bath. He really did smile for the picture but I missed it.
Now we are waiting for the doctor to come in and see what happens next.
Cream of Wheat is for breakfast. Yum, Yum!
One Funny Thing
One funny thing happened yesterday. When we were first allowed to see him in ICU, they had called for a soft collar to put on him. The collar they brought up was an extra small :) It was pretty funny!
It was extremely tiny and the nurses had to make several more calls before someone would bring them a large. David is also to tall for the bed and fills it top to bottom. We have to continually lay him down and slide him up to the top so his feet don't hit the bottom of the bed.
It was extremely tiny and the nurses had to make several more calls before someone would bring them a large. David is also to tall for the bed and fills it top to bottom. We have to continually lay him down and slide him up to the top so his feet don't hit the bottom of the bed.
Good Morning
David had a pretty fitful night. He did make it for 4 hours without medication so that was good! This morning he will take his first walk. It will be very nice to see him up and walking. Later today he should move out of ICU.
The kids visited him last night. Although he tried to joke around with them, he was pretty sleepy. It was difficult for them to see him so helpless. They left in good spirits and will be back this afternoon for another visit.
One pretty cool thing about ICU is the amazing people you meet in the waiting room. One family said 'goodbye' to their Dad twice in one day, both times he made a turn for the better and continues to fight. It was a pleasant surprise to see them still in the waiting room this morning.
We feel truly blessed that the outcome has been as good as it has. There are so many turns it could have taken but your prayers and faith have sustained us and we continue to be blessed! Thank you for being so incredible!
Stay tuned...
The kids visited him last night. Although he tried to joke around with them, he was pretty sleepy. It was difficult for them to see him so helpless. They left in good spirits and will be back this afternoon for another visit.
One pretty cool thing about ICU is the amazing people you meet in the waiting room. One family said 'goodbye' to their Dad twice in one day, both times he made a turn for the better and continues to fight. It was a pleasant surprise to see them still in the waiting room this morning.
We feel truly blessed that the outcome has been as good as it has. There are so many turns it could have taken but your prayers and faith have sustained us and we continue to be blessed! Thank you for being so incredible!
Stay tuned...
Friday, July 31, 2009
Photos Finally!!
These pictures were taken shortly after he came out of surgery. He is much more alert now, although he still hurts, and is moving his arms and legs. He ate some ice cream and graham crackers and remembers why you should never eat crackers in bed! (crumbs in the bed are really crummy!)
The doctor told him to move around as much as possible. When he moves around, the medication works better.
"My Neck Hurts"
David's three favorite words for the past few hours have been "My neck hurts." Understandably so! He is now resting (with the help of morphine) in ICU and is now becoming more coherent. It seems he wakes up when the morphine wears off. It is surprising not more hurts. He has small holes in the sides of his head from the 'vice' they had his head in for surgery.
Lunch for David has been ice chips with a topping of ice chips. It seems he has a new favorite food as well!
We are still looking at spending the night in ICU before moving into a room for another few days. I was hoping to post a picture, I will add it soon.
Lunch for David has been ice chips with a topping of ice chips. It seems he has a new favorite food as well!
We are still looking at spending the night in ICU before moving into a room for another few days. I was hoping to post a picture, I will add it soon.
Recovery
The Doctor just spoke to us and let us know that everything went well. They successfully enlarged the opening at the base of the skull to relieve pressure and, hopefully improve flow of the cerebral spinal fluid. He isn't sure that the ringing in his ears will ever go away completely, but if the problem is fixed, it shouldn't get any worse.
It appears that medication has made him a little nauseated, but he is moving his legs and arms which is good news. It will be another hour or so before they take him to ICU where we can see him.
It appears that medication has made him a little nauseated, but he is moving his legs and arms which is good news. It will be another hour or so before they take him to ICU where we can see him.
Almost Finished
Latest word is that they are getting to the final stages of surgery. As far as we know everything went well. We are now waiting for the Dr. to come out and give us the final word. David will be in ICU overnight and it will probably be another hour and a half before we can see him.
No News is Good News
The Nurse says all is still going well. She cannot anticipate how much longer the surgery will be. In her words, "With these surgeries, we know when it will be done when it is done."
First update
The nurse just came out and updated me. As of now, they are still doing prep work such as a new haircut and all of that good stuff. She will come out every hour and give me status updates. Apparently the only news they give her is when there are problems so the less information she gives me the better things are going.
Now We Wait!
We checked David into the hospital this morning at 5:15 am. It was a very short night and the kids were struggling. It was hard for them to say good night knowing the next time they see him he will be in the hospital and likely hurting.
After changing into the 'comfortable' hospital gown he decided he needed to use the restroom so he had a funny little sideways walk down the hall holding his gown. The nurse assured him that was the last time he would need to do that for a while because they will be putting in a catheter once he goes to sleep. I am sure you can imagine how happy that made him!!
They wheeled him into the room for anesthesia at 6:30 am and surgery started at 7. I am in the waiting room doing what people do in there.....waiting! Waiting for the promised update which should come around 8:30. As soon as I get it I will update the blog. Until then, you get to wait with me.
After changing into the 'comfortable' hospital gown he decided he needed to use the restroom so he had a funny little sideways walk down the hall holding his gown. The nurse assured him that was the last time he would need to do that for a while because they will be putting in a catheter once he goes to sleep. I am sure you can imagine how happy that made him!!
They wheeled him into the room for anesthesia at 6:30 am and surgery started at 7. I am in the waiting room doing what people do in there.....waiting! Waiting for the promised update which should come around 8:30. As soon as I get it I will update the blog. Until then, you get to wait with me.
Thursday, July 30, 2009
Count Down
In less than 8 hours we will be at the hospital for surgery. The phone call came this afternoon letting us know that we will need to be at the hospital at 5:15 am.
From what we understand the surgery will last anywhere from 4 to 6 hours. They are supposed to come out and give me an update after an hour and a half. I will update the blog as soon as I know anything!
Please keep him in your prayers.
From what we understand the surgery will last anywhere from 4 to 6 hours. They are supposed to come out and give me an update after an hour and a half. I will update the blog as soon as I know anything!
Please keep him in your prayers.
Sporty New Jewelry
Yesterday David did his pre-surgery paperwork and bloodwork. They gave him a couple of sporty new bracelets to wear until Friday. Now everywhere he goes, he gets sideways glances, but when you are good looking like he is, those are a pretty regular occurrance. :)
He was able to charm the lady at the hospital out of a little bit of information. We learned that he will be either the first or second surgery of the day which means we will be at the hospital tomorrow at either 5:30 am or 7:30 am. Sounds like a night without much sleep and with a lot of apprehension. They also said that he will be in the hospital for 3-7 days depending on how things go. We are planning on 3!
So many of you have shared your love and concern and offered to assist us in so many ways that I can't keep track. Thank you all so much for everything!
He was able to charm the lady at the hospital out of a little bit of information. We learned that he will be either the first or second surgery of the day which means we will be at the hospital tomorrow at either 5:30 am or 7:30 am. Sounds like a night without much sleep and with a lot of apprehension. They also said that he will be in the hospital for 3-7 days depending on how things go. We are planning on 3!
So many of you have shared your love and concern and offered to assist us in so many ways that I can't keep track. Thank you all so much for everything!
Wednesday, July 29, 2009
What does the doctor have to say?
Today David will go to the hospital to do pre-surgery bloodwork and paperwork. I thought I would share some of the doctor's words explaining the surgery from a report he sent us.
"I have explained to David that I would recommend surgery to do a suboccipital craniectomy, a C1 laminectomy and a dural graft to see if we could get more room for the spinal cord to circulate at the cranial cervical junction, and thus reduce the likelihood of the syringomelia getting larger. It is not a 100% chance, but it gives him the best chance we have got, and this is what most doctors would recommend. Why? Because if the syrinx just continues to get bigger, it is going to cause numbness, disassociation of temperature and weakness, and ultimately paralysis. The goal is to try to divert some of that fluid around the spinal cord instead of through the spinal cord, and hopefully that dilation and fluid-filled space might collapse down, or at best, not get bigger. Sometimes they continue to get larger and you have to do a shunting procedure to try to reduce spinal fluid pressure."
What does that mean? They are going to make the opening at the base of the skull larger by 1 cm. They will also use some of the lining of David's skull to create a sling to support the cerebellum as well as to create a patch which will hopefully allow the cerebro spinal fluid (csf) to circulate normally.
We do not know what time surgery will be on Friday. The hospital will call us Thursday afternoon and let us know, so until then we wait.....
In the meantime, Minnie is home and resting. Her surgery went well and we hope she will soon be barking at the doorbell again.
"I have explained to David that I would recommend surgery to do a suboccipital craniectomy, a C1 laminectomy and a dural graft to see if we could get more room for the spinal cord to circulate at the cranial cervical junction, and thus reduce the likelihood of the syringomelia getting larger. It is not a 100% chance, but it gives him the best chance we have got, and this is what most doctors would recommend. Why? Because if the syrinx just continues to get bigger, it is going to cause numbness, disassociation of temperature and weakness, and ultimately paralysis. The goal is to try to divert some of that fluid around the spinal cord instead of through the spinal cord, and hopefully that dilation and fluid-filled space might collapse down, or at best, not get bigger. Sometimes they continue to get larger and you have to do a shunting procedure to try to reduce spinal fluid pressure."
What does that mean? They are going to make the opening at the base of the skull larger by 1 cm. They will also use some of the lining of David's skull to create a sling to support the cerebellum as well as to create a patch which will hopefully allow the cerebro spinal fluid (csf) to circulate normally.
We do not know what time surgery will be on Friday. The hospital will call us Thursday afternoon and let us know, so until then we wait.....
In the meantime, Minnie is home and resting. Her surgery went well and we hope she will soon be barking at the doorbell again.
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