Thursday, June 23, 2011
Next Treatment
Trav's next treatment is set for July 11-15, 2011. It will be another week long stay in Salt Lake City and the U of U Pain Clinic. This time he will be receiving a IV treatment daily of ketamine. Ketamine is a drug used to put people under for surgery. in lower doeses it can help reset CRPS patients nerves and have pain controlling effects. We will be at the clinic for 5-6 hours daily while he is monitored with the treatment. Hope this is the one to do the trick and get him some relief. I have read a lot of good things about it and very little bad. The worst I have read is he can have hallucinations while on it. Also it has a 20 % chance of doing nothing to help. So I will keep everyone updated as it gets closer.
Sunday, June 12, 2011
The first post from Travis
So I'm sure it's nice to hear from my mom, but I figured I would share what it's like to actually be the 17 year old that's going through this. Luckily I've had an amazing support group! Without my girlfriend, family and friends who knows where I would truly be right now. Although things could be going worse I'm sure I speak for everybody with CRPS that this isn't exactly a walk in the park. Over the last eight months I've gone from a kid who would try to play sports and be outside as much as I possibly kid to somebody who isn't even half that active. Since it's summer some of that is starting to change but I'm not sure if I'll have all of that drive back again.
So first I'll try to explain the pain that I feel every second of every day. I've found that it's kind of impossible to find one way that explains how the pain acts all the time. My leg is so sensitive that even when somebody brushes up against the hairs on my leg it feels like I was slapped on a really bad sun burn. The inside of my leg is a totally different feeling I have the most intense aching feeling all the way to the bone and it never stops. My foot and leg always feel ice cold while it's burning inside. My average pain on a normal day is a 9/10. I can't wear pants and even wearing shorts is uncomfortable. Stress adds to this pain. And the frustration I've been going through from none of the treatments working at all so far has really increased it too.
My sleeping pattern has gone crazy since I was diagnosed with CRPS I'm usually awake until about three or until my body decides to shut itself off and force me to fall asleep. My attention span is so short that it's often hard to sit through a normal movie, I get so wound up and stressed out over the smallest things too.
The hardest part about living with chronic pain is having to grow up so fast. While most of my friends are living their high school lives I'm going to the hospital or I'm in too much pain to do what they are doing. I can't go to the gym and play basketball or go boating and wakeboard like I used to do. So I've been forced to find other things to consume my time. Most of these things don't stick around for too long because my attention span doesn't last long enough to enjoy them. I sit here and think to myself why did this happen to me?
But while most people will call me crazy to say that something that has put me in the hospital, taken my life away from me and put me in constant pain has had some good things come from it too. I've grown closer too some very special people in my life (you know who you are), I've figured out how lucky I used to be and my whole outlook on life has changed!
If I could take one lesson from all the frustration, grief and anger is don't take what you have for granted because at any given moment it can be taken away and I think everybody learns this at some point in their life. Unfortunately some learn sooner than later.
So first I'll try to explain the pain that I feel every second of every day. I've found that it's kind of impossible to find one way that explains how the pain acts all the time. My leg is so sensitive that even when somebody brushes up against the hairs on my leg it feels like I was slapped on a really bad sun burn. The inside of my leg is a totally different feeling I have the most intense aching feeling all the way to the bone and it never stops. My foot and leg always feel ice cold while it's burning inside. My average pain on a normal day is a 9/10. I can't wear pants and even wearing shorts is uncomfortable. Stress adds to this pain. And the frustration I've been going through from none of the treatments working at all so far has really increased it too.
My sleeping pattern has gone crazy since I was diagnosed with CRPS I'm usually awake until about three or until my body decides to shut itself off and force me to fall asleep. My attention span is so short that it's often hard to sit through a normal movie, I get so wound up and stressed out over the smallest things too.
The hardest part about living with chronic pain is having to grow up so fast. While most of my friends are living their high school lives I'm going to the hospital or I'm in too much pain to do what they are doing. I can't go to the gym and play basketball or go boating and wakeboard like I used to do. So I've been forced to find other things to consume my time. Most of these things don't stick around for too long because my attention span doesn't last long enough to enjoy them. I sit here and think to myself why did this happen to me?
But while most people will call me crazy to say that something that has put me in the hospital, taken my life away from me and put me in constant pain has had some good things come from it too. I've grown closer too some very special people in my life (you know who you are), I've figured out how lucky I used to be and my whole outlook on life has changed!
If I could take one lesson from all the frustration, grief and anger is don't take what you have for granted because at any given moment it can be taken away and I think everybody learns this at some point in their life. Unfortunately some learn sooner than later.
Saturday, June 11, 2011
June 2011
Here we are to June 2011. We have gone in for the week long treatments.
The 1st day was great! They were able to get it numb but still able to work it. So he had a small PT session. Now all we are looking for is some not total pain relief and each time they dose it to get longer relief. We go home for the weekend and then start the week long on Monday. when they dose it Mon it doesn't do half of what it did Fri. Thinking the catheter could have moved some they try on Tues. and get the same effect. Play with it and redo it on Wed they get nothing. Not any part goes numb. Same story on Thurs. look at it again under xray and its in the perfect place. Give him a different drug and it knocks him out. Asleep and snoring!!! No pain relief just sound asleep. So after sleeping a little off we head back to my sisters where we have been staying and he sleeps 4 more hours. Fri comes and they dose it with half a dose and the same thing he is so tired can't keep his eyes open. So this tells them that the drugs have been going straight into his system and not to the desired nerve root. dr. says "Its lucky he isn't a girl as having a baby epidural wouldn't work". He got a little tingling in his hands one day and that is why. So with treatment plan 3 not working where does that leave us?
Well they sent us home yesterday with a plan to get moving no matter the pain. Try the best he can to work through it. So far they have all wanted him to stop if the pain flared. Still on crutches and not walking full weight but to try small amounts of walking motion and light touches. Don't over do but try hard. This is the step we are on and hoping its the last. We know there are more medical treatments but if we can avoid them we will.
The next medical step is a ketamine infusion. Yes it scares me but it has been around a long time. Its not a new drug. He will be monitored with the whole process. It has the chance of making him pain free and that is a chance we have to take. We hope for just a reduced amount of pain so he can move more. I can't stand by and watch my healthy active athlete turn into a home bound with no life any longer. Everything I read claims keeping physical is the best for it. If this treatment will allow him enough pain relief to get back to light activity then more he will be on his way to remission.
The 1st day was great! They were able to get it numb but still able to work it. So he had a small PT session. Now all we are looking for is some not total pain relief and each time they dose it to get longer relief. We go home for the weekend and then start the week long on Monday. when they dose it Mon it doesn't do half of what it did Fri. Thinking the catheter could have moved some they try on Tues. and get the same effect. Play with it and redo it on Wed they get nothing. Not any part goes numb. Same story on Thurs. look at it again under xray and its in the perfect place. Give him a different drug and it knocks him out. Asleep and snoring!!! No pain relief just sound asleep. So after sleeping a little off we head back to my sisters where we have been staying and he sleeps 4 more hours. Fri comes and they dose it with half a dose and the same thing he is so tired can't keep his eyes open. So this tells them that the drugs have been going straight into his system and not to the desired nerve root. dr. says "Its lucky he isn't a girl as having a baby epidural wouldn't work". He got a little tingling in his hands one day and that is why. So with treatment plan 3 not working where does that leave us?
Well they sent us home yesterday with a plan to get moving no matter the pain. Try the best he can to work through it. So far they have all wanted him to stop if the pain flared. Still on crutches and not walking full weight but to try small amounts of walking motion and light touches. Don't over do but try hard. This is the step we are on and hoping its the last. We know there are more medical treatments but if we can avoid them we will.
The next medical step is a ketamine infusion. Yes it scares me but it has been around a long time. Its not a new drug. He will be monitored with the whole process. It has the chance of making him pain free and that is a chance we have to take. We hope for just a reduced amount of pain so he can move more. I can't stand by and watch my healthy active athlete turn into a home bound with no life any longer. Everything I read claims keeping physical is the best for it. If this treatment will allow him enough pain relief to get back to light activity then more he will be on his way to remission.
May 2011
Well we have our first visit at the U of U Pain Center. They take a different approach to pain treatment then other clinics. They treat the whole body and mind. So the first visit he see's a psychologist, physical therapist and a group of dr.'s. The have 3 main MDs in the clinic and then each MD has a few fellows under him. The usual plan is you visit with all and then come back a week later and get the plan of treatment. They felt Travis's case was severe enough to start treatment same day. So he gets put into a therapy program and meds changed. The add a new one that will help boost his bones and up his other nerve drugs.
Everything goes great until the" bone booster" drug has a rare side effect and sits in his esophagus and rubs it raw. He starts with acid reflux issues and within 24 hours is having full spasms in his esophagus. He ends up dehydrated and 2 trips to the ER. Tells me that our small town hospital has NO idea what CRPS is. I almost had to deck the ER dr. after I tell him to not touch Trav's right leg due to hypersensitivity from CRPS and he grabs it 2 times.After no improvement we have a scope done in Davis Hospital which is where our primary care dr. is at. Its about 50 miles from home. They have a more of a clue down there. Yes he has road rash for a esophagus. They give him some more meds but the next day he is still in so much pain he can't even swallow his own spit without spasms. So we go back to Davis Hospital and check him in for a 2 night stay.
That problem solved we go back to the U of U pain clinic for a full epidural. This gives him a few hours of pain relief. The pain came back but he was able to do a little PT while it was numb. So they decide to try a different type of epidural where they leave the catheter in a week and dose it everyday.
Everything goes great until the" bone booster" drug has a rare side effect and sits in his esophagus and rubs it raw. He starts with acid reflux issues and within 24 hours is having full spasms in his esophagus. He ends up dehydrated and 2 trips to the ER. Tells me that our small town hospital has NO idea what CRPS is. I almost had to deck the ER dr. after I tell him to not touch Trav's right leg due to hypersensitivity from CRPS and he grabs it 2 times.After no improvement we have a scope done in Davis Hospital which is where our primary care dr. is at. Its about 50 miles from home. They have a more of a clue down there. Yes he has road rash for a esophagus. They give him some more meds but the next day he is still in so much pain he can't even swallow his own spit without spasms. So we go back to Davis Hospital and check him in for a 2 night stay.
That problem solved we go back to the U of U pain clinic for a full epidural. This gives him a few hours of pain relief. The pain came back but he was able to do a little PT while it was numb. So they decide to try a different type of epidural where they leave the catheter in a week and dose it everyday.
Few pics
These are of his foot back in March 2011. It has now moved up his leg and he gets the purple black/blue color up to almost his knee. his ankle swells up huge.
Feb 2011
So we have a diagnoses but what does that mean? The first treatment that is tried are sympathetic nerve blocks and lumbar nerve injections. This is suppose to help block the nerve and ease the pain so he can do physical therapy. Therapy being the best treatment. Keep the affected part moving and functioning. Easy to say when you are not in burning pain and the slightest touch, breeze or temperature change puts you in even more pain. So over the next 3 weeks Trav goes through 3 different nerve blocks. None have helped at all. He gets put on more and more drugs that are not helping either. We have been realizing that not many people in our small town know or have even heard of CRPS. The pain dr. has treated some but never treated anyone with it like Travis has.
Its March 2011 and no relief. So we get referred to the U of U Pain Clinic in Salt Lake City, UT. 3 month wait to get in, so what to do until then? Trav has been out of school since Jan. and has had his classes cut down to 2 a day home schooled. we search everything online and find another pain clinic in Salt Lake. The Dr. had trained at the U of U. So we set up a visit with them. Before our first visit there we end up at the Uof U ER to see if they can get him into the pain center any faster. They help us to understand that pain meds really don't work on CRPS as its a neurological issue and it some how blocks what makes the drugs work. They give Trav a IV of dilaudid which is stronger the morphine and he got minor relief for about 30 min. No help with getting into the pain clinic any sooner.
On to Summit Pain Center. They tried another nerve block so that totaled 4 blocks that didn't work. They suggested a nerve stimulator be implanted in his back as the next and final step. But also said they were not sure that would even help. Only other suggestion was to change up his meds to a different nerve medication.
Its March 2011 and no relief. So we get referred to the U of U Pain Clinic in Salt Lake City, UT. 3 month wait to get in, so what to do until then? Trav has been out of school since Jan. and has had his classes cut down to 2 a day home schooled. we search everything online and find another pain clinic in Salt Lake. The Dr. had trained at the U of U. So we set up a visit with them. Before our first visit there we end up at the Uof U ER to see if they can get him into the pain center any faster. They help us to understand that pain meds really don't work on CRPS as its a neurological issue and it some how blocks what makes the drugs work. They give Trav a IV of dilaudid which is stronger the morphine and he got minor relief for about 30 min. No help with getting into the pain clinic any sooner.
On to Summit Pain Center. They tried another nerve block so that totaled 4 blocks that didn't work. They suggested a nerve stimulator be implanted in his back as the next and final step. But also said they were not sure that would even help. Only other suggestion was to change up his meds to a different nerve medication.
A little about CRPS/RSD
For many years the condition has been known as RSD or Reflex Sympathetic Dystrophy. The new name is CRPS or Complex Regional Pain Syndrome. Its a chronic neurological syndrome characterized by:
This is a great link to find out more info on CRPS.
Now its rare but at the same time its not. A lot of people have a mild case or are just not diagnosed correctly. Its different on everyone and treated different too. That to me is the hardest thing to deal with is its not just 1 form of treatment and you get relief.
- severe burning pain
- pathological changes in bone and skin
- excessive sweating
- tissue swelling
- extreme sensitivity to touch
- color change in the effected area
This is a great link to find out more info on CRPS.
Now its rare but at the same time its not. A lot of people have a mild case or are just not diagnosed correctly. Its different on everyone and treated different too. That to me is the hardest thing to deal with is its not just 1 form of treatment and you get relief.
How it began...
This is told from my point of view (I'm Mom). I hope to get Trav to write here but we will see.
Its Oct 2010 and Trav has been playing in a rec basketball league with his friends. Sky View team tryouts are about 3 weeks away. Not sure the exact details of the play but he went for the ball and a big kid from the other team came down on his ankle. My heart sank as I watched him on the floor. I was hoping it was nothing but a simple sprain but in my heart I knew it was more. Went to the ER that night, nothing was broke so that was a good sign. The next week still no improvement so I got an appointment with a local foot Dr. Trav got to wear a boot and crutches for a while.
November rolls around things still are not improving so I schedule an appointment in Salt lake with a orthopedic Dr. Few days before that Trav is in physical Therapy and has a new pain which turns out to be blood clots. We get scans done to diagnose that and find out how deep they are. Also get a MRI to check on the ankle. Travis's main dr. starts him on blood thinners. what a treat for anyone but a kid this sucked!!! Shots every 12 hours and then basically feeding my son rat poison pills. Not a good feeling. :(
We get into the new dr. and he says everything looks great. Basically Trav has a 3rd degree high ankle sprain. Should have blown his ankle out but he has very loose ligaments and that saved him. No reason as to why he got blood clots but it can happen. he should be good within a month to go back to basketball. So for the next few weeks he does all he can to strengthen and get back. He has a late tryout for the school basketball team and on the 2nd day he rolls the same ankle off another guys foot.
So we are back to the Dr. and in the boot. Looks like no basketball for his junior year. Its Christmas and its the worst we have ever had. The one thing about Travis is all he has wanted since he was maybe 5 was to play ball in high school. He has worked daily at the gym and in the front yard on his game. He played other sports but basketball is and always has been his first love. he feels like it has all been taken away and what could get worse.
Well it does get worse. He develops more blood clots. So back on blood thinners for 3 months minimum. So even if the ankle gets better no sports. We go back to the ankle Dr. after a few weeks of no improvement, if anything its worse. Its swollen and sore. Why isn't this getting better? he mentions a rare condition called RSD or CRPS. But doesn't want to do anything yet for it. So I am not one to just wait and I research it on the internet and talk to his primary care Dr. about it. He has seen it and says it sounds like it could be that. we get into the local pain clinic the first of Feb. to have it looked at.
The local pain clinic has seen this and he is positive that its RSD/ CRPS. Our next step is nerve blocks. The faster you can treat this condition the better your chances of remission are.
Its Oct 2010 and Trav has been playing in a rec basketball league with his friends. Sky View team tryouts are about 3 weeks away. Not sure the exact details of the play but he went for the ball and a big kid from the other team came down on his ankle. My heart sank as I watched him on the floor. I was hoping it was nothing but a simple sprain but in my heart I knew it was more. Went to the ER that night, nothing was broke so that was a good sign. The next week still no improvement so I got an appointment with a local foot Dr. Trav got to wear a boot and crutches for a while.
November rolls around things still are not improving so I schedule an appointment in Salt lake with a orthopedic Dr. Few days before that Trav is in physical Therapy and has a new pain which turns out to be blood clots. We get scans done to diagnose that and find out how deep they are. Also get a MRI to check on the ankle. Travis's main dr. starts him on blood thinners. what a treat for anyone but a kid this sucked!!! Shots every 12 hours and then basically feeding my son rat poison pills. Not a good feeling. :(
We get into the new dr. and he says everything looks great. Basically Trav has a 3rd degree high ankle sprain. Should have blown his ankle out but he has very loose ligaments and that saved him. No reason as to why he got blood clots but it can happen. he should be good within a month to go back to basketball. So for the next few weeks he does all he can to strengthen and get back. He has a late tryout for the school basketball team and on the 2nd day he rolls the same ankle off another guys foot.
So we are back to the Dr. and in the boot. Looks like no basketball for his junior year. Its Christmas and its the worst we have ever had. The one thing about Travis is all he has wanted since he was maybe 5 was to play ball in high school. He has worked daily at the gym and in the front yard on his game. He played other sports but basketball is and always has been his first love. he feels like it has all been taken away and what could get worse.
Well it does get worse. He develops more blood clots. So back on blood thinners for 3 months minimum. So even if the ankle gets better no sports. We go back to the ankle Dr. after a few weeks of no improvement, if anything its worse. Its swollen and sore. Why isn't this getting better? he mentions a rare condition called RSD or CRPS. But doesn't want to do anything yet for it. So I am not one to just wait and I research it on the internet and talk to his primary care Dr. about it. He has seen it and says it sounds like it could be that. we get into the local pain clinic the first of Feb. to have it looked at.
The local pain clinic has seen this and he is positive that its RSD/ CRPS. Our next step is nerve blocks. The faster you can treat this condition the better your chances of remission are.
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