Robyn's Journey with RSD

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From: airedale-mom Sent: 3/20/2007 2:58 PM
Hi Robyn,
I hope you get a good report and answers from the hematologist. I know someone that had a pulmonary embolism from a blood clot at Christmas and they told her 6 months of recovery time. Take care and God Bless. Mary Anne






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From: EARLIBYRD@msn.com
To: RSDOutreach@groups.msn.com
Subject: Re: Robyn's Story
Date: Tue, 20 Mar 2007 11:28:15 -0700

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Robyn's Story

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From: byrd45


Ketamine the story continues.....
In November 2006 I went back in for an inpatient Ketamine treatment. This procedure is done in the hospital neuro-ICU and I was infused Ketamine around the clock for five days. They start you out at a lower dose and gradually increase the dose as much as you can handle it. When you get to your high dose they maintain this until you go home. This treatment did cause me alot of hallucinations.The funniest one, that I don't think I will ever forget, happened when my husband and mom were visiting me during dinner one of the nights I was in the hospital. I had ordered spaghetti and meatballs for dinner and I was doing fine until my meal arrived. I wouldn't eat I was just staring at my meal and they were wondering what was up.It turned out that the meatballs had come alive and were talking to me. Well my mom thought if she cut one up it would snap me out of my trance and start me working on eating my dinner. I started screaming "No what did you do! You are killing them! It's dieing now and bleeding all cut up! I was a mess lol. They had to take all the meatballs off the plate and put them out of sight to calm me down. Yeah I would say Ketamine can cause some hallucinations that and the person in the chair who visited with me when noone else was there. Nice fellow but totally imaginary and in full living color too and could hear clearly every word he said! Bizarre!!!! Well you are saying right now no way right it was well worth it. I would do it again for the benefits it was well worth the hallucinations in my book. I wish I could still get the treatments but unfortunately a problem arose and it is impossible for me now. I had gone through an operation to have a port implanted so it would be easier for all my treatments since I don't have easily accessable veins anymore from the RSD. The operation went well and we started using the port two weeks after it was implanted for my first Ketamine booster series. After getting the five day infusions in the hospital they have you get a series of boosters over the following 6 months. This is why the port would have come in handy for me. Ports if they don't become infected can stay in the body anywhere from 2-10 years. I felt this was better than having a hiekman inserted in my chest each time.Anyhow, something went wrong and I developed a 5 inch long blood clot in the vein the port was sewn into.They performed angioplasty on me the next morning after being admitted into the hospital. Thankfully I knew the pain and swelling in my left arm was something abnormal(always be your own advocate)and insisted on seeing the doctor as soon as possible. They told me if I had waited a few days to a week longer I wouldn't be alive. Anyhow they were able to remove the first clot fully and were gining anti clotting drugs when a new clot formed much to all the doctor's surprise. They refused to believe me at first when I told them I wasn't feeling well and that it felt like before. I refused to back down though and when they did another ultrasound (which they didn't do until the next morning)they found a new clot there back in the same spot although not quite as large as the first one. I had just had a new port put in and we thought everything was going to be fine. Now they would have to remove the brand new port and remove the clot of course as well.They could not implant another one for me again.After all this you would think that would be all there is to tell but it isn't. The second clot couldn't be removed totally they had to leave residual clot behind or they would damage the vein and it would become a breeding ground for more clots to grow. A few days later while Cummadin(a strong blood thinning drug)I started having symptoms again and this time when I told them they didn't make me wait until the next day. They set up the ultrasound and sure enough there it was a new one this time in a new vein nearby but luckily not occluded(which means the clot wasn't clogging it totally).Well since there was blood flow and I had just gone through a secong angioplasty and an operation to take the port out they had to leave it alone.I was supposed to go home the next day but ended staying a few days longer because I started bleeding internally within my left arm where they did the angioplasty. The blood thinners had to be stopped so my arm could heal itself.I had to keep it elevated and heating packs on it around the clock for about two and a half weeks but it finally healed!Now I am waiting until next week when I will go for another ultrasound so we can see how the clot is and the residual area is as well. It is everyones hopes that my body will reabsorb the clot and residual clot matter over time.I will keep you all updated and I will be seeing a Hematologist as well who specializes in blood disorders and diseases and hopefully she can tell me definitely why this all happened.
Robyn


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From: byrd45 Sent: 8/10/2007 1:37 PM
Hi Everyone,
I wanted to come back and update you all on what happened since last time. I went for the Ultrasound and all the clots have been reabsorbed!!!!! It was such a relief I starting crying after they told me. They were tears of joy though and relief too! I also went to the Hematologist and after taking blood and testing it thouroughly she feels that the birth control pills and the fact that they went into that vein several times which means there was scar tissue there is why the clot formed.These are both risk factors in fact just having a foreign object in your vein is enough itself. So technically I had three risk factors if you look at it that way. She wasn't surprised it happened. In fact I was lucky it didn't happen the other four times I had a hiekmann inserted. What it comes down to is that I can never have blood drawn from my left arm again or used for an iv or hiekmann and if they try to use the other side it could happen again because now I am considered higher risk but they could also give me anti-clotting drugs first to keep it from happening.That is why I have not had any mor treatments and don't know if I will again. I'm thinking long and hard on the subject because after coming that close to dieing I sure am not anxious to go near that road again. Right now I am using my pain management doctor to help me with my RSD pain control and sheer will to get through the worst of times. Right now I am taking things one day at a time and recently went on a drug for severe depression since I was battling that as well from the RSD. My depression is alot better now and I am so glad I finally reached out of the hole I was in and asked my doctor for some help.That was a hard one for me as it can be for alot of people. I felt sad and ashamed and didn't want to admit I couldn't handle things alone. Everyone needs help sometimes even yourself as hard as that is to admit.
Love,
Robyn


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From: Liz3079 Sent: 8/12/2007 8:45 AM
Hi RObyn

I guess I missed most of this about the ketamine treatment. I usually try to read all the posts but sometimes I get so depressed for days.Did you see a psychiatrist for your depression or just a regular doctor. I have no family dr. and when I did call one that my friend went to they wouldnt see me said i need to see a neurologist for my wrist and hand.The neurologist in this town is not a good one at all.

So how did you get the blood clots.I am glad they are all gone. They are very dangerous.I know you are relieved.I am sure God is definitley watching over you.

Love and gentle hugs
liz


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From: byrd45 Sent: 9/20/2007 3:35 PM
Hi Liz,
I told my RSD doctor who is a neurologist but that doesn't mean you couldn't go to your family doctor and run it by him or her. Some family doctors will help with depression meds and others will want you to go to a psychiatrist. Even if it turns out they want you to go to a psychiatrist if you have the means to go I would give it a chance.You said you don't have a family doctor though so you would have to find one or you could ask your neurologist like I did.As for the blood clots I had complications from an implanted porticatheter.Which is similiar to an iv but is implanted inside the body for long time use.
Love,
Robyn


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From: byrd45 Sent: 10/24/2007 4:42 PM
Hi Everyone,
I just had my check-up with Dr. S. and it turns out that my RSD has spread some more in my right hand and that is why I can't feel my thumb and index fingers at all anymore. I have also been having very bad internal problems with my bowel and intestines and at times when I have to urinate it takes a real long time to actually be able to go, luckily that doesn't happen all the time. The problems with my intestines and bowel are alot more prevalent. I have pains up under my ribs and in my back that feels like someone is kicking me there. I am nauseous most of the day anymore and as the day gets later the symptoms increase. In the morning when I first wake up isn't too good either, but bedtime is by far the worst and whenever I have to pass a bowel movement. I'm not much of a cryer but the tears do flow then. I have a very high tolerance for pain and even so it is excruciating even with all the meds they give me. I can't even imagine if I didn't have the meds what life would be like for me and I cringe at the thought. Anyway getting back to Dr. S. he said the RSD has spread to the small fibers of my bowel and that is causing all these pains and problems and the swelling under my ribcage too. He feels the only thing that will help it is inpatient Ketamine for 5 days again in intensive care. He feels I am to high risk for outpatient because of my past in January with the blood clots and how sick I was. I agree with him on all that he is saying. I think it does need to be done in intensive care just in case they run into a problem. Hopefully that will not be the case, but I would feel more secure. I need the treatment because if I don't do anything there are cases of people who have RSD like that and the bowel just stops. Mine is running so slow even though I purposely eat alot of fruit and vegetables and drink water constantly. In fact that is all I drink except for an occasional treat. This problem didn't just start it has been happening for awhile but they hadn't diagnosed it until now. It was thought to be my meds at first and then the RSD but they didn't explain all this until recently. It was like this before I had the Ketamine procedure last time and totally went away for many months. Then gradually it started up again and now I am where I was again, so at least I know this treatment does help and I'm sure it would have stayed that way if I hadn't gotten sick. All those surgeries messed up all the positive strides I had made. I put my name on the Ketamine list and am praying it won't get alot worse until they call me. It could be awhile maybe even up to a year since they are only alotted one room and can only put one patient per week in the one room at a time. I'm biding my time in the meantime and when they call I will be ready. The specialist said as long as they give me anti-clotting drugs beforehand and put the catheter in my upper right arm it would be fine. The doctor suggested doing it in the OR though, not bedside, and I am going to be stubborn about that. They like to do that type at bedside, but if you go to the OR they are alot more prepared if something goes wrong. Lastly the surgeon has to agree to do it so hopefully I didn't scare him off after last time. I guess we will just have to see what happens. Keep your fingers crossed for me will you?
Love,
Robyn

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From: byrd45 (Original Message) Sent: 10/23/2006 9:04 AM

Hi Everyone,
My story starts on a warm day in May it was so beautiful I remember debating whether to walk to work that day. The car won out though, since I just had too many errands to get done in a short span of time in the afternoon. Walking into the school building that morning everything seemed right in my world, and little did I know that would be the last time it wouldn't feel ripped apart and turned upside down. There are many days still I wish I could hit rewind and stop myself from walking into the school building that morning. Well going about my usual routine I signed in and made my way to the classroom which was already in session. I knew the moment I walked through the door we where going to have a rough day with (for the sake of protecting a minor we will call him Bill) Bill. He was making his intentions obvious to everyone by pacing around the front of the room saying nasty things to anyone who would listen, and acting agressive hoping someone would take his bait to get into an argument with him. In the meantime, the teacher was miraculously teaching the class the best she could through all this commotion emmulating from him. The teacher (who I am going to call Lynn here) is one of the most awesome people I have ever met. She has the patience of a saint and then some. Well it wasn't too long when he kept escalating despite both of our efforts to calm him and repeated requests from me to take a little walk with me to calm down. Nothing was working this day,his eyes looked angry, mean and worst of all determined. Well class went on I tried my best to help the other students with their classwork and at the same time keeping everyone from buying into the trash that was coming out of Bill's mouth. It isn't always for my students to concentrate since they all have special needs. Add on Bill and his garbage mouth running amuck and it leads to a rough environment for any student to learn in and twice as bad for someone who has trouble concentrating in the first place. Well it wasn't to much longer when all this agressive behavior led to bigger problems. Exactly what happened was.....he said something particularly nasty about another student's (we will call Anthony) Grandmother. Anthony yelled back not to talk about his grandmom. He had been real upset about his grandmom and everyone in the class knew that she was real sick. Well Bill yelled back,"Who cares about your %$#&@*& stupid Grandmom I hope she drops dead!"! As you probably guessed already that did it and fists were flying between those two in a split second. Lynn broke them apart and grabbed Anthony away talking to him and hugging him trying to calm him down he was so upset he was crying for gods sake. This is when Bill is trying to get back at him again and again and Lynn keeps getting between him and Anthony and the other kids won't let him get close either. He is red faced now and boiling mad. The room is trashed he has dumped all the books in the library on the floor and ripped posters down and destroyed anything he could reach. I knew I had to somehow get him out of there away from those kids before one of them got seriously hurt. He was in front of me about a foot so I start talking to his back. "Come on Bill let's go outslde we can talk, get a drink from the fountain, and calm down a bit. No answer just more cursing at Anthony. I tried again this time telling him we could call his mom too so he could talk to her, and that is when he whirled around ran at me and slammed me with outstreched arms in the center of my chest! I was airbourne and shocked that I was caught totally off guard.
cont......on next post



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From: byrd45 Sent: 10/23/2006 10:03 AM
Robyn's Story cont.....

I just remember waiting to hit the floor and when I did hit how much it hurt like hell. I couldn't breathe I figured he knocked the wind out of me and I was amazed to see that what I landed on was the stone wall with the bulletin board on it. When I stopped seeing double I was furious and the first thing that came out of my mouth was, "How dare you hit me! Do you realize what you have done here and how much trouble you are in!" Bill yelled back get the &%*$ out of my face or I'll do it again and then he smiled. Well that is when I left to get security. It took me so long to get to the other end of that hallway. It hurt so bad in my chest, my neck hurt, and I was still having trouble catching my breath. The police were called, charges were pressed, later dropped by school(they never asked how I felt about that one.),and a year later Bill was finally placed in a special school. That was back in May of 2001 and that is where my story starts. Since my injury was work related I was sent to be checked out by a WC doctor and sent home to rest. Rest that's a joke. I couldn't sleep with all that pain! I had alot of sleepness nights back then and still do today.They told me I sprained my neck and my chest got bruised and that with rest I would be fine in a week. I really wish he had been right. Apart of me knew something was wrong even that first night. I couldn't feel my fingers they were so numb and so freezing cold andbright red too(I have been told this is when my RSD started). The pain was unbearable like nothing I have ever been through before that day. I cried out of frustration when the medicines they gave me really didn't help much. I told the doctor about my numbness in my fingers, and the redness he said that I probably banged my hand when I landed and brushed it off. After a week he insisted I go back even though I could hardly walk and I would shake whenever I tried to move. Well I didn't even make it through lunch that day. I had everyone so scared because of how stark white I looked and the shakiness they insisted I go right to the school nurse and see what she recommended. She took my blood pressure and it was 198 over 110. She immediately made me give her my husbands phone number at work so she could call him. She was afraid I could have a heart attack or stroke with my pressure that high and she didn't want me to drive myself to the doctor. I went and I let them know that under no circumstances would I see the doctor who sent me back to workso they switched me to someone human.That was my last day of work over five years ago. I miss it so much but at this point still am not even close to being well enough to work again. I tell myself maybe someday. Well since then my life is so different. I have changed and this disease has changed my family too. I have been through so many medical procedures and doctors it is all like a never ending whirlwind to me. I know that is a part of my life now and I have come to accept that even if I don't like it to much. Pain is a part of my daily routine now I deal with it and try my very best to rise above it. There are alot of times that it gets the best of me but each day is a new day and each day I try anew to make it a good day and a positive one as well. Then there are those other black times where it takes over and is just to much to handle. I still feel this way at times but I am happy to say that I try my best to keep these feelings short and when they come I distract myself with one of my favorite activities and hope it passes quickly. I've found it doesn't stay around too long if you fight it off. Well my RSD started in my hands worse in the right and kept spreading. It went into my face and my inner ear which messes with my equilibrium. After that my right hip and thigh and all the while my doctor fighting giving me treatments. Worker's comp would then make me do interviews or travel far for IME's which isn't great after a treatment. Then the treatments wouldn't stick and it would spread more and back in for another treatment.
Then they decided to not pay for my treatments until the judge made a ruling that said they had to. Two and a half years later we finally have that ruling and this past July 2006 I was allowed t go back in for a treatment.While I was waiting my RSD had all that time to spread and now it is full body and is in my stomache as well. My family has been pulled apart by this whole thing too. I am not the same mom,or wife I was. I love them just as much and they know that but it is heartbreaking for them too. Now because they kept me from going in like that my doctor says that we have to treat my RSD aggressively so I must go in as soon as my treatment wears off. It has been three months and it is already wearing off now so I guess it won't be long until I go back into the hospital again. This time they are going to try Ketamine on me. I will let you all know how it goes. Well that is my story for now and I will come back and update it here and there as things change.


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From: byrd45 Sent: 3/20/2007 2:28 PM
Ketamine the story continues.....
In November 2006 I went back in for an inpatient Ketamine treatment. This procedure is done in the hospital neuro-ICU and I was infused Ketamine around the clock for five days. They start you out at a lower dose and gradually increase the dose as much as you can handle it. When you get to your high dose they maintain this until you go home. This treatment did cause me alot of hallucinations.The funniest one, that I don't think I will ever forget, happened when my husband and mom were visiting me during dinner one of the nights I was in the hospital. I had ordered spaghetti and meatballs for dinner and I was doing fine until my meal arrived. I wouldn't eat I was just staring at my meal and they were wondering what was up.It turned out that the meatballs had come alive and were talking to me. Well my mom thought if she cut one up it would snap me out of my trance and start me working on eating my dinner. I started screaming "No what did you do! You are killing them! It's dieing now and bleeding all cut up! I was a mess lol. They had to take all the meatballs off the plate and put them out of sight to calm me down. Yeah I would say Ketamine can cause some hallucinations that and the person in the chair who visited with me when noone else was there. Nice fellow but totally imaginary and in full living color too and could hear clearly every word he said! Bizarre!!!! Well you are saying right now no way right it was well worth it. I would do it again for the benefits it was well worth the hallucinations in my book. I wish I could still get the treatments but unfortunately a problem arose and it is impossible for me now. I had gone through an operation to have a port implanted so it would be easier for all my treatments since I don't have easily accessable veins anymore from the RSD. The operation went well and we started using the port two weeks after it was implanted for my first Ketamine booster series. After getting the five day infusions in the hospital they have you get a series of boosters over the following 6 months. This is why the port would have come in handy for me. Ports if they don't become infected can stay in the body anywhere from 2-10 years. I felt this was better than having a hiekman inserted in my chest each time.Anyhow, something went wrong and I developed a 5 inch long blood clot in the vein the port was sewn into.They performed angioplasty on me the next morning after being admitted into the hospital. Thankfully I knew the pain and swelling in my left arm was something abnormal(always be your own advocate)and insisted on seeing the doctor as soon as possible. They told me if I had waited a few days to a week longer I wouldn't be alive. Anyhow they were able to remove the first clot fully and were gining anti clotting drugs when a new clot formed much to all the doctor's surprise. They refused to believe me at first when I told them I wasn't feeling well and that it felt like before. I refused to back down though and when they did another ultrasound (which they didn't do until the next morning)they found a new clot there back in the same spot although not quite as large as the first one. I had just had a new port put in and we thought everything was going to be fine. Now they would have to remove the brand new port and remove the clot of course as well.They could not implant another one for me again.After all this you would think that would be all there is to tell but it isn't. The second clot couldn't be removed totally they had to leave residual clot behind or they would damage the vein and it would become a breeding ground for more clots to grow. A few days later while Cummadin(a strong blood thinning drug)I started having symptoms again and this time when I told them they didn't make me wait until the next day. They set up the ultrasound and sure enough there it was a new one this time in a new vein nearby but luckily not occluded(which means the clot wasn't clogging it totally).Well since there was blood flow and I had just gone through a secong angioplasty and an operation to take the port out they had to leave it alone.I was supposed to go home the next day but ended staying a few days longer because I started bleeding internally within my left arm where they did the angioplasty. The blood thinners had to be stopped so my arm could heal itself.I had to keep it elevated and heating packs on it around the clock for about two and a half weeks but it finally healed!Now I am waiting until next week when I will go for another ultrasound so we can see how the clot is and the residual area is as well. It is everyones hopes that my body will reabsorb the clot and residual clot matter over time.I will keep you all updated and I will be seeing a Hematologist as well who specializes in blood disorders and diseases and hopefully she can tell me definitely why this all happened.
Robyn