Wednesday, November 19, 2014

Intrathecal Pain Management

Somewhere someone is going to Google, Safari, Firefox or Bing "Intrathecal Pain Pump"," Medtronic SyncroMed", or something like that. This is for you.
 I, too did my own searching for it and I would have loved more information. I haven't blogged or written anything here in years. There are a lot of reasons that I haven't posted in a while. It's not a lack of something to write about. There are countless things that I could post but the two main reasons are 1: I haven't been well at all, and 2: I usually do everything from my iPhone. Blogging is just not easy on a phone. When I'm at work, I'm at a computer the whole time so I don't want to be on a computer at home. The reason I am blogging today is because I'm hoping this post will help inform and perhaps give hope to those that suffer from chronic pain. I want to share my experience with an intrathecal pain pump. Every search and post I read was very old and not informative enough.

 First off, I will give you the back story. I'm a 32 year old wife and mother of two daughters now age 9 and 7. In October of 2009 things seemed perfect for me. My daughters were (and still are) healthy, I had started a new job that allowed me to work at night (so I can be with my children during the day), provided me with great health insurance which is very important because I've been diabetic since age 12 and financial stability. Life came together. I was happy and relatively healthy. I had a few problems here and there but nothing really major for a while. My health insurance was so awesome, I was able to get an insulin pump at no charge to better manage my diabetes. I was apprehensive at first, but my trainer at work had one and highly recommended it. And at no cost, why not at least give it a shot? So I did and I loved it, but that's an entirely different story. Anyway, life was great. Thanksgiving was great, Christmas was great, even New Year's was awesome. However, toward the end of January 2010 things had changed. This is my story. First I will start with how I ended up in chronic pain. It's a long story so bare with me. I started with horrible abdominal pain and nausea. I went to the ER and they couldn't find anything wrong with me. They said it was probably a stomach virus and sent me on my way. After two weeks of flare ups, the pain wasn't going away so I went back to the ER, again, they couldn't find anything wrong me. In February alone, I went to the emergency room twice. The second time, I had the same doctor that I did the first time I visited in February and he said "if this is the same thing I saw you for two weeks ago, I can't do anything for you. Do you want me to give you an IV?" He recommended that I see a GI doctor to have my gall bladder checked out. I left, declining the IV in tears. 

I can't describe the awful pain. It felt like there was a hot knife in my right side and pain was shooting around to my back and up in between my shoulder blades. I took his advice and ask my primary care doctor for a referral to a GI doctor. The first thing he wanted to do was an upper GI and colonoscopy. This was in March. I thought it was weird thing to do to see a gall bladder but I agreed to do it. He didn't find anything. This is a doctor that just didn't care. I would tell him my symptoms and he would just ask the same questions over and over again. Uncomfortable questions like "is there blood in your stool." I swear he asked me this twice each visit. Overall, he was a jerk. It's like he didn't listen to anything I was saying. I asked him how my gall bladder looked and he said he didn't check it. Instead of checking it, he ordered blood work, a CT scan, an MRI. When those came back "fine," by this time I had 3 more ER visits, and it was May. He ordered the HYDA scan, that too was fine. In June, he ordered a gastric emptying study to see if my stomach was digesting slower. By this time, the radiography techs came to know me. And gave me the results of it immediately. They said my stomach digests 5% slower than other people. This could be normal for me. And it's only 5%. They warned me that the doctor I was seeing would tell me that my problem was the gastric emptying and advised me NOT to listen to him. The test was normal. This doctor has a bad reputation, and they were right. He told me my stomach was slow and that's what caused my symptoms. June saw another ER trip and apparently, the ER doctors put it in my chart that I was just seeking pain medication, even though I declined any medicines, I just wanted them to find what was wrong with me and make it stop. I repeatedly said "No narcotics, find what's causing the pain then we can treat it to make it go away." But they wouldn't help me. 

Each time I went back they looked at my previous visits and refused to do anything more. I was frustrated. At the end of June, I always take time off work so we can do something for my husbands birthday. That year we went on vacation to the beach for a few days with my brother and his family. I used all of my time off that I had left at work for this family time. All the calling out for days at a time and tests burned through most of my days. But I wasn't giving up my vacation. My moms house is on the way home from the beach so we spent the last night of our vacation there. By morning, we needed to make the 3 hour drive home so I could go to work the next night. I couldn't move come. I felt so weak and sick from the pain that my husband had to drive us home. (I'm a control freak, I don't let anyone drive.) 

The next day, I went back to work in so much pain that I was nearly in tears. I called my husband on my dinner break. I didn't know what to do. I went to my car to lay down and talk to him. I told him I couldn't go back to the emergency room, they wouldn't help me. My doctor wasn't helping me. The last thing he did was order lab work. I had to drive to 4 different labs only to find out that the blood work he ordered could only be tested in Italy. That's right, Italy. As if I could go there for blood work! My husband didn't know what to tell me. I didn't know what to do so I just went back into work. On my way back to my desk, a friend of mine stopped me and said I looked awful. And she asked if I had been tested for Pancreatitis. She explained that I needed to get help. My symptoms were similar to her fathers symptoms and he didn't get help in time. He died in the hospital after a week. I told her that I didn't know where to go or what to do. She suggested I go to a hospital that is out of the this medical network so they couldn't see my previous visits. I took her advice and left work early. I went to a hospital that is about 40 miles away and out of the hospital network. It actually wasn't busy at all. I walked up to the desk, all I could say was help me. Driving there, I felt like I was in a game of Mario Kart. It had taken a toll on me and it was after midnight. They took my information and took me straight back. I was discouraged. I felt like no one would find what was happening to me. The doctor came in, pressed on my abdomen where it was hurting, ordered lab work, and gave me enough pain medicine to help me sleep. A couple of hours later, he came back in and told me I had acute pancreatitis.

I didn't believe him. He printed the lab work to show me. It was about 5am when I sent my husband a text message about it. We both didn't know what it entailed or the treatment. But finally... Finally after months of tests, pain, tears, and frustration, I had a diagnosis. My husband and I both thought the doctor would give me a medication and I could go home but it was much more complex than that. 

 He admitted me into the hospital, had a PICC line place and I stayed for almost two weeks. Armed with this new knowledge, I went back to my doctor that was awful and told him what they said. I had my lab work in hand and results. He still didn't believe it. Now, 2 main causes are alcohol... I'm not a drinker. And the other is gall bladder. In August, he sent me to someone to have my gall bladder taken out in August. After it was removed, I felt a little better. I went 3 weeks without having any attacks. Then at the end of September, it happened again. I went back to the ER closest to me (the one that couldn't find anything wrong with me), and basically told them what was happening. That became a pattern. I spent another week in the hospital. October saw two more attacks. Each time, I had to tell them I was having an attack so they would order the blood tests. I also switched doctors in October, I couldn't go back to the other guy that just didn't care what was happening to me. This new doctor referred me to a Pancreatic specialist and sent all my tests to him. I saw him in November. He looked at them and told me that my pancreas didn't look bad considering all the attacks that I had. He recommended he put a stent in my pancreatic duct that would fall out in two weeks. I agreed and it was done two days before Thanksgiving. From the day the stent was placed, my pancreas started spasming. Anything caused it spasm, even water. December came, the stent had come out and I was back in the ER with pancreatitis again and other hospital stay in early December.... I recovered from that attack, I had a wonderful Christmas with my family. I was ready to get back to work. The doctors had told me that my last attack was probably due to the stent falling out and aggravating my pancreas. I was still having spasms, but my doctor went to South America on his Christmas vacation so I had to wait until he came back to find out what he thought about it. That opportunity never came.

 I'll never forget December 28th, 2010. That was one of the worst days of my life. The only other thing that tops that was the day my father passed away. I had the worst attack ever. I was in so much pain that I wished I would die. I thought I would die. My husband was making lunch for our daughters while I called out of work and tried to lay down. After a minute of laying down, I announced to my husband that I had to go to the ER. Since he was cooking, I opted to drive myself. I don't know how to explain the sequence of events that happened afterward. When I got to the ER, they recognized me. While checking me in, they took my vitals. I was crashing hard. They took me to a room immediately. Because of what was in my medical record, the doctor made me call my husband on speaker phone to have him confirm that he would pick me up if she gave me pain medications. I was crying, I looked at her and said "I don't think I'm leaving here." I called him, and he confirmed he would pick me up. She ordered medications. I was in so much pain, I was screaming and crying. I called my mom and told her what was happening. I asked her if she could make the three hour drive to come see me. She said she wasn't feeling well and would come as planned the next week. It was then that I told her I love her and that I didn't think I was going to survive this attack. I thanked her for everything she had done for me and then I slipped into a pancreatic coma. I don't remember much of anything after that. The next time I remember opening my eyes, and saw the nurse board in the ICU the date said "January 21st, 2011." I cried my eyes out. All the machines, the beeping... the tubes. Oh the tubes. They were every where, up my nose, catheters... if a tube could be placed... I had one. Fluid was backing up into my body. I had a blood transfusion, I had my abdomen drained several times. Countless procedures. I couldn't tell you everything. When my doctor found out I was in the hospital, whatever he did... what ever he ordered saved my life. I was told my pancreas enzymes were in the 4,000's. If you look it up you will see that they shouldn't  even be in the hundreds. I was told my triglycerides were 8,700. But this was just the beginning. I was devastated. I missed New Years, my daughters birthday. What did she think of me? What did my family think of me? I spent my birthday in the hospital. I scared my mother, my family, my children, my friends, everyone to death. I still wasn't out of trouble after that. They tried to let me go home in mid-February on home health care, with a PICC line, on 28-30 different medications for everything. Heart medication, kidney, liver, pancreas, triglyceride medication, pain medication, nausea medication, spasm medication. Being home didn't last long. I couldn't eat or drink anything. I couldn't even think about doing those things. I ended up right back in the hospital within a day or so. After another week or so, they tried to let me go home again on home health care again, and I came down with a fever. My home health nurse called my doctor. Ordered a CT scan and they found a pseudo cyst on my pancreas. Back in the hospital I went. They let me out the first week of March and sent me to a General Surgeon 35 miles from home. At my appointment, he took one look at me and admitted me back into the hospital for all of March. I couldn't take living in the hospital. He told me he would let me leave if I agreed to have a two feeding tubes, one in my stomach and one in my intestines. Somehow I went from "it's not that bad considering," in November, to "Chronic necrotizing pancreatitis" and "Really messed up," in March. Desperate to come home, I agreed to the tubes but then chickened out and ended up spending more time in the hospital. He found a blood clot in my arm from the PICC lines and then I finally agreed to let them placed the feeding tubes. 

The surgery failed. They got the one in my stomach but couldn't get the one in my intestines which is where the tube feeding formula needed to go. The stomach tube was to drain my stomach when fluid backed up. So, I attempted to come home on home health care again. I was able to stay home about a week. Admitted again, they placed the intestinal tube in and it was a success. The month of May started and they were able to get the intestinal tube in. The a feeding tubes are awful. Not only do they leave a permanent scar in the form of a second belly button but it literally feels like there is a knife going through your body. I lost so much weight. I was deteriorating. And not only that, but I ended up back in the hospital for weeks at a time in the next few months because the tube in my intestines would coil up into my stomach. When I would do the tube feeding, it would cause so much pain. On top of that, my pancreas would still spasm every day. July was the first month I didn't spend a full week in the hospital. It was on and off after that.

 My life had forever changed. I was too weak to do anything. My lungs expanding when I breathed would cause extreme pancreas pain. I would lay in bed and listen to my husband play with my children. I couldn't get up at all. I couldn't function. When I had the PICC lines, the IV nutrition bags took 12 hours to go through my body. When I switched to tube feeding, it took 14 hours of the day. My life was gone. My body kept me a prisoner. I had wished that I had died. All the pain, all the things I had to do to survive. Drain my stomach, put food in my intestines. Once the tube was in place, I had to get a pestle and mortar to grind all of my medications and shove them into my tube. Life was awful. Slowly, I got tired of crushing medications. They had done a new gastric emptying study and found my stomach was 85% paralyzed. But I forced them to remove my tubes anyway after I had ulcers from them. Between that and the coiling of the second one into my stomach, I couldn't take anymore. Thanks to all of this I have hypertriglyceridemia, my pancreas is so damaged that it's Chronic and still spasms, and my stomach doesn't work.

 I was referred to a pain management doctor that year and he refused to give me pain medication. He wanted me weaned off all medications. I gave up. After all that I had been through, they still thought I was just wanting pain medications. I stopped going to all doctors except the one that saved my life. He couldn't give me any pain medications because he didn't know what to do honestly. So I just lived with it. I would have pain attacks here and there. I learned that with chronic pancreatitis that your enzymes no longer need to be elevated to have an attack. I quit going to the ER and just dealt with it as it came on my own at home by not eating or drinking. I became a shell of a person. I tried to have a normal life. In November of 2012, I finally went back to work after being gone over two years. I am so lucky the benefits were great. It was a struggle. I was always tired. Always in pain. I eventually had to find a primary care doctor to refill my insulin. My primary care doctor did all she could. There were a few hospital stays in between. Each time I was admitted into the hospital, I was more embarrassed to tell my family. We tried pancreatic nerve blocks. They would only last two weeks and wouldn't take care of the pain. 

I've spent the last  few year or so just trying to fix the damage done to the rest of my body. The nose tubes deviated my septum. The cartilage in my hip had been worn down when I was learning how to walk again. So I had to have reconstructive hip surgery. That surgery failed because there was more damage than they could see on the MRI, he ended up shaving down a lot of bone, and amputating more than half of the frayed cartilage. I will eventually need a hip replacement but I am too young for it now. He may consider it in 15-20 years. Until then, My hip will be in pain. Water aerobics does help, but I have to do it nearly every day to see the benefit. I don't mind, it's pretty fun..... And the dental work..... I spent $5,000 trying to get the damaged fixed that was caused due to tubes down my throat, dry mouth and well... they don't brush your teeth in the hospital. I still need $7,000 of work. I hate smiling. I had to have two teeth pulled, thankfully in the back. I hate looking at my teeth. I have two belly buttons. I'm so scarred from PICC lines, gall bladder removal, procedures, even IV sticks have left scars. Scars.... everywhere. 

 Throughout all of this I feel my family has suffered the most. My husband has suffered strain. My children are afraid every time I go to a doctor appointment. No matter how much I've tried to hide it, they can see it. I had to talk myself through the day and 90% of the time, I would still fail to actually get up and do anything. I would go through the motions of life convincing myself I could do it: "I have to be up in one hour. I can do this. I have to get the kids." "I made it through 2 hours of work, 6 more to go." "I can make it to my daughters award ceremonies. It's only an hour." Minute by minute, day by day... just convincing myself that I could do it. 

If I had to go somewhere, I couldn't eat or drink before hand because it caused so much pain. Food would have me curled up in a ball in pain. I learned to breath shallow so my lungs wouldn't expand too much to cause pain. My husband learned my cues and facial expressions. When we would spend time with family, like say for a holiday meal, he could read my face when I needed to leave so I could get home. That half "I feel like I'm going to die soon," and half "I've hit my threshold for pain, I need to go home" look. It ruled my life. And left me exhausted constantly. Both mentally and physically. I was unable to do housework, just going to my job drained me. I would take any time that my manager would let me leave early if it wasn't too busy. I felt worthless. Heartbroken and just broken in general. 

Fast forward to 2014, in April I ended up in the hospital again with severe pain. My doctor suggested I try pain management again and sent me to the same place that told me I needed to be weened off the medications. I was apprehensive at first but ultimately agreed. It is the closest place to me. At my first appointment, I told the doctor that I only made the appointment on the advice of my primary doctor. I trusted her and I was doing as I was told. I told him I didn't want an pain pills so I wasn't sure what the point of it all would be. I hate the way they make me feel and only use them if I absolutely have no choice. In response, he told me he had gone back into my medical record and seen everything. Between the slow stomach, the hospitalizations, my primary care doctors notes..... he felt that narcotic medications in pill form wouldn't be enough. And wouldn't work correctly. I agreed, and thanked him for his time. He suggested an intrathecal pain pump. He showed it to me, let me hold it. He told me that it would change my life. My reaction immediately was "Isn't this what they give people that have cancer to help with the pain," and he explained it wasn't only for that. It can be used for chronic limp pain, in patients that were severely hurt in accidents, and all kinds of other scenarios. He asked me what I thought about it. I wasn't sure. I already wear an insulin pump and a continuous glucose monitor to check my blood sugar constantly. He gave me an information packet complete with a DVD and prescribed me Fentanyl patches. I followed up with him once a month for 3 or four months and we talked about it each time. After talking about it, he told me that either way I would need to be admitted into the hospital to do a 3 day trial. 

For the trial they give you an epidural and leave it in to see what happens and also to find the appropriate dose. One of the things that was important to me was that I don't want to feel the medication. That's one of the reasons why I don't take the pills. It's also the reason I don't drink alcohol. I hate that drunk loopy feeling. It makes me feel out of control, which is not a good thing for a control freak. He explained that because the medication is delivered into the spine, it won't ever enter my blood stream and I won't feel it at all. I can still drive, have a normal life and only at a small fraction of medication. "Normal," I thought? What's normal? Normal for me is pain. Always. Normal for me is feeling like crap, all day every day. Normal is staying awake in pain until I am so tired that my body will allow me to fall asleep. After considering his words, and several visits with him I realize that he's the only pain doctor that actually is trying to help me. He wasn't trying to just give me different drugs and guess which ones would be the best. He truly wanted something to work for me. I agreed to the trial. Just getting to that point is a process.... First a proposal to the insurance company has to be made for approval. He had to send them all my test results for my stomach to show that giving me oral medications would not be helpful. While he was in the process of doing that, I had to see a psychiatrist to make sure that I was mentally able to handle the device and potentially the disappointment if it didn't work. I also had to do a long psychiatric test to see if I have an mental disorders. All of them came back negative for anything and I was deemed an excellent candidate for the pain pump. (Surely being a control freak would count for something?! I guess not!) 

My next visit to my pain management doctor, he explained all the risks, how it's refilled, where it's placed and what to expect. It didn't seem so bad. Refilling it would be just like getting an IV but in the abdomen instead. I've been through worse. Risks were just like any other surgery except the risk of a spinal fluid leak. He said, he's only seen 2 patients that had this issue. As for where it's placed.... during the surgery he creates a pocket under the skin and he anchors it in that way. That concerned me. I googled pictures of what it looks like and it scared me a little bit. However, thanks to my stomach being all slow... my body stores all the fat from anything that I eat which makes me gain weight instead of lose weight so it probably wouldn't show. 

We set up the trial. On September 16th, I went into the hospital. They took me to surgery, put me under and placed the catheter. When I woke up in recovery, I was itchy to say the least. Apparently getting used to morphine takes about 24 hours. But I shocked. I thought he actually took out my pancreas. There was no pain. None! At all, nothing! My hip didn't even hurt. When I asked him how much morphine he was giving me, he said 1MG per 24 hours! That's it. Again I was shocked. Excited. I made it a point to breathe deeply. It was amazing. For 3 years I hadn't taken a normal breath. It was all shallow. If I had to yawn, it would cause a lot of pain too, sneezing hurt.... but I could tell that this would work. I was still on the fence though... a metal implant, that could potentially be seen through fitted clothing. The trial had to last three days so I had time to think while I was in the hospital. At least I thought I did... I was patient #3 for him with a spinal fluid leak. I can't tell you how horrible that headache was... I had to lay flat, otherwise it was so bad I would cry like a baby. My doctor called the hospital at night from his home to talk to the nurses to see how I was doing and if I needed anything. I needed to have a blood patch to fix the headache. He did all he could to make me comfortable until we decided what we would do. By the third day, I had spoken with family and friends. Sought advice. Googled for other patient experiences. I didn't find much (hence this blog) but I ultimately decided that breathing pain free was well worth the surgery. And hey.. maybe setting off metal detectors would be fun! And he would do the blood patch at the same time. 2 birds, 1 stone always works for me. 

He discussed the procedure with me. If you've seen one, you know its about the size of a hockey puck. To place it, they make a small incision vertical incision by your spine to route the catheter from the pump into the intrathecal space and about a 6 inch horizontal incision by your belly button where a pocket is made an the catheter is anchored. It is a pretty painful procedure and very long. You have to wear an abdominal binder for a while to hold things in place and until you get used to the weight of the pump. A representative from Medtronic came and sat with me while I was in pre-surgery. He answered my questions about the pump itself, gave me his card and personal phone number and told me to call it any time I had a questions, it didn't matter what time. He told me he would also be in the operating room getting it set up and programmed. The surgery is outpatient. So I was expecting to go home after the implant and blood patch. When I woke up, I felt some pain. Thankfully the blood patch worked and the headache was gone. They took me back to my hospital room, I was planning on calling my husband to come pick me up but my blood pressure dropped and they felt they need to keep me another day. So, I went home the next day. I struggled a bit with the pain.

 He did give me pain pills to help me while I was home, but they take too long to digest so I had to wait for the the first dose to work and figure out how long it helps the pain then make sure I took the other dose early enough so that I could control the pain. The first week was the hardest. Mainly because my first night home, I fell asleep sitting up. That caused another spinal fluid leak. (I had another blood patch later). It felt heavy inside. I felt like it was going to fall out of the incision. It was hard to stand up, it was hard to sit down. It was hard to lay down. Staples don't exactly feel the greatest either. But over all, he did an awesome job. The incision looked great, the scar would be minimal. 

Three days later, I went in for a wound check, and he saw that where he had placed the trial catheter looked infected so he gave me some antibiotics. It was irritated when I left the hospital but now it looked worse. He checked the staples and noticed that the incision in the front was red and swelling. He wanted to keep an eye on it so we set up weekly appointments. It took a long time for the incision to heal. I developed a rash right over the skin where the pump was placed. My skin was cracking and bleeding over and over again. Let's forget about that for a second here..... 


This is beginning to sound negative when it really isn't. I want to tell you that the pump gave me my life back. I could breathe without pain. I could eat anything I wanted at anytime. I could go out and eat dinner with my family and not feel like I had to run home so I can double over in pain. I didn't have to give the "I'm going to die face." I wasn't falling asleep on the couch from exhaustion by early evening. I danced with my children again. I did more in 2 months with them and for them than I had in the last 3 or four years. My hip felt better. My life felt better. I smiled more. I enjoyed my life more with it. What seemed like a treatment I would hate, turned into something I loved. I'm so thankful I did the trial. I'm so glad I found a doctor that actually cares and believed me when I said I hurt. He didn't think I just wanted pain killers. He believed me when the "numbers and scans" showed that everything was the same as it was before. It was scary to think about it. Now I can't imagine my life without it.......  

...... Back to the skin cracking and bleeding. I'm allergic to the metal. Cracking, bleeding, rash.... burning, pins and needles feeling and the itching. Oh goodness, I don't think I've ever clawed anything with my nails on purpose. But I did this time. The itching was so intense I just couldn't take it. This started about a week after the pump was placed. At first we thought it was contact dermatitis from the steri- strips. But it just kept getting worse  after they were removed and spreading. We tried to think outside the box. My doctor called other doctors to see if there was a way to treat the dermatitis. I talk to a friend of mine that makes implantable devices to see if he knew of anything that would could do. In the end, the only way to treat the allergy is to remove the allergen. With the way my skin was reacting, it put me at risk for infection and he didn't want to risk it with the diabetes. He set up an appointment to have it taken out. I had 2 appointments to have the dose lowered to introduce me back into the world of pain that I was living in slowly. The whole time, he had give me his personal cell phone number and we called, and sent text messages back and forth up until 2 hours before surgery to see if there was another solution. 

And actually, there is another solution. However, it wasn't something we could do right now. He talk to an engineer and apparently they will coat the pump with some kind of material that will keep the metal from being exposed to skin. They only do so many of these per year and you have to be on a list to get one. This is required by the FDA. Unfortunately, the pump that was taken out yesterday had to be thrown away because once it's out, it's no longer considered sterile. So I will have to get another one. Which means another surgery. He is hopeful that he can have me approved for one next year. He's making phone calls now to see if they filled their quota for the year or if there is one available. NOTE: This allergy is extremely, extremely rare. There is hope and a solution even for this. I waited three years in pain. Knowing there's a treatment that will work is comforting and worth the wait. So to make a long story even longer, here's my two cents: 

 Cent 1. If you are suffering from chronic pain, don't give up. Find the right health care team that you feel actually sees you as a person and not just another pay check, or another prescription to fill. I spent three years of my life in pain and that was no way to live. It hasn't been out a full 24 hours yet and already I miss being pain free. Get second opinions. Get third opinions, whatever it takes. Life is too short to be a slave to pain. 


 Cent 2. Don't over look a treatment option even if they appear drastic or scary. Read, read, read, read. This isn't self-diagnosing. It's research. I wish I had more stories to read about the pain pumps. Unfortunately, the down side to reading and researching patient experiences will show you more negative experiences than positive. Not too many people think to go put something out there when it's working for them. The ones that aren't happy with it or have a problem with it are easily found. That's why I put this out there. Hopefully someone will see this as positive and at least give it a try. 

The only option I have flat out turned down, is having part of my pancreas/stomach removed. The intrathecal pain pump is reversible. Removing organs... not so much. Be open minded and the trial will tell you everything you need to know immediately. Except an allergy, get tested for that first. ;) 

 So to the person googling Intrathecal Pain Management or pump I just want to say that I am so sorry that you are going down this road. It has to be awful if you've found yourself here in this situation that you're in. I understand and I know how hard it is to live with it, and to see it on the faces of your loved ones. If you have any questions what-so-ever about my experience, about the pump, about the allergy... feel free to leave a comment here. All of the comments on this blog have to be approved to be seen. So your comment will remain private. I was labelled as someone just seeking drugs, as someone that was brittle and didn't listen to my doctors when in reality, it was quite the opposite. Remember to always take care of yourself, and don't give up. It's worth it, you are worth it. Life is worth it.

1 comment:

Unknown said...

I must say I never knew you had that many health problems. If I only knew I would have been praying for you daily. I'm so sorry that you had to go through such pain. I'm very happy that you never gave up and sought out better treatment. I wish you nothing the best. Thanks for sharing this blog and I will be definately sharing it. HUGS.

 

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