|
Junior Member
|
|
Join Date: Jan 2014
Location: Williamsburg, Virginia, United States
Posts: 8
|
|
|
Junior Member
Join Date: Jan 2014
Location: Williamsburg, Virginia, United States
Posts: 8
|
Quote:
Originally Posted by lostmary
Hi all,
Hope this finds everyone doing well today. We just got out power back on. Been without heat, water, tv, internet for several days now. Good to be back with everyone
I'll start with my story for those that don't know me. I'm Mary and I've had rsd for about 4-5 years. I got my first scs over 2 years ago. I had the trial and after 3 days the surgical pain went down enough that I could get out of bed. I put shoes and socks on and went out. I had a cane to help me which was better then my walker. A month later I had the perm unit implanted. The recovery was really bad, and it took almost 4 wks before I wanted to get out of bed. I never really got the relief from the perm unit as I did the trial. I kept having the scs (stim) reset and I never had any luck with it. About a year later I noticed that the battery, which was placed in my butt, had started to turn around and it was hurting when I wanted to sit, etc. well the next dr. did an xray to see what he had to do, and he discovered the leads had pulled out and were somewhere else. So he replaced the complete unit moving the battery to the side. I knew something wasn't right, but as the dr. passes you over to the company rep after surgery, I didn't know for sure what was going on. I woke up one sunday nite, went to try to move, and discovered that I was soaked in pus which was pouring out of my side where the battery was. Long story short, ended up in ER, then surgery, then a nursing home. It was the worse experience in my life. Never again. In surgery, they had to remove the scs as the infection had gone up the leads to my spine. I don't think this would have happened if the dr. would continue to see you after surgery instead of passing you off to the comp. rep. who talkes over the scs side of things.
I swore I would never have another surgery and it took me over a year to decide that I really wanted to have my life back. I was on enough pain meds to knock out a horse, (of which I have 3 lol). I wanted my life back so bad that I started looking for things that I could do. I had been studing the pain pump for quite a while, doing research and talking to many pple who had one. Finally I decided to go for the trial.
It was the best thing I have ever done in my life.
The trial was 5 days in the hospital with an internal cath into the spinal fluid and an external pump. I woke up from surgery sleeping on my back. No pain from the surgical site. THey started me on Morphine, but it turned out I was allergic to it. THey were giving me zofran to stop me from throwing up, but guess what..I'm allergic to that also. (this is why the trial is done in the hosptial. they have to know that you are ok with the meds.). THey switched me to diluidad, which is more powerful the morphine, but less side effects and my life changed in that one day. the pain was almost gone. I could touch my feet and legs and walk without pain. even my butt was doing great. I didn't want the trial to end, but all good things must. It was 2 months before I could get in for the perm. THey kept me in the hospital for an overnighter to make sure I wouldn't get sick again. No problem. back a little sore from surgery, but I was up and walking without much pain. By day 3 I felt so good that I started ordering some scrubs as I'm going to go back to work as soon as I get the ok from the dr. The one thing I have found out about the pump is that you may have to search for a distance to find a dr that will do the pump. Why??? I don't know for sure but I have my theories. With the pump, you will be working with your surgeon/dr for the rest of your life. It is a commitment on your part and your drs. part. It's not put the unit in and leave, its monitor the pump, try different things in the pump so that you can get off the oral meds. I have horses and I want to ride again. WIth the scs I couldn't ride again, have to worry about the leads pulling out. ( of course they did anyway). with the pump, there are a few things I can't do. Bunge jumping. (darn it lol) and jumping out of planes. besides that I can do almost anything I want.
I know this is long, but I did want to explain how the pump works. You have a resivoiur that is implanted under your skin. Mine is to the right of the spine. to that is connected a cathater which goes into the spinal fluid in your spine. The dose of meds that you recieve is 1/300th of an oral dose. As this doesn't go thru the rest of your organs, it doesn't affect you like oral meds. I don't think thru a fog anymore. I can laugh at jokes because I really understand them again. Life is clear and brighter now. You can tell that I'm happy with it. I just wish I knew about it before and had done the extra that it took to find a dr. that would do it. None here would. They all hated it and said no no no. I found one in another state 3 hrs away, and it was well worth it to have my life back.
Any questions...I'll answer them Have a good evening
Hugs
Mary
 |
Hello to everyone! I'm sorry for all of your issues. I hate that there are many stories about pain and suffering though each one is different. This is my story.
I was dx'd in 1997 with MS after having many problems with symptoms from the time I was very young. I couldn't tell you what and when my first symptom was, but I can tell you that I believe that it all started with the mumps when I was 4 or 5 y/o. after that I can remember complaints of what I described as headaches behind my left eye when I was about 7 or 8 but after that I believe I had foot drop in high school and am undiagnosed case of optic neuritis when I was 18 which was dx'd at the time as a migraine when I went to the er. At the age of 19 and 20, I had problems with trigeminal neuralgia, and then at the age of 26,I started having another optic neuritis episode and numbness in my left arm and leg. I was dx'd with MS in 97. Years later after several relapses I started noticing what I called an aching in my legs that I I was given tramadol for and that worked for me for many years, but as my pain increased my dosages increased and by the last increase my neurologist decided to send me to a pain management Dr. I've always had a fear of becoming addicted to pain medications and I explained that to my new Dr who immediately told me about the pain pump and I was ready to get it put in immediately, but was told that I'd have to do the trial first so in the latter part of November I had the trial done where I had to go to the Dr's office at 7 am, which btw, is attached to the hospital and had the trial done and then transferred to the hospital where I stayed and was monitored by the nurses for the rest of the day and was sent home by early evening. That day I had the trial done and by the end, I knew that it was for me, because I had not been without pain like that for a very long time. The next week I went back to the Dr's office and he put the referral in for the surgeon who was to perform the surgery and waited for them to contact me. Once I got the call, they had an opening for the following day so I went in and told them that my only wish was to have my pain pump put in for Christmas. By this time it was already mid month and so he sent me to the front to see if he had anything avail prior to Christmas and by a miracle there was an opening for the 23rd of December, so I was scheduled. I went in to surgery the early morning of the 23rd and I got out of the hospital on the 24th and I was taken to my mother's house where I spent that evening and the next day with them recovering. The only problem I have had from the surgery is some weakness in my left leg along with some pain in my hip. The Dr's believe that it was just due to swelling at the site where the catheter was placed at the base of my spine and gave me steroids to help reduce the swelling. As of date, I believe that I've experienced a relapse of my MS since the surgery because I've had some other things that have crept up including some vision problems, ringing in my right ear and more weakness and sensation issues in my right leg this time. As for the pain, it increased after the surgery but I called my pain management Dr who, unlike the rest of you whom have had problems finding a Dr that would manage your medications after your surgery, mine is the same Dr that referred me to the surgeon who did the surgery, so that once the surgery was completed, I could go back to my original Dr and have him so all of my fills and manage the pump itself. Anyway, back to my story, I called my Dr and he got me in within a couple of days and he increased my medication by 20% and said that I should expect to start noticing something within a few days and several days later, I did notice that I could go longer between my methadone doses so that I can begin to start my withdrawal process from the methadone. Currently I'm on methadone, Lyrica, percocet, and now the morphine. My hopes are to be able to reduce all of that to only taking what I need to take to cover any brake pain that I may have. He told me that if I found that I needed another increase in several weeks to contact him again and he would get me back in and increase my dose. I'm currently on morphine in my pump and if things continue to go well, as stated earlier, I'll continue to withdraw from the methadone and then I can hopefully get back to my life! I'm disabled due to the MS, but at least i can enjoy what I was enjoying before this pain got to the point that I needed a pain pump. I'm a huge fan of riding motorcycles and I have a 2004 Harley Davidson sportster XL1200C which I can't wait to get back on and I am also a lover of horses and I enjoy riding for pleasure, so I'd love to be able to get a chance to go riding again as well. Btw, I'm glad to have finally found a group of people who also have or are considering to have the pain pump. I'm a member of several MS pages on Facebook and have yet to find someone who has a pain pump. It'll be nice to be able to share experiences with you all and to hear each of your stories as to how you all came to your decisions about having it done. Seems like my Dr from the ones I've read so far, it's the only one to have offered it as a first choice instead of offering the scs as a first option. I'm glad I chose the Dr that I did as well, because he is not on my insurances list of Dr's so I decided to go out of network in order to see him, so I'm glad I did! Seems to me that a lot of little things went right in order to lead me to this miracle! I truly believe that this is my miracle!
|
Surgery a week ago today
Hello Sissyt!
so hopefully we can get to the bottom of what's going on with your unit!
Linear Mode
