|
|
 |
Reply
| | | From: lmn4881 (Original Message) | Sent: 6/24/2008 8:38 PM |
hello everyone, I just got back from my neurologist/PM appointment. He has ordered a full MRI of my spine and added Lyrica and Dilaudid to my medications. I have to go and get an epidural and then a nerve block the following week. Has anyone had these medicines or proceedures? What can I expect? Any way to prevent weight gain with the Lyrica? I'm so scared and depressed. I'm not sure what to do. |
|
 First
Previous
2-10 of 10
Next
Last
|
|
Reply
| |
Hi Imn4881, I can tell you about my experiance with epidurals. I have upper body RSD and the Upper eppidurals help me an unmeasurable amount, I have only had two in the last year because that was all I needed. My last one was Jan 2 this year and I am feeling like its time. The upper eppidurals that I get are completely painless because they put me to sleep for a few minutes and when I wake up I feel fine with no pain, for me the first couple of days I feel a little like a slight upset stomach but it is very slight....then I feel like a new man....I am going to get another right after the 4th of July...thats 6 months! An eppidural is a kind of a nerve block so I am not sure what you meant by a nerve block...what kind? I have had several Ganglion Stellate Blocks and they all worked good and were done right in the Drs office,but I dont recomend getting those with out being x ray guided, thats the only way my new Dr will do them and his are better and longer lasting....I think its because he dosent miss like the Dr that did them in his office. I found out later that getting those kind of blocks in the Drs office is very reckless of the DR. So, dont worry, its a piece of cake that should help a lot if you get the results I get! Franklin |
|
Reply
| |
My experience with epidural injections was the exact opposite of what was just posted by franknberrye. Going into the epidural, I was totally happy thinking that it would be a simple cut and dry outpatiend procedure and that it would basically be like "magic" and make the pain go away.
Both of them I had done were outpatient procedures at a surgery center, where they gave me sedation / pain meds via an IV, but I was barely awake while getting the injections. They used an Xray machine while I laid on the table.
The first time, it was pretty fast but I remember constantly being in more and more pain until it was over when they did the injection and the nurse being surprised that the pain meds via the IV in my hand weren't enough.
The outcome of the first epidural was no pain relief whatsoever. They did the injection directly into the effected area in my back and basically my doctor attributed the injection not working because he did it right into the area that was already inflamed. Basically I walked around with a softball feeling in my back for about 2 weeks. My pain got worse, like I said and I experienced no relief.
The 2nd injection about a month or 6 weeks after the 1st one was going to be "different". This time instead of injecting right into the affected area, my doctor was going to do what he "normally" did and run a catheter from my lower back up into the affected area, using the xray machine etc.
The time came for the procedure and I happened to be prepp'd and given my IV right next to the room for the procedure, and I got to hear the guy that was in there before me screaming his head off in pain. This made me really want to run out the door thinking "oh boy this is going to hurt 1000 times worse than the last one". So, go time came and I went and laid on the table and was given some sedation meds and pain meds as well. Basically, to make a long story short, the next 45 minutes or so was me screaming the entire time on the table because my doctor couldn't seem to feed the catheter up my back and the entire time the nurse kept giving me more and more and more pain meds in the IV in my hand. I mean at one point I felt the cathetor coming out of the my right side of my back (way from from the spine!). After 40 minutes of me screaming in pain my doctor decided to go like 2 vertabrae away from the affected area and do the injection. He succeeded in doing the injection but little did I know what i was in store for.
Let me put it lightly by saying that I woke up the next morning basically feeling like someone took a large knife and scraped the heck out of my lower back as well as stabbed me multiple times in it, which is almost esentially what they did. The area where they tried to insert the catheter and run it up my back hurt so bad I could barely sit up for about 2-3 days without massive pain.
Again, I had the softball effect into the area where I had the injection too. The doctors words were "you have the most different anatomy than anyone I've ever seen in my life". (appearantly what he had told my stepmother about a different procedure he failed at doing with her 3 or 4 years prior.).
So in closing, if I had the choice of getting one again, I'd be cautious but probably go for it, because if it does work, the positives outweigh the negatives by miles, but don't get your hopes up thinking you'll be cured. Just remember that everyone is different, and we all respond differently to treatments etc.
On top of that, I'm type 1 insulin dependent diabetic, so I had to deal with messed up blood sugar from the epidural injections each time for about 4-5 days or so afterward becasue the stuff they use to inject is very syrupy/sugary substance, just in case you may be type 1/2 diabetic. At any rate I wish ya good luck gettion one of these things. Boy, I'd still give anything for one of those things fto work like they say for 6 months!!!!
Good luck,
~Phil |
|
Reply
| |
Hi there. I've actually had everything that you're on/going through. I've been on lyrica, I currently take dilaudid and I also have as you have read from my posting yesterday probably, 2 epidurals.
I personally started lyrica and cymbalta at the same time, and because of this, I didn't know which one was working, until after about 6 months afterwards when I was able to drop the lyrica like a bad habit....instantly with no side effects. However you may/may not know that cymbalta isn't the same way. I also have to remind you that what doesn't work for myself or someone else doesn't mean it shouldn't work for you. We're all different, we all react differently to different treatments etc.
I would urge you not to be scared but to keep an open mind on what you are going through soon with the medication changes and the epidural procedure. These are things that are an attempt at making your situation better, not to hurt you.
I suggest as I do, keep a detailed pain journal or log of your medications that you take daily, how much, what kind, and how you feel etc etc. as it will help note any changes in your body/habits, or any potential side effects are much more clear when everything is documented.
As far as dilaudid, I take that now. I actually started on fentynal patches when I first contracted the RSD/CRPS that I deal with now and was taken up to such a high dosage on those and percocet together that the dosages weren't working anymore. I ended up having to get off of them for a while and afterwards I switched pain doctors and actually started on narcotics again. I use oxycontin as a baseline medication, meaning I take generally the same amount of medication a few times /day and I use the dilaudid/Ibuprofen and if needed I'll switch it up with percocet for my break through pain.
For me, the oxycontin is great for longer periods of pain relief, as it takes too long and isn't quick enough when I have break through pain, which I actually seem to have a lot of for many different reasons. That's why I needed to get to the percocet/dilaudid. Yes, over time I slowly build up more and more resistance/tolerance to the narcotics, but it's something that I tightly control/keep track of so I can manage to get the best results from taking the medication/narcotics. I don't think there's really any other way to do it other than this because I sure don't like the side effects or the "dopeyness" that comes along with them at times.
I wish you good luck with your epidural procedure, and we're here for you! Believe me, I read here much more than I post...but knowing that I'm not alone and that people are going / gone through similar things than myself makes it much more easier to deal with and except.
Take care, and have a great day!
~Phil |
|
Reply
| |
Hi Phil, I was completely under when I was given the uppidurals, both times I woke up in revovery. Besides having RSD in both arm,hands and shoulders I have an advanced stage of degenerative disc disease. The upper eppidurals I recieved were higher up in my spine then a block that was done a few years ago that was right at the sympathetic nerve between t7 & t8, that block was not as successful as the last two I had in the last year. The last two were done between C7&C8 were specifically for the pain in my upper spine for the pain from having a spinal disc disease causing my disc's to deterioiate...feel like someone hit me in the middle of the back with a big piece of pipe...right between my shoulders. Even tho they were not for the RSD the help a lot with the burning in my arms, the Dr explained that he put in a lot of medicine and it ran down my spinal cord and made its way to the sympathetic nerve also calming my arms as well as stopping the pain in my spine...Im a 55 year old car wreck with problems from one end to the other. There could be many reasons for us having different out comes, different procedures,different medicine,different Dr's.....who knows. Not every one is going to have the same experiance and its a good thing for us to post our differences to give others a wider view. Of the two uppidurals I have had in the last year were done by different Drs as my first pain specialist was killed in a balooning accident before he could do the second one. Another Dr from the same Pain Clinic In Ft Collins Colorado did my second eppidural Jan 2 this year, the first one lasted about 6 weeks, this last one lasted 6 months...go figure! What ever these two Drs used for medicine in the eppidurals can only be used every 4 months, some of the other patients of this clinic that I have talked to have had the same experiance Ive had as to how long they last...some only a month or two and some as long as a year. We are all different and are going to have different outcomes and that is the beauty of our group, we get to see how others react to different medicines and procedures. Thank you for posting Phil and being an active member of our group! Franklin |
|
Reply
| | | From: lmn4881 | Sent: 6/27/2008 7:33 PM |
They aren't planning on putting me out for the epidurals. He said he was going to numbthe site ( which the nurse said burns) wait a few minutes and then do the epidural with the fluroscope. They are doing it mid spine i was told and the second one is called a selective nerve root block at L5-S1 the sheet says. I'm not sure the difference. I hope that my experience isn't like yours. i don't think I could take it! The first appointment says - Lumbar epidural / steroid injection. Hopefully all goes well. Keep your fingers crossed for me! |
|
Reply
| | | From: lmn4881 | Sent: 6/27/2008 7:34 PM |
The two appointments on my sheet are listed as this: Lumbar epidural/steroid injection Slelctive nerve root block L5-S1 |
|
Reply
| |
Wow, Franknberrie, you've really been through it. I've actually had my trauma from my car accident as well as my compression fractures right in the T-6 through T-9 area. Not only do I feel and know that my back never decompresses taking the load off of some of the nerves naturally, but in the car wreck I had the seat handle pushing in my back for over an hour plus right in the same thoracic area. So when the pain came back and comes back it always felt like I had the seat handle in my back again, but now since it's become chronic I can't tell it's the seat handle anymore because the referred pain is so brutal between T6-T8 and 9 just right of that area as well as to the left of my right shoulder blade.
I'm glad we both posted our stories too. You definitely have it a little bit rougher then myself it seems with pain/disc degeneration. I just wish there was some sort of surgical procedure I could do to have this fixed and get on with my life. I'm more freaked out over having the RSD go into my right arm more particularily my wrist/into the hand because my major in college is animation/illustration. I'm taking gen. education courses at a community college until I build up enough to transfer to a 4 year college I've got picked out that is one of a kind with this program without being an art academy, or a for profit school. Going from drawing almost daily 2 months ago to barely being able to take notes/do homework and type is frustrating.
Anyway, as when everyone says "oh my god you poor thing" when I tell them about my situation and pain, I always remark with "well everyone has go their own hell and their own problems." We've just got them a little more "in your face" and direct I guess...
Take care yourself! I look forward to hearing more about anything you do as well as what works for you and everyone else too. Great to chat with you and everyone else about these epidurals! I don't think they are all bad, but I walked in thinking it would be "the cure" and now after 2 of them and alot of pain later, I'm much more skeptical of everything....
Have a great day to everyone that reads this!
~Phil |
|
Reply
| |
Hi Phillip, Even tho I have had good luck with the upper eppidurals I was still scared to death each time because of my first experiance with a nerve block right at the base of the sympathetic nerve between T7&T8, this was a block intended to help with the burning in my arms....and it did, but! The after errects were not so pleasant and my Dr never did another one of those.....it turned the skin on the back of my left shoulder on fire, I couldnt wear a shirt of even touch the area....it did finally quit after about a month and the nerve block lasted about 2 months and then the RSD came back with a vengenge. This up comming upper eppidural has me scares again as I had another sever problem in late Feburary this year. I was walking up the stairs at home, I hyperextended my right knee and it swelled up pretty big,went to the doc and he put me on bed rest and an ice pack around my knee....well once again my luck went to hell in a hand bag quickly as the injured knee blocked the blood flow causing my leg to fill up with blood clots, the pain got so bad I went to the emergency room not really knowing what was going on. Some of the clots broke loose and went into both lungs..a double pulmonary embolism! I damn near died Feburary the 25, the put me in intensive care,put a shunt into my upper right arm with 3 hoses runnin into it, an IV,some kind of liquid blood thinner and a morphine drip, they used the forth hose to pull blood samples every 4 hours. Now someone with out RSD would have had several holes poked in their arms several times a day, I only had one dig one for the next two weeks. Now I am on Cumiden for the rest of my life(a blood thinner) and in order to get another eppidural I have to do what is called "bridging therapy" I have to give myself shots in the stomach before and after the eppidural for a few days each way and I am just sick with fear as I hate needles so badly! I fear this is the time, the one that breaks the camels back, the 21st time in my life under sedation! I fear I may not wake up this time. I have had 7 nerve surgerys on both arms,some of them were repeats, I had both femurs broken in an accident that also put a clot in my lung 34 years ago, the right femur had to be pinned, had a tape worm in my appendex that almost killed me, a heital hernia, a broken left ankle, and last year in January pnumonia among some of the other problems I have had in my life. It amazes me how much a human body can take, Im gonna be 55 in August,my how time flies.....just 8 years ago I was water sking,hiking the Colorado Rockies where I live, mountain biking, and I still was playing at Pro Raquette ball tournements then in August 2nd of 2000 the carpal tunnel surgery on my left hand started the RSD. God says in the bible that he will not put any more on a person that he can handle....well he must think I am a real tough guy or his back is turned on me! Franklin (Franknberrie)<my kids called me that when they were little! Now my 6 grandchildren do the same only ad grandpa to it! |
|
Reply
| | | From: ladojo | Sent: 6/29/2008 4:28 AM |
Hey all! Wow... The experience Frank and Phil speak of is so different from what I have experienced the past three years that I have been fighting this dreadful RSD Monster. I am female, sixty plus, and until about three years ago... was in great physical condition. My job was QC Inspector, plus I live in the middle of nine acres... alone, and loved all the things I did to take care of myself and anything to do with outside work.
My rsd started after I fell at work breaking my right hand. From the get go... My pain was not in the area of the break and where the other chip bone was. I kept complaining with my wrist and elbow. My skin was so sensitive. I felt like I had fire inside my arm and hand. I suffered so much pain... went through week after week of pt and at different times had stelate ganglion shots. Some helped for a few hours to a few days. I was sedated each time until the last two. I never felt any kind of relaxation, only the pain of having needles poked
in my arm to receive the medicine(sedation). The needle for the pain block didn't cause any pain. So last couple of times I
ask the dr. could I have the nerve blocks with out sedation...
I could tell little to no difference. What I really want to talk about right now is how I am feeling for the past several weeks.
I ran across an article somewhere, maybe first heard about
it on TV. It was about taking large doses of vitamin D. I started taking a thousand units of vitamin D a day... after a
week, I went from an eight and up level of pain, to a four and below. My dr. is now slowly taking me off lyrica... But! I am
starting to feel more of the burning pain in the complete right
side of my body. I have a problem with my body jerking backwards at unexpected times... I don't, or have never fallen
but to people around me, it looks like that. I have also had to
stop driving. I do drive to the store, about five miles away, and back, but even that is not a good experience. If I can watch the middle line in the road, (like keeping the marker wheel on a mower at the grass line) I can do that pretty well
just a few miles. If I listen to the radio, or think about anything
that I take my eye off the road for just a few seconds, I will be
across the road, or heading for the ditch. Don't know if that
sounds familiar to anyone, but the Dr. seems to thing that is
also a side affect from Lyrica. It's wonderful since I starting taking vitamin D to get a break in the the deep pain... Now I want my independence back.
I am the youngest girl of eleven children, and my sisters that
range from seventy two to seventy nine years of age, drive
from Illinois to Indiana, almost two hundred miles one way to
take me back home for visits. Also come here to help me do
some of the work I have problems with. Since taking one less Lyrica a day, I have also started taking off some of the weight gain Lyrica caused.
I just pray that I can soon stop taking so much medication.
At least for now it's one day... one medicine at a time, and lots of praying for God to give us a miracle, actually another one. I feel like hearing about, and now my daily vitamin D intake is a miracle. That is what a difference it have made in my life.
Ok, Good luck to everyone in which ever way your dr. and the
medicine you have to take... takes you! Just keep praying,
trusting and believing in what you are doing. God makes a
difference... I know in my life he has!
One more little tidbit of information... I had to take early retirement a year ago, so I have time now to take better care
of myself, less stress... but, still fighting wc for some kind of
settlement. Thanks for taking time to hear about some things
that work/don't work for me.
God bless all of us!
ladonna |
|
|
First
Previous
2-10 of 10
Next
Last
|
|
|
Free Forum Hosting
Important Announcement
Return to RSD Questions