New to Board and in loads of pain!

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HeatherJM

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Cal Sun! How are ya feeling? This accident you speak of... were you driving, by any chance? ;) LOL

Off to Vancouver tomorrow for another CT scan and the epidural injection (hopefully it won't hurt horribly!) Wish me luck!! :)
 
Hi, and welcome to the board. If you have spinal cord compression, then I certainly sympathize with the pain you are having. If surgery is recommended and will be quite soon, perhaps the specialist will prescribe something stronger until then...maybe something like mscontin, duragesic patch, oxycontin...those might help. IF however, for any reason, he doesn't want to do surgery soon, ask about seeing a pain management doctor who may be able to help some. A good drug for nerve pain is methadone. It worked better for me than any pain med I tried.

Let us know what the surgeon says ... we'd like to help you.

Carol
 
Hi everybody! I'm new to this board, although I post on the MS Board lots. I have a herniated disc (L4-L5) and can't handle the pain any longer! I have an appt. with the neurosurgeon on Friday to talk about surgery (although my neurologist and GP both agree that the herniation is so severe and the pressure on the spinal cord is causing the worst pain I've ever experienced down my leg). I was wondering if anybody had any tips on pain management? I'm on percocet but have tried hydromorphone, demerol, etc. The percocet hardly does anything but make me tired! Also, those of you who have had a herniated disc surgically repaired, what was your experience like? I was told that I would be in the hospital for a week (approx) but I'm worried about post op and recovery time. Also the pain level afterworRAB. Thanks in advance! :)
 
Hi everybody! I would like to start off by saying thanks for all the responses and support. It's great to know that somebody else actually understanRAB the pain I'm in!

I saw the neurosurgeon on Friday, but the films from the CT scan at the other hospital hadn't arrived yet and all he had was the written copy that the neurologist had sent with the referral. So basically he has referred me for a epidural (this Friday) and another CT scan to see if there is any change from the first one. I'm going on month 5 and the pain is getting worse by the day so hopefully the epidural will offer some relief. Who here has had an epidural / nerve block? Was it as horrible as I'm imagining? Did it help relieve the pain? Any tips to keep in mind afterworRAB? Thanks in advance! :)
 
Hi everybody. I did it. I had the epidural steroid injection (nerve block) and if I ever say I'm going to do it again, shoot me, please! I have never experienced such pain in my life, and I've had a baby and surgeries... but this was excruciating! And, to top it all off, it didn't work! I think anyways. I'm assuming that it would have taken effect right away (I was nurab for a few hours and sore afterworRAB, but I just thought my back hurt because of the inection), but I'm still in pain! The same pain, all down my leg. Am I wrong in assuming that it should have worked right away? The doctor had said that if it worked it should work for 4 months (approximately). What now?! I can't stand this pain much longer and I can't get in to see the surgeon until the end of August!
 
Hi Heather,

Welcome to the Back Problems board.

I also have the 'double whammy' of MS corabined wth a herniated disc at L5 but, unlike yourself I haven't been offered much in the way of treatment. I am sure there are many here who can advise you about surgery better than I could, but I CAN advise you on the best position to lie in for pain relief.

If you lie on your back with enough cushions under your knees to keep your back flat (like you're in a chair that has been tipped back onto the floor) then this seems to release the pressure and will allow you some pain-free time.

I hope this helps.

L :wave:
 
IF an epidural is going to work, it doesn't always start working right away...it can take up to several days.
I think that it is not in your best interest to wait until the end of august. I would get in touch with my pcp and see if he can get you in somewhere sooner than that. You could still keep the other appt....that way you will have 2 opinions on which to base your decisions.

I sure hope we hear some good news from you soon....that you are at least getting some relief from the epidurals...I don't have much faith in them, and actually recommend against them, but that does not mean that now and then don't give a few people some relief. Lets hope yours does, while you wait to be seen.

Holding you in my thoughts,
Carol
 
Hi HeatherJM,
I had a 3 level Laminectomy with instrumentation and fusion on April 12th.
Now, almost 3 months later, I can tell you my back feels great!. Sure, I still get a little achy feeling in my back if I don't rest every 5-6 hours but I am still recouperating. My surgeon wants me to wear the brace as much as possible. Even when I sleep if I can take it. I think this helped me heal well and keeps you from twisting which can ruin the surgery.
I am having a different kind of pain to deal with and that is with my foot and leg. Seems a nerve was damaged in the S-1 area and has caused the very first stages of another type of nerve problem so my doctor has me on Neurontin for this type of nerve pain and it helps a great deal. This kind of medicine is one you have to work up to (I take 1800 mg a day, 600mg 3x a day) and when you no longer need it you must be weened off by the doctor.
I also still take regular pain meRAB 3-4x a day. I found that only hydrocodone (generic form of Vicodine which is easier to swallow because it is a smoother pill) is the only thing that really helps the back pain after surgery.
So, follow me here Heather...right now...I am great. Very glad I had the surgery! That pain from compression is gone! I can walk normal again. I go for physical therapy 3x a week to work on motion movements for my back, hips and legs. Therapy sessions also include hot packs and ultra sound massage and electroradial something (don't know name) for pain therapy. All this feels great and has been helping so much. The surgeon prescribed 3 months of this therapy. I have had 4 sessions so far and love it. One thing I will say about another response you had; don't use ice on anything! This nerve thing I still have going on requires heat and from what I understand ice can rapidly enhanse problems with nerve damage like bringing on RSD which is bad, so stay away from ice!

So as you can see I have no regrets about the surgery...now...but now I will tell you about right after the surgery.

You will have a lot of pain. You will need someone to help you for at least a month at home. Get a relative or friend (if you are lucky enough to have one to stay with you for a month). I was alone and this enhansed the pain. You will need help to get out of bed. To take meRAB. To prepare food. To wash yourself and your house. You need someone to talk to you when you are in pain and you are waiting for the pain meRAB to kick in. You need to give yourself time, months, to heal. Don't rush back to work. Wear your brace. Don't bend to put on socks. Don't get in a tub, you won't be able to get out without stretching what should not be stretched yet. If you are going to go thru this grueling surgery then do everything you are supposed to do to make it a success!

Yes, it is a long and painful surgery to have and most people will say...Oh, back surgery, I would never do it. But Heather, if you are living with so much pain now then isn't it going to be worth 2-3 months pain to be rid of it forever?

Even though I was in hell with pain by myself all these months, I can finally say I feel pretty good now. I am weening off the Vicodine (from 5-8 a day!) to about 3-4 a day. This also should be gradual or the pain will come back. Take your pain meRAB regularly not just when you feel pain or they won't work.
You will become a little dependant on them for a few weeks but you need to keep them in your system for them to work. Then a few months (2-3 like me) down the road you will start to take 1 less a day each week. This week I will only be taking 3 a day. Next week only 2 and so on. Meanwhile I continue to take a rest every few hours. At first I would only be able to sleep for an hour or two. After a few weeks of hardly any sleep I started to get maybe 4 hours at a time. Now I'm able to sleep around 5-6 hours before waking with a little discomfort. That's why I am awake now. I came online now until I can get tired again. I saw your post and just had to tell you what you can expect. I wish someone would have told me I needed help for the first month.

This surgery is no piece of cake. It is hard to take. You will have pain like you can't believe but then don't you have this now? When you have any surgery, even for a finger, it hurts like hell. But everyday you will get a little better. Each day is one day closer to being painfree, forever hopefully :)

Heather, I wish you luck with all my heart. Please don't become scared by my description of what it will be like. Instead be encouraged to be ready and strong to face this head on. It will be worth it in a few months. I am so happy I don't have that horrible pain anymore of my lower back feeling like it was rotting away. I am looking forward to maybe dancing or exercising or going for long hikes next year. I have a new back! I love my surgeon and physical therapist for helping me!

Please arrange for some help for the first month or else at least arrange for a visiting nurse for the first 2 weeks to change your dressings. Take your meRAB regularly and wear your brace. Realize you might not sleep much for a few weeks but this will get better as time goes by. Most of all, be brave. You need to do this for yourself. Otherwise you will have a lifetime of pain. Three months pain is better than a lifetime!

I will keep you in my prayers. Let us know how you are doing. You probably won't be able to go online for about a month but when you do please check back. We all wish you luck!

(Sorry for the length of this but I had to tell you all this now to give you courage and to know what you can expect.)

Mollybrown :angel:
 
Hi Heather,

Being that you will be in the hospital for a week I am assuming that you are not going in for a microdiscectomy like I did (I was admitted @ 2:30pm, had surgery @5:30pm, and was released @11PM - home in my own bead by midnight)

If you could tell us what procedure you are having maybe someone can give you a little rundown on what to expect.

Good luck

Mark
 
Hi.... Welcome to the boarRAB.....I had a dicectomy and laminectomy of the L5-S1 back on June 2.... I was only in the hospital a day and 1/2... went in early on Wednesday morning... stayed over night Wednesday night... went home on Thursday afternoon....My Neurosurgeon said my herniation was very severe as well, it was a 9mm herniation into the spinal canal, pressing on both the nerves.. I had extremely severe pain in my lower back.... buttocks... thigh ... all the way down my right leg into my toes..also had nurabness, tingling, crawling etc.... I had the surgery that morning.. was in surgery a 1 hr 30 min.... in recovery about 30 min...My pain was immediately gone.... they took me back to my room.. and immediately had me up going to the bathroom... had me on IV fluiRAB and pain meRAB.... I was up going to the restroom atleast 1 -2 times every hr...the next afternooon when my neurosurgeon released me, he put me on a walking regamine.... I was to walk twice a day atleast a block....then build it up slowly to 1 mile and 1/2 twice a day....I was told NOT to sit for very long at a time... because that puts alteast 40lbs of extra pressure on that disc.....I am now almost 2 months post op... but at about 3 weeks post op I started to experience pain in my lower back.... spasms in my back... pain in my legs.. especially my right leg.. some nurabness in a few spots down the side of my leg and foot..... and bad pain that shoots out the bottom of my foot and sometimes feels like it is shooting out my toes...also have slightly dimished reflexes in my right leg......Neurosurgeon says it is not at all uncommon for the disc to reherniate... or it could be scare tissue pressing on the nerves again... he put me on some meRAB and if it does not take care of the pain... he is ordering me another MRI to see what is causing my pain.... not telling you all this to scare you... just a little insight from someone who has been there....of what the possabilities are and what can happen...Good Luck... Hope you get our pain under control...

April

2 months post OP Discectomy/Laminectomy L5-S1
Slight Herniation L4-L5
 
Heather,

I would exhaust ALL options before surgery. Also, as for the injection, if your doctor is honest with you, they are only a step that they have to take in the insurance game. They give the shot in hopes that the inflammation will go away. Inflammation causes pain. If the problem was just that something was irritated from an injury it might have healed on it's own. If not, then the shot is only a short term fix.

There is an on line publication called, The Burton Report, that explain the shots and why you should not have them done.

The pain can be unbearable. I did the shots in my shoulder before I knew how bad they were. I ended up with surgery to remove a bone spur that was cutting my rotator cuff. It grew back and is doing it again but no more surgery for me. I adapt.

I have SI dysfunction. For the longest time they wanted to put me on narcotics. I refused the shots and the narcotics. I had PT, did Yoga, stretches, walking, ice, heat, anti-inflammatories, muscle relaxers and Advil. I ended up doing Prolotherapy, which worked. Meantime I developed synovial cysts in the joints which pressed on my sciatic nerve on the right side. And, on top of that, the back doc hit a nerve with the needle when he did the Prolotherapy. The Prolotherapy worked though as my ligaments are like new. This is the first time in years and years that I have stayed in alignment. Had I not done it, my pelvis would always be out and causing pain. I went to an Osteopath for years for adjustments. I tried the belt, you name it. Nada.

This last week I wanted to go out dancing. I took three Ultraset, one Soma, and one Bextra. No pain. Ultraset is not a narcotic.

I take Bextra, daily. I was taking Neurontin but it made me into a space cadet and I needed to have my wits about me. I take 20 mg Bextra for the arthritis in my L4.

I was prescribed six Ultraset, four times a day. I only take two a day, about noon.

I figured out that stress was aggravating my SI (who knows why). I started taking two 1mg Xanax at noon along with the Bextra and I am good to go all day without any pain.

I was offered the Fentynal patch but turned it down. I would have had to take Miralax with it.

It has been trial and error for over a year now. I think that I have honed it down to the Xanax and Bextra. Xanax is easy to get from the doc, but very addictive. The Bextra is harder as you have to prove that Celebrex and Vioxx didn't work. I now have a lifetime approval.

I have made it this far without narcotics. Well, Xanax is a narcotic, but not a pain killer.

Exhaust all of your avenues before you look at getting cut on. From all of the research that I have done, once you let them cut, you have problems forever.

There are alternatives.

Have you had an MRI? EMG? X-Ray? Seen a Neurologist? My husband has a problem with his neck. Instead of an ortho we picked a Neurologist as they work with nerves and orthos work with bones. The bones don't hurt, the nerves conduct the pain. The bones might cause the inflammation to the nerves, but it is ultimately the nerves that are in pain.

Before any surgery, make sure that you know exactly what is going to happen, what they want the outcome to be, and if it is absolutley neccessary.

As for pain, try to find the most comfortable positons and ways of doing things. I sleep with a special pillow between my legs. I sit up straight. I take long walks and do lots of stretches. I alternate between ice and heat. And, I paid the cash for the Prolotherapy and even though he hit a nerve, it will heal and my ligaments are in great shape, which in turn helps me with the arthritis as the spine is no longer wobbley.

Think of your core muscles the same way as you think of your house foundation. If your foundation is cracked, then your walls will be all out of sync. You have to work on your core muscles in your abs in order to support your back. This is why you take the anti-inflammatories and something for pain, so that you can work on building up your core muscles so that they can do the work for you.

Did you have the injection where they guide the needle with a flourascope? That is really the only way to get it into the right spot. I would have also asked for Versid when they did it. But then, I would not have done it in the first place. Now you know.

If I were you I would set up an appointment with an Osteopath and have him check your pelvis and see if it is stable and level. If it is not it can cause a lot of pain. It is easily fixed.
 
Hi! Thanks for the welcome! Also thanks for the tip on sleeping... pain free time is rare these days and I'll try anything! :)

Mark, I don't know for sure what surgery it is, but will find out tomorrow. My GP had said the time frame but not the type of surgery. Once I know more I will definitley post it!

Thanks!
 
I'm not sure what injections you're thinking about having, but please say no if it's with Botox!!! I had those injections, and lived through hell for it!!
I wouldn't wish that on my worst enemy, and am telling everyone I know that's considering it, to consider something else PLEASE!!!!
I don't mean to scare you, only educate and warn you!! So, if your dr's planning on using Botox, come back and ask me any questions you have, or do some research on your own, and you'll see exactly why I'm saying NO DON'T!!! Take care!!
 
One of the reasons that epidurals, myelograms, repeat back surgeries is a possible risk for arachnoiditis. Patient stories about how they got arachnoiditis is having an epidural with Depo Medrol. Research that term to be familiar and how to avoid it happening.
 
Okay, I had not read your origninal post when I reponded to the last one. Did you read your MRI results? Do you have them? If the discs are severe and putting pressure on your spinal cord then they should have set up surgery right away. You should ask to see a copy of the report. They need to relieve the pressure right away. You can end up with permanant damage if they don't remedy it ASAP.

The L4 and L5 are right in line with the SI. Can you walk? Do you lose control of your bladder? The spinal cord is nothing to mess around with. I am surprised that they just went in and did an injection. Granted, they thought it was best to relieve the inflammation.

When I went in for my SI the demoral didn't touch the pain. I thought that I was going to have to be fused. I could not imagine a life of not being able to dance and not move my pelvis. What kind of surgery are they looking at for you? If the disk is compressed/herniated, can't they go in and remove what is pressing on the nerve?

I don't envy you. I am putting off surgery as long as I can, maybe forever.

My pharmacist told me to ask the doctor for *quality of life*. That is when he prescribed the Fentynal patch which I didn't buy.

If only they could just fix us and not put us on narcotics.
 
HeatherJM said:
Hi! Thanks for the welcome! Also thanks for the tip on sleeping... pain free time is rare these days and I'll try anything! :)

hi heather,

i have quite a few lurabar problems.as far as sleeping is concerned,what works for me is laying on my back w/pillows under my legs so my knees are bent a little.laying on my side causes spasms galore.pain can stop you from sleeping regardless of how tired you are so for me,when the meRAB didnt help much i would take a very hot bath followed by ice (thank god for ice packs) and then quickly try to get to sleep while enjoying the few moments of relief.

if you are not sleeping well on a regular basis it can definitely enhance pain perception.maybe your doc could rx something like arabien.some people have luck using melatonin which you can buy at most pharmacies or vitamin places.

hope surgery brings you the relief you are looking for ....scotty
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OUT2LUNCH--Hi!

Can you explain to me what a whiplash, grade 2 disorder is? I'm interested because since I had an accident, my health has declined bit by bit to the point where I am no longer able to work. I am amazed that my docs don't fit the incident with all my symptoms. I would love to hear your story.
 
An MRI showed that I had arthritis in my lurabar spine and degenerative disk disease. I experienced pain when sitting. After several months I learned that this is ischial bursitis. It started in 3-08 & continues to present. The bursitis was not diagnosed until 9-08 even though I had been going to a pain doctor since 6-08. I kept telling her that I could not sit down. I pointed in the area of my sacroiliac joint. She diagnosed me w/ sacroiliac joint problems & gave me an injection in my L joint. What I REALLY had was referred pain from the ischial bursitis! The injection did do any good.
Fortunately, the MRI showed that none of the nerves were pinched even though I had herniated disks.
I was in bed quite a lot from 6-08 for several months. As a result I developed trocanteric bursitis on both sides from lying in bed so much.
The second pain doctor did 2 epidurals, a nerve block for L-4, 5 and S-1, & neurotomies for these nerves. I have constant pain. It is livable, but the ischial bursitis is worse than the back pain.
Both pain doctors had me on several different narcotics which did not help.
 
Hi Heather! I regret that I've been away...tell ya about that later.

So sorry that you had such a horrifically painful epidural experience. On thi Board, there are posts about epidurals and the best, most comfortable, procedure is described under the post headed, "Epidurals, to do or not to do." See meraber Delilah1963's description of her procedure. The timeframe is around 3/31/04. Also, she explains post pain in "Cervical Epidural Questions back on 3/31/04 too. I am unsure if the post pain for the cervical area would differ for the lurabar area. Anyway, Delilah had the cervical epidurals and what helped is the procedure was performed by an anesthesiologist. How are you doing so far?

I've been getting treatment so that's why been away. Missed ya a lot! :D
 
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