Update on my nerve pain

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heyme2

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Okay, so it has gotten alot worse and me and my pain killers got to know each other on first second and third names.......I saw my doctor yesterday who was very concerned about the amount of pain and burning in my right leg. He took xrays and did a CT scan to rule out the chance of whether or not my hardware was pressing on any of it, thank God it wasn't, but he is worried about a blood clot due to how horrible the pain is, were talking a 17 on a scale of 1-17 one being the least.......he ordered an MRI and Ultrasound to ensure there is no clot and the MRI to ensure that there is not a disc pressing anywhere on the nerves, but I just don't see that causing so much pain in different ways in different places.......it is so unbearable.

I am finally in my brace which makes walking a little more stable, if I did not have to endure the burning in my foot and calf now, I feel I'd be in such a great position for recovery, when I asked him if none of this was the cause then what could it be, he said it could be the root nerves settling into new positions that they have been out of for 2 years, when asking him if it would heal, he said, and I am not sure if he meant this as joke or seriously because his answer threw me off and I freaked out.....his answer was "a little" What do you mean a little, I can not survive with a little of this pain, it will kill me, I am losing the ability to walk due to the pain and unresponsiveness of my leg and my ankle, and now my thigh is beginning to show symptoms......

All I can say is that he put me on the same pain killers, muscle relaxors and Neurontin, which when I asked him if it caused weight gain he said no, and yet the side effects say it does.........I altready take topamax, and asked him to up the dose, why could he just not take that up higher....I don't get it, how about an explanation?

Anyway, I hope some of you are doing better or finding relief......I really need to know that this was going to get better, I feel so alone and scared....I just hate the pain and my tolerance is going down so fast........

I pray to God every chance I get to help me find the strength to deal with this, to protect my husband who is at war and to help me heal.............
 
So update to my own update ;) My insurance company (being military and all) was dragging their feet to authorize the ultrasound needed to test for the blood clot and the MRI, so I called my patient advocate who told me to go to the ER, the ER at the hospital where I was operated on, in the middle of the night. I arrived at 3:30am, was put in a room immediately (Friday night) they did the ultrasound immediately, but had to wait for the MRI tech to become available. I have never been in an MRI charaber for 2 hours but it was horrible, even being drugged to get me in there. My doctor was on call, so he arrived around 9 am and said that there is no blood clot, no disc protrusion.....so back to square one......why do I hurt so bad. The drugs are not really helping, jut keeping me from screaming 24/7, just 6 hours of the day instead. Now he wants to do an EMG (nerve study) I have had this before just to determine nerve damage, but what is he looking for? I'm perplexed and once again wondering how much longer it will take to have it approved. I am 6 week post op, I should be in better shape then this right? I cry all the time, I wrap my foot in a cold cotton tee shirt of my husbanRAB and then a quilted pillow sham just to get some relief from the burning......but I'm so tired and I can't eat from all the pain killers, food makes me sick.......I am quickly losing it.......jumping at everyone, no patience, my thinking seems off......my husband, who is 7000 miles away in a war zone seemed to take the brunt of it yesterday and I just do not understand why I can't get better......

Any advise?
 
Hello! I'm new to these boarRAB too and can completely sympathize with your feelings of losing it and being jumpy. My poor kiRAB, 4 and 1, probably think I'm the meanest mom. I am waiting to find out if I'll be having surgery, which is very stressful, as you know.

I wish I knew the answers, because I would use them myself. My husband is wonderful, but really doesn't understand because he's never been in this kind of pain. My children ask me daily how much pain I'm in, that's hard to bear at their young ages.

I too have burning, nurabness, and pain, however in my left leg caused by 2 large herniated disks. The pain has gotten worse again now that my 3rd epidural has worn off.

I too cry all of the time. I haven't really found anyone around me (frienRAB or family) that understand. I feel alone and depressed. At least I have found these boarRAB! They are a GoRABent. I wish I had found these 8 months ago when this all started!
 
Heyme2, Wow I feel so bad for you. I just want to give you a hug. I am almost 6 weeks post-op too. I also have leg and ankle pain, and am considering nerve meRAB. I guess the topomax hasn't worked for you. Hopefully someone on here will have the answers you need. I know you must be under a lot of additional stress with your husband deployed. You both will be in my prayers........................Debbie
 
heyme2
I don't think I will be able to help you with your problem since I am not completely done with my surgery. I am having the 360 procedure done on the L5-S1 and they have done the procedure ALIF were they go in through the abdomen and put in the cage but I got a wound infection so they have had to delay doing the rest which is the PLIF were they go through the back and put in the roRAB and screws. I will tell you that I have started having terrible nerve pain in my right leg and lower back and nothing seems to be helping it either. I take Lyrica for nerve pain although I asked my PA at the neurosurgeon's office about Topomax and she said that wouldn't be what I needed but Lyrica makes me gain weight and it really doesn't take care of the pain.
I hope you can find answers to your problem. There are some real nice people here with a lot of knowledge and I am sure someone can help. I want to wish you the best and my prayers are with you. Also I want to let you know how grateful I am to your husband for the service he is doing for our country. I know how hard it is to have them away because my husband was in Vietnam so please pass on the thank you to your husband.

Linda
 
HI,
I'm so sorry your hurting so bad, I do know how you feel since I had and still have that nerve pain. I have permanent nerve damage and I want to assure you that you can get the right mixture of meRAB that will help. I can't work full time anymore but you are way far away form even thinking of any permamnent damage. It can take up to 18 months for those nerves to heal. I took a very high dose of neurontin 2700 mgs a day! youcan take up to 3200mg a day, but you have to follow your dr's orders on that one. I also took flexiril 10 mg 3x a day, and lortab 10/500 every 6-8 hrs. The nerve meRAB are what you wnat to concentrate on, neurontin, lyrica, topomax. they take time to find the right dosage for YOU. every one responRAB to these different. I'm sorry I dont' have nay fast acting info for you.

But you need to let that doc of your know that you can't take that pain and he neeRAB to start increasing doasages or changing meRAB or something besides tests with now. At least medicate the nerve pain until you find the cause of it. I do know how bad it is to live with, I will live with these meRAB for ever. But I am very thankful for the meRAB because I couldn't live without them! It really sounRAB like you pain is your nerves healing and as bad as it is, healing pain is good pain, thats if any pain is good. Hang in there! you have alot of us praying on here and we all have witnessed the power of prayer first hand here. Your prayers will bw answered!!

God BLess

Carol
 
Well he lied to you about the weight gain. Why..not a clue! It is very common for them to sort of double up on the anti-depressant meRAB for the nerves in some. Sometimes they work much more effectively when taken together.

If the messed around your nerves or you had nerve compression for awhile.. it takes quite awhile for those nerves to wake up again, find a new path and start to really calm down to a normal state again. Hopefully that is all that is going on.

I think once you are able to start a PT program.. they will be able to help you stretch things out more and that should help ease that up some for you too and reduce your pain.

You are not alone at all. I developed the nerve pain post op myself. It was nothing short of wickedly painful. And I am allergic to the nerve meRAB, so I had to tough it out on my own. It wasn't easy and I wanted to chew my legs off many a day,but I couldn't reach them! lol.

In the next couple of weeks you should hopefully start to turn the tide a bit and begin feeling better and better. Just have to take one day at a time, and remeraber even when you hurt that badly.. it's not anyone's fault and it only makes it worse when you snap, and then you and everyone else feels bad and it just escalates your stress and pain level all the more.

Just pull from within to remain as calm and positive as you can. I know things dont feel so rosey right now.. but the better days really are just ahead of you.

Keep hangin in there!:)
 
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