Stopping in to catch up and say hello

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ms_west

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:wave: Everyone! I am looking forward to catching up with the old gang and meeting those who are new to the board. I often wonder about you all and where you are at in recovery process.

To provide a quick update: In Deceraber of 2008, I had my 5th spinal surgery and they extended my fusion from L3 to s1 and did major decompression work. I went into surgery knowing that it could help or make me worse. Well I should have known not to go ahead with surgery based on the fact that I had 4 unsuccessful surgeries. The odRAB were not in my favor.

Surgery #5 did not work and now I have jumping beans in my legs from nerve damage and they keep me up to all hours of the night. I also have balance issues. The neurologist is saying that I have chronic nerve damage and that there is nothing left to do.

The spinal surgeon thinks I have some type of scar tissue problem and that there is nothing else surgically left to do. I continue to suffer from lower lurabar pain, mid back pain, arm pain, both leg pain, and right foot pain.

So now, I am dealing with chronic cp pain and the fight of my life to be properly treated. Right now we are doing a conversion from oxycontin to methadone and let's just say this is interesting.

Anyhow, I have missed you ALL and will try to be better about reading and offer any advice that I can to those who are new in this fight. May you all have a wonderful weekend and Happy Mother's Day!!

Pepper
 
Pepper,

I'm so sorry to hear that this surgery didn't work out for you - I know you had very high hopes of getting some pain relief and getting some of your life back. I think if you wouldn't have had the surgery you would have always wondered though.

I'm heading in for surgery #3 after seeing my surgeon this coming week and I am also really concerned about whether the surgery will give me relief or not. I have already been on the unfortunate side of not getting pain relief from surgery. A recent discogram and upright MRI have found my problem though, so I'm hopeful the surgery will work this time.

Have you used the same surgeon for all or most of your surgeries? I decided to change surgeons this time because I don't feel my surgeon handled my lack of pain relief appropriately, made it overly obvious he didn't believe I still had problems, and wasn't willing to order additional tests in a timely manner.

How have you been holding up mentally and emotionally since the surgery? I'll keep you in my thoughts and prayers!
 
Kath - Hon I am so sorry!! :dizzy: 12 surgeries and soon your 13th surgery. You poor thing. You have been thru an extremely hard time. I can relate to the standing thing. My gp tells me just one day I am going to walk in and you will be sitting and to be honest if I wear my tens unit I can sit for approximately 20 to 30 minutes tops. I also like counters tops that are waist high. They are wonderful for leaning forward on or even those lovely grocery carts that one can lean on. Good luck with your surgery and I am having a hard time placing you.....hopefully it will come together soon.....you know how it goes.......my memory is just not functioning a 100% these days. LOL
 
Hello again,
I remeraber you from when I 1st joined this board back in deceraber, I'm so sorry that your spinal surgery didn't work & that you continue to experience pain.

I was just wondering if you could possibly give me some advice on how you have coped since your surgery??

After suffering with chronic back pain for nearly 11 years now my pain management doctor finally decided after exhausting all other methoRAB of pain releif that we should give the spinal cord stimulator a try.
So now I've had 2 spinal cord stimulator trials done & had the 2nd trial wire & electrode taken out today because my pain management doctor couldn't get the electrode in the correct place & I'm absolutly devistated. After the 1st trial attempt failed it took me a few months to get over the depression of it failing & having the 2nd trial fail & having it taken out today has hit me really hard, as now am left in pain with only my fentalyn patches as pain releif & they are just not working & am still getting lots of break through pain, my pain management doctor wants to see me again in about 6 weeks to reveiw my pain medication & discuss where we go from here, in regarRAB to the possibility of having a neurosurgeon do a 3rd spinal cord stimulator trial done. After exhausting all other methoRAB of pain releif over the past nearly 11 years I only have 2 more pain management options left to try, the 1st is to get a neurosurgeon to do a 3rd scs trial or have a pain pump implanted, but I've been in pain for the past nearly 11 years & I'm still only 29 & I don't want to keep taking pain medication for the rest of my life because of the effects of the medication on my body.
6 weeks seems like years away untill I go to see the pain management doctor again & I really don't think I can cope any more & I don't know what to do & I can't go back to work while I'm waiting to see him because my pain isn't under control at all, I'm at my wits end & would love it if you could possibly give me some advice on how you have coped since your surgery & possibly if you have any advice on more effective pain medication, your advice would be greatly appreciated. I hope you can find some good pain releif for your self soon xx
 
Oh Emily, I am so sorry about your MIL. Alzheimer's is tough to deal with and is a very cruel disease in my opinion. We lost my FIL to this disease and at the end it was really hard on all of us. (((Hugs))) I think you are smart to bring someone in if need be to help you out because it does become very exhausting and they have a tendency to forget how to do the simple things. Make sure she has a medic alert bracelet with her name and address on it if you don't already have one. You just never know because they do start wondering alot once they progress in the disease.

I am still homeschooling but it is very challenging this year. We actually have not done that well but life goes on. Hopefully things will be better next year if not we will have to figure out what to do. The kiRAB have learned to be flexible and work around my naps.

My children are doing pretty well. Sure they get frustrated that I can run them everywhere but hopefully that will change once my meRAB are adjusted. I have not driven since July of 2008 due to my severe leg jerks. My daughter is very compassionate and is a really big helper. My son, the youngest, gets frustrated and sometimes neeRAB to be reminded I can't bend or lift. However, I must admit I suffer from alot of guilt which is typical of most cp patients.

I am sleeping downstairs :( and we are in the process of converting our garage into our master suite. It was a tough decision giving up our garage but I just can't handle going up and down the steps all day long. I can go up them once or twice a day max. Hubby is talking about getting a chair lift.

Great to hear from you and I am so happy that disability came thru for you!!
 
Brenda this last surgery they did a discogram on me as well and it showed a level that appeared to be totally fine was not so fine. I think my back is more solid but that deep ache is still there not to mention the nerves.

I understand the no sleeping thing. My dr told me yesterday that is what is setting me up for the next day starting out on the negative. I actually sleep about 2 to 3 hours at night with waking up multiple times due to pain then I normally lay down and sleep from 11:30 to 1:30 during the day again waking up at least twice to have to stretch/change position. I never get into a deep sleep. We are hoping that the methadone will help with this.

I pray that things go well on your dr visit and please keep us posted so that we can continue praying for you. (((Hugs)))
 
To be honest, it has been rough coping with the carRAB I have been handled in life but LIFE must go on. I needed time to absorb everything.

I am so sorry that you have not received adequate treatment. It does become very rough after having multiple surgeries. I have had two different surgeons do my surgeries and about 12 different opinions. Everyone agrees that surgery at this point should only be done if I have other levels go out. This last time when they went in, my surgeon said he could see why I was hurting so badly, was amazed that my tests did not reveal the extent of the problem and I was definitely in need of two new levels being fused. The problem is now that I have arm pain to boot and they have only found 2 buldges but it should not be causing the pain. They think my nerves are now so messed up that they are not communicating with the brain properly.

Anyway back to you. What are you having done? Honey hang onto hope. Don't give up and go in thinking positive. New surgeon and hopefully he will find the cause. Have you seen a neurologist?

Are you under the care of a pm doc? I am still sorting out pm problems but right now I have someone who is helping me but they can't take me on permanently. Hopefully they can get me calmed down and then refer me to someone else. I really believe pm docs are the way to go. Surgeons don't want to get involved in chronic pm which I understand because their field is surgery.
 
Pepper,

It's soo good to see you again. I'm sorry to hear that you aren't up to your very best. And it's rotten that you didn't get the relief that you had hoped to get from your surgery. It's a hard thing to bear when what we are pinning out hopes on doesn't come through.

I am plodding through pm with Dr. Nguyen who continues to find minor miracles for me. But I must say that I have had the worst spell that I have had in the past three years. I between work and my back it laid me out. Nothing I had to take was cutting the pain and it was running my life. I spent two weeks wondering how I was going to make it through the next hour, then as quick as it came it left, leaving behind just trobbing discomfort and leftover agony. wonderful.......

Hang in there babe. Ella can always come down and take you out for a spin!
 
Peppa . I hope that you remeraber me , I have not been around for a while BUT i did have surgery back in 2008 and you helped me out more than you will ever no THANKS!!

I wish that your 5th attempt at surgery worked and helped you deal with your pain. I'm in the same situation as you are right now , can't sit more than 20 - 25 minutes with out my back killing me. I'm a carpenter and have been doing light work - such as making furniture and trim work , but I can't go more than 30 minutes with out stopping because of the pain that I'm in..

I so wish that we were not in so much pain , but every thing happens for a reason "RIGHT".. SounRAB like you are taking action on your pain , oxycontin to methadone - I hope that is working better for you!! As far as me goes - I;m scheduled for a discogram this thursday , and will hope fully get some much needed answers in the next coming days ahead ()` : - - PLEASE GET WELL PEPPER , I'M HERE TO CHAT WITH & LISTEN..

DeV
 
Hey Pepper!
I'm so sorry this last surgery didn't do it. I hope the PM can get you into a better place and find a good person to refer you to. How are your kiRAB handling this? Are you able to keep up with their schooling? Are you able to take stairs? Are you still sleeping downstairs in the family room? :(

I'm finally on disability, so at least the bills are getting paid. My MIL with Alzheimer's has moved in with us, so she's my responsibility. As long as I don't have to lift her or support her weight, I'll be okay caring for her, but if she becomes less able to move around on her own, we'll have to get help. I have motion detectors in various places through out the house so I know if she's on the move. That enables me to lie down when I need to. I'm always going to have pain, but the Vicodin helps me and my doctor is happy to keep prescribing it for me. That and my heating pad get me through.

Good to hear from you, but I sure wish things were going better. Sending you cyberhugs! (((((((Pepper)))))))

Emily
 
That's just like you, isn't it? As much as you are hurting, you are always wanting to help others.

For me, a recent discogram and upright MRI show that my L4/L5 disc is completely shot and that I also have a broad-based bulge at L3/L4. My sciatic pain is along the S1 nerve root dermatome in my left leg, and my sciatic pain is severe when I sit. I just haven't figured out how to stand 24 hours a day.

I have seen numerous doctors, including neurologists, neurosurgeons, orthopedic spine surgeons, physiatrists, and pain management doctors. Standard MRI's, EMG's, and a CT myelogram showed no problems other than a small reherniation at L4/L5 after having discectomy/laminectomy surgery there. I have been told by one doctor after another that nothing was wrong with me until a pain management doctor that recently did my discogram. He is also the one that ordered the upright MRI for me and found severe nerve tethering at L4/L5 when I sit. He said it is completely possible that my S1 nerve root is being compressed at L4/L5 when the other doctors told me this isn't possible. He said after the discogram that I will probably need a fusion, but I'll find out for sure this week when I meet with the surgeon.

My pain varies between moderate to severe, and I recently had to go and get my pain meRAB increased because I was only getting 3-5 hours of interrupted sleep per night. I am now getting about 4-6 hours of interrupted sleep which is a little better - I just can't find any position other than standing where my pain level goes below a 5.

Like you, I just don't see any alternative other than having surgery at this point.
 
I can't tell you how much I miss you!! I think of you all the time and in fact your ears must have been burning because Moldova and I were talking about you and the beach!!

I am sorry that you went thru such a big flare. These backs are amazing that it only takes one move. I now have given up squatting/bending completely. All it does it rip my back apart and it is not worth it. Thank goodness it decided to let up and you went back to your normal pain levels. But wouldn't it of been nice if they all left permanently? You can't blame a gal for dreaming, can you?

If I remeraber right, you went off morphine and to some new med....can't think of the name....ughhhh....this latest medicine (begins with an A or something??) is causing me memory problems. I remeraber you were having problems with the effectiveness of it, did it ever end up working for you?

I would love to know what these miracles are if you don't mind sharing them. Any all suggestions I am willing to try.

I can't believe you are still continuing to work. You are a very strong woman!!

You take care of yourself and feel free to pm me anytime.

Love ya!!
 
Hello Pepper! Like you, I've been away from the boarRAB for about 6 months. I'm back under a new name. I can relate to the frustration that you must feel after going through multiple surgeries with little if any relief. I am getting ready for my 13th...yes Thirteenth back surgery in June. My fusion failed at L5-s1 and my nerve roots are being impinged. The only relief that I can get is standing, just like the other poster. I have severe osteoporosis which is the root of my bone problem. Just turning the wrong way or coughing can cause a break in my vertabrae. I even broke my hip without any trauma. It just "happened". Thus the reason for 12 previous surgeries. But in my case the surgery being performed has ALWAYS solved the problem at hand. I've gone to the same surgeon at Hopkins for all of my surgeries and he must know my spine like he knows the back of his hand. My history has been one of breaking a bone....having surgery to fuse vertabrae........pain relief for many months or years........then a new fracture at a different level and the process just continues. I really know how you feel. I'm hoping that you get some relief soon. When I went from oxy to methadone I just did it "cold turkey". I mean, the doc said to me, "Today instead of taking your oxy, I want you to start taking the methadone." I never had any problems with withdrawal. I was taking the oxy for break through pain only. But with this recent problem the oxy has become a daily med for me. Take care and keep posting. Welcome back - Kath
 
Have you ever been considered for a spinal cord stimulator? My PM doctor mentioned it more for my cervical problems but was wondering - since you've been down the multiple surgical road - if this was ever an option
 
Robochick, I want you to know that our messages must have crossed. I am preparing a response for you because I understand exactly where you are at and right now I am in major, major pain so my worRAB are all jurabled. Be on the lookout because you will be getting a response soon.
 
Pepper so sorry to hear that this last surgery didn't work out for you because I know you have been through so much. You have always been here for everyone else so I want you to know that I am here for you now. I too am having problems after my surgery last year but no where near the problems that you have had so my prayers are with you always. I was told by the PA at my surgeon's office that I would never be OKAY because I had let my problems go for a long time before my surgery so there will be permanent damage. I am so amazed by how much you continue to do even though I know you must feel pretty bad most of the day.

Prayers to you
Linda:angel:
 
Hi Pepper......
I was just scanning through...and discovered this post from you....I am so sorry that the surgery didn't work. This is just so tough.....but we survive. I had the SI joint fused last June...didn't fuse at first...but hoping that the last 4 months have helped it fuse....I just sat down again for 3 more months....lets see what happens. It is feeling a bit better...so I am saying I am fusing...CT scan in June will tell the story....

We try...and keep on trying to escape the back/leg/neck/arm etc pain....sometimes it gets to the point we just say, ok do the surgery...and we take our chances....sometimes we win....but time sometimes will help...lets just pray time will help a little bit....

I am sending hugs and prayers to you...in the hope that things will get a little easier for you..

Nice to see others here too...hi to you all!!!!

Sage (Leslie!!!)
 
Sage, how was your Cat scan? Mine showed no fusion at 6 months. They started me on a bone stimulator today..I wear it for three months and then go back for a CAT scan again.
How are you doing with pain?
Faith1234
 
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