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What do I do Now???? Need advice from those who understand

Started by LadyMary42 on 08/18/2010 6:03pm

Hello, my name is Mary. I am so glad I found this web site with others who know and understand what we deal with in our daily lives. I am a disabled nurse, I was a nurse for 33 years and in 2007 I was thrown down by one of my patients ( they did not know what they were doing). Anyway my first back injury occurred in 1998 and since then my chronic pain has been a ongoing problem. I have had every test, every injection and procedure in the books and then some. During this injury in 2007 I had to have spinal surgery, a Laminectomy and Lumbar Discectomy: I had already had several diagnostic test during the past few years/ months and these were the findings:
Scheuermann’s
Fibromyalgia
Kyphosis
Sciatica
Scoliosis
Spinal stenosis
Spondylosis
Compression Fracture
Facet Joint Disease
Lordosis
Neurophathy in arms and legs
RSD/CRPS
Radiculopathy

The surgery was a failed surgery and made things 10 times worse. First of all I developed pneumonia and went into respiratory distress, was on a vent and in the hospital a month. They had to tie me down cause apparently I was fighting, I was in a coma so I had no clue of what was going on. When I was able to get off the vent I found I could not move my arms and legs, took me months to regain mobility.
To bring things up to date, I am having terrible pain and find it very hard to walk. Every nerve and muscle in my body feels like it is attacking me. The neurosurgeon just diagnosed me as having
Arachnoiditis. No cure!!! My pain is almost driving me to insanity. He suggested a Morphine pump, now I take oxycodone 30mg four times a day and morphine 30mg three times a day plus soma. I do not like what I have read about the pump, I am so scared to have another surgery. I am so stressed as to what is the right thing to do. As it is all truth be told the oxycodone and morphine I am on does little for the pain. I have no life anymore. And I do not think I can live with this agony the rest of my life. I would love to hear from anyone who is in the same or simmular position and get some other perspectives. Another back surgery is out of the question, I was told I probally would not live through it because of the damage from the vent and resp. Distress. HELP.......

Mary ( aka. LadyMary42)

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8 Responses

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dear mary i have pretty much the same 15 disc all 7 in neck others in lumbar so sorry about your surgery..i chose not to. you might try therapy, other than being a nut it did help i have a cane for now it helps. im in so much pain my meds dont help very much. yea i feel my live sucks i have triplets grandkids and cant pick them up,i cry alot....people think we are puttin on. im in pain now from looking at computer..so gotta go....god bless you mary.......anita

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Hi Mary - I just wanted to send good thoughts your way. I suffer with chronic pain and a laundry list of a dx. It is so tiring sometimes. I'm grateful for a good pain management doc but it's still a process of pain, grief, and shifting sand. Just try to take things bit by bit, there are some pain psychologists too - mine helps me manage the fear and anxiety that seem to hinder my ability to make clear decisions. I'm sorry I can't comment on the pump firsthand, I knew someone who had it and it gave her life back but I'm sure there are opposite stories out there as well. Good luck with your journey... and please remember that you are more than your pain!
C

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Mary:

I have pain, numbness, and tingling in my buttocks and my legs. It is so bad! I, too, have scoliosis and I believe spondylosis, also osteoporosis. I just wanted to tell you to keep your chin up and also that maybe you should at least do the trial for the pump. You have to do that before they permanently implant it. If it doesn't work, don't get it implanted. But if it does it could be a whole new life for you.

Take care and let us know what you decide.

Pam

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hello mary, I feel so bad for you, what a list of diagnosis ! all of which has no known cure or treatment. I have cervical spine stenosis from C3-C7 along with degenerative discs and degenerative joints in my entire spine from the neck all the way down. Have you tried acupuncture? Of all the treatments I am currently receiving (pain program at present time: biofeedback, PT, psychologist, MD), if I had to choose only one, It would be the acupuncture. I go to my acupuncturist every 3 wks to maintain my pain. If I have a flare, I try to get in right away. I've tried skipping treatments but always end up in her office in a mess, so I finally accepted that this is something I need to do on a regular basis. For the first 3 yrs, I did not need any pain meds because I was using medicinal cannabis (legal in CA) but now things have worsened and have been on muscle relaxers and synthetic morphine for about 9 months. You sound miserable, I think your only option would be a pain pump. I hope you can get some pain relief from it. I think that all of us here have to realize that we will NEVER be pain free. Hey, i'm happy when my pain is a 3-4, thats my "normal. Even when my pain is a 7-10, when I take my pain meds, i'm only down to a 4-5, BUT its better than 7-10. I just prayed for you! God Bless You, I hope the Lord will help you find a way out of your pain.

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hi Mary,
Just like the others who have replied to you, there are those who understand the pain you are in. I only found this site today and already it has helped me mentally. To know that I am not crazy or being a whimp when I am in pain. I have had L4-L5 fused in 2006. Then in 2009 L5-S1 fused and just this past May hard the hardware removed. I have not tried accupuncture yet but have only heard positve feedback from those that have. I now see a pain management doctor who told me that the only help I can get is to have a spine stimulator put in. My surgeon however says that will only help with nerve pain in legs and not the pain in spine. I know two people that had morphine pumps and I personally not too sure that is the answer. They both have become addicts, so to say.
Have they tried Lyrica for you? It was developed for Fibromyalgia. I took it for a brief time and it did help with pain, but during the second week of being on it I had an allergic reaction and had to stop. I am currently on vicodin and klonopin. Neither are doing much good just takes edge off. I am afraid to bump up to oxycodone or morphine, but med combos are my only choices at this point because my employer shut there doors and I no longer have insurance. Have been on disabilty for over a yr. many have suggested anti-depressants as form of dealing with pain.
I wish you all the best. As for surgery to install pump, I would look into all other options before having that surgery. I try getting into a pool as often as I can. I don't get in an swim like Micheal Phelps, I just wade around and do light stretching that I can only do in water. It helps me improve my range of motion and the weightless feeling helps.
I jumped right into surgeries and I wish if I could go back I'd get 2nd and 3rd opinions.

I hope the right answer will come to you and you will find relief :-)

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Hi Mary, Well first of all, I think you are doing the right thing, logging on, sharing your feelings and looking for help from others. I have degenerative disk disease, lower spine, and ive not been able to work for three years. I also have hip dysplasia which just means my bones are crooked and cause inflammation and thus a lot of pain.

I think you need a good therapist, someone to talk to weekly, I have a social worker and I wish I had a psychotherapist, but at least I have a place to go. ALso, Im from Boston but stuck in Canada, in Montreal, and the health care system here for people like us is abysmal, so having access to doctors is a plus. I had to wait a year to see a back specialist, and same for my hips, and then I had to wait 2 years to get to a pain clinic which will happen in a couple months!

Then I think its important that you find a pain specialist, or a pain clinic, if you don't have one. You have many issue, I don't know what I would do with all those conditions. My pain is constant but managed with morphine x 10 mg four or five times a day, but it could be stronger but my MD won't increase it, and since it took me two years to get a family doctor here, I'm stuck with him... I also am on a Fentanyl patch delivering medication 100 mcg and i wear it for three days.

Im assuming that you've probably been depressed, and I know that sometimes I think, Okay, Im not going to live like this for another twenty or thirty years. Im isolated because I dont have any friends and dont know anyone in this city, so that is bad. Hang with your friends, your family, your partners, etc., they will help you. Make sure that your pain is taken care of and if it isn't, fight for it.

In Canada there is a medical marijuana program and though im poor and living on welfare, Im going to try to sign up for it because it supposedly helps lots of people. Depending on where you live you can think about that.

So, keep talking, that's all you can do. We don't know about tomorrow, all we have is today. That works for me, because really, all we have is right here, and right now, so it helps to keep things in the moment, to be present to every thing, to the pain, but also to the glimpses, no matter how small, of the beauty in the world: to the smile of a child, or the nod of an elderly person, a beautiful sunset, a great piece of literature, a fun recipe. Don't think that you are all alone, even though you may feel you are. There are many like us suffering like you.

FInally, depending on your ability, maybe you can start a pain group in your area. I'd like to do that, but then I wonder if I ever could go, cause its hard to get to therapy once a week, but do something that you've never done before. I recently started writing again, not just poems but short stories and novels. Get a book on Vibrational Medicine, which explains lots of wholistic therapies that doctors would never think about but that have been known the help heal people, not cure, for the most part, but heal. And healing is possible, for all of us. Stay in touch! Rangdrol

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I am horrified at the stories of pain meds. I just had surgery on June 17, iliac grafts X7 so hip surgery as well as C2-7 grafts, fusion and decompression.. you know, it was the best thing I have done for me. Like many have said, the drug cocktails are not so great and I too have had allergic reactions to most drugs. I am lucky that my husband is very supportive and my rock, but the drugs don't work.... you are just creating more problems.... after my surgery I found immediate changes (and I have been dealing with this since the early 90's...) my best suggestion, get into some "blue water" programs - that warm water is healing.... keep moving, my biggest issues were my so called down days.... stay mentally active and physically do what you can... don't be a hero, if it hurts stop.... but most of all stay onto your doctor..... and I found with my doctor blatently saying, no stop writing prescriptions, they only mask what I am going thru really helped.

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reply to terrym

I don't know what you mean when you say you are "horrified" regarding the stories about meds.

I don't know what your personal illness is, and no one can know what my illness is or isn't or what anyone else's illness is. To say that "drugs just don't work" may be fine for you, yet this is a place where people are seeking to talk and share their experiences and their common bonds. For most people, pain medication is absolutely necessary, and yet, everyone has to decide that with his or her own doctor. To make a judgement about people who experience chronic, relentless pain, and to suggest that soaking in water...is a viable solution is a bit out of touch.

Additionally, I don't want to be judged, I have enough dealing with incompetent doctors (who usually take only one hour of course work on pain, in their university MD courses) I do not want to have to deal with people who are going to judge those of us who are on medications.

Chronic pain is debilitating and I've tried steroid injections and other therapies which did not work. If I didn't take medicine I would literally be screaming and writhing on the floor, and eventually jump off a building so that I didn't have to feel that pain.

Also, no one would consider telling a cancer patient or an Iraqi soldier who had lost a leg not to take any pain medicine, likewise, people with severe, degenerative illnesses who live with chronic pain do not want to take pain either, but we have to.

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