I feel like I am at the end of my rope.

I have been dealing with back pain since I was 18 (unable to sit for finals in college – had to take finals laying on the floor). At first the pain episodes were fairly short in duration and would resolve. Tests thru the years have revealed multiple bone spurs/disc degeneration on the spine - L4 anomaly – extra transverse process –scoliosis.

Through the years the episodes have become longer and more severe. I was diagnosed with spinal stenosis and DDD two years ago and have become increasingly disabled and the pain has become unbearable at times. My doctor will not prescribe anything beyond Darvocet– NSAID’s contraindicated as they contributed to severe gastrointestinal erosion in the mid 1990’s. I’ve done a number of rounds of PT with no relief.

Surgery is out of the question – I had bunion surgery in 1993 that resulted in DVT’s and pulmonary embolisms. Gall bladder surgery in 1997 resulted in some kind of blood complication.

I went to my doctor in April voicing that I could no longer live like this – that I almost wished I could die. The words of a desperate and hopeless person.
I agreed to go to a local Pain Clinic.

It has been a nightmare. I am almost too upset to write about this because I cannot see any hope…

I had an epidural shot on June 1, 2006. On June 7th I called to report escalating symptoms – no relief in sight. They gave no explanation but recommended an MRI.

I go for the MRI and they want to do a different kind of injection. I call for an explanation - the nurse I get on the phone treats me with unexpected rudeness and claims she knows nothing about the newest set of recommendations.

Now I know why. I sent for my pain clinic records and was totally stunned and appalled.

I am still fuming mad about the pain doctor's comments - I talked to a nurse and requested that the doctor call me to review his notes - she said she would leave him a note and he may or may not call me - plus he didn't have an appointment open for either another injection or an office visit until the end of July!!! Can you believe that?

She said that an epidural shot could have “moved some stuff around in there” – that was the extent of her discussion regarding my side effects.
The doctor’s report states that “patient seems to want to be in control of her treatment”, that I acted "bizarre and manipulative”, that I “kept my head down" – (Can you hear me screaming at this>>>>)
Isn’t being in control of one’s own treatment a positive thing? I am at a loss for words.

Insert person in severe chronic pain, alone, fearful of being paralyzed, fearful of not being able to function, crying - expressing feelings of hopelessness by saying I can't live much longer like this - ***????

That is bizarre and manipulative?

Oh – he also mentioned that I kept my head down too. That is most likely accurate - I was probably ashamed of my emotions at that point and ashamed of my pain/fear and having to be in this situation.

By the time I arrived for the epidural I was almost quivering with fear - certain that the needle procedure might cause some unwanted side effect.
I explained to this guy my history of blood clots in my leg and lungs after a bunionectomy and how surgery is not an option for me. In his report he more or less says he questions the validity of my reporting.

This kind of report makes me ashamed that I have this kind of pain and angry that someone would misinterpret my behavior and statements in such a distorted way.

These people are barbaric and frightening.

I feel backed into a corner and resent being forced to battle an inaccurate image of a “troublesome” kind of patient. Yes I want to take charge of my treatment, yes I had difficulty controlling my emotions and fear, and I had hoped that this treatment would ease my struggle.

I was able to call the medical director of the hospital and asked him a general question on how to contest this report. He pressed me for details but I said I was going to give the people involved a chance to call me on their own to respond and resolve this.

Now I am just too weary to fight anymore.

Question for anyone who has had an epidural steroid injection – I am having abdominal cramping and unexplained bleeding (I haven’t had cramps or a period for over 2 years) – and a change in my bowel routine.

Anyone ever experience this?

I called my PCP to tell them this wretched story – including the newest abdominal symptoms – the nurse says “What do you want me to do?” and “Hang in there.”

This is just horrible.

Ellecram, I have read your post, and my heart was just aching in doing so. My goodness you have certainly been through the wringer and had a bout of issues with surgies as well.. of course you are perfectly in your right to be frightened, and angered with the report and your treatment.

There is much I see in your post, mostly anger, pain, and hurt. It's perfectly normal to be angry at the hand you have been dealt with. It's okay to cry anytime and anywhere you need to. It's important to get feelings out, so long as they are not directed at someone else in blame, etc. It is NO ONE's fault you hurt, so stop being angry with yourself first! It is what it is unfortunately. You just need to figure out things going forward to help you manage your life. And you CAN still have a productive life.. though it will not be "normal", and it hasn't been anyway.. has it? Mine certainly has not been either, but I have made the most of everyday that I can. (And please.. I am in no way comparing my pain to yours.. so I hope you don't think this as being condescending in anyway).

(As a child, I was the never sit still person, very athletic kid, in every sport there was and biking was my mode of transportation.) I too hurt my back at age 18, now 44 and I have suffered much of that time in great pain and struggle. But I am a fighter.. and no matter how many times I've wanted to throw in the towel.. it actually made me fight even harder. I was told to never have children, that my back was not strong enough for it and it might cause me great harm or might lose the babies. Well, I have two lovely children, that are now grown up. It was very hard for me at times, but I pushed on even when I wasn't sure I could anymore. But somehow, something within.. just gave me the strength. And my kids and I had the best time with them growing up, even with the bad back.

I said no to surgery too for many many years, but this last bout was the worst it's ever been and surgery was my last resort to try and help ease the pain. I finally said enough after exhausting all non-surgical resources and walking was getting so difficult.. I had a fusion at L4/L5 9 weeks ago. I am better.. everyone sees it, and I feel it. It's major surgery and it takes time to heal properly, so I am not out of the woods yet, and may still have issues down the trail. But I would do the surgery all over again if it means my last chance to ease my pain and suffering.

Yes, we have to be in control of our bodies. BUT you also have to find the right doctor and/or doctors and become A TEAM WORKING TOGETHER to help you. It has to be a doctor that you have established some level of TRUST IN, right from the start, it doesnt work otherwise. You have to do your research and go shopping. You don't buy pennyloafers cuz they were on the shelf to wear with a ballgown, so be picky about your doctor.

DO NOT GIVE UP! YOU ARE ALIVE, and you have to keep the course and fight to get the help you need.

THERE IS NO "SHAME" to be had here. Your doctors see patients everyday that live in pain all the time. It's not your fault you hurt, nor is it theirs. So you do not need to hide yourself in any shame over this. IT IS WHAT IT IS. This is the cards we've been dealt and we have to learn to how to play and win the game is all.

NEGATIVITY has to be turned into a POSITIVE to win! To put yourself into the well of darkness and despair.. is a very lonely place to be, and only you can pull yourself into the light, where people can best help you. If you shut down and shut off, how can people help you? Honestly..they can't unless you let them help you. That does not mean to let them do what they like.. just let them work WITH you, so you don't feel they are working against you.

Knowledge is empowerment for you and the doctors. There is nothing wrong with you telling your doctors going forward.. such as:

You have been through alot over the years, have had several surgeries with serious complications and you are scared of having further surgeries because of it. Further.. you hurt so bad, you are scared, you have had bad treatment from other doctors that has left you UNTRUSTING of most and you need to know that you can have TRUST in the doctor so you can be treated going forward. And there is nothing wrong in telling a doctor that you can be hard to deal with.. straight up (if this is true).

Same with the doctors you will meet going forward.. check them out.. what are their credentials to treat you, what is their bedside manner like, are they agressive in treatment, etc.

ASK QUESTIONS.. that is being in charge and sets you up for the BEST SCENARIO to get you as comfortable as you can and then treatment will be much more successful for you going forward.

BUT once you find the right doctors.. you have to be willing to listen to them and let them help you.

The abdomen pain/bleeding you have could be totally unrelated. Go to your gynocologist and check things out. I had abdominal pain and bleeding too during this crap, and it turned out a I had a cyst on an ovary that was bigger than my ovary! And I was just crampy.. how bout that. They even asked me if I was in great pain.. and I said no, I had been crampy, but didn't think much about it really. So get that end checked out right away.

Well I hope that I have helped you even just a bit with all of this. I am a very caring and positive individual and am upbeat most of the time, even when inside.. it's not a good day for me, but I don't want to project that to others. But I believe in my inner light within and it burns ever so bright each day, and that keeps me going. I am surrounded by people that I care about and love and they also keep my going. I am not religious at all, but I do feel "blessed" I guess.

Your struggles are not over, nor are mine. But I choose to go at them with all the fight I can, pleasasntly, and to make my life and those around me that have chosen to share their lives with me.. with as much happiness and fun that I can possibly have and share. Laughter plays a huge role in my life and it can bring out the best in us all.

I wish you happier and healthier days ahead and I hope that fun and laughter finds it way to you each and every day. Please let me know how are doing. Take care. Tammy:wave:

I have had 3 series of 3 ESI and have never had any relief from any of the shots. In fact, they usually leave me feeling worse.

On the other hand, I did not have any changes in bowel activity.

I have 4 levels of disc herniations, 2 levels of spinal stenosis, scoleosis, spondylosis and a disfigured thecal sac. According to 2 surgeons, surgery is out of the question-even a microdisectomy was not recommended.

Unlike you, though, I am using the 100 mcg Fentanyl patch with 30 mg Roxicodone for b/t pain.

If you pain is disrupting the quality of your life, you should seek a new pain management doctor before you are labled as a "problem patient". Once you are tainted by the Doc's notes that you read, you might have a difficult time obtaining decent pain relief.

Good Luck!

Thank you both for your kind words of support and recommendations - it means a lot. I am at work now and can't really write a whole lot - but just wanted to express my gratitude that you both took the time to respond. I will keep fighting - Elle

No thanks is necessary Elle, glad that you will keep fighting. Take care of YOU! Tammy:wave: