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Old 07-02-2012, 10:15 PM   #1
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MyHipsHurt HB User
Unhappy 17 years of pain and no doctor is helping :(

My story is a little long but I'll try and compress it. Here's the Cliff notes:
1994 - 17 years old - Broke both heads of my femurs, didn't know it, kept playing football
1995 - 18 - Started playing college football. My legs felt weird and hurt and x-rays showed the now healed fractures
1995-2005 - Hips go progressively worse. Took pain meds more and more frequently for break-through pain. No diagnosis made other than "it's in your head" despite seeing 6 different hip specialists.
2006 - Started taking pain meds full-time.
Early 2008 - 30 - Moved to CO for work. Hips much worse and in debilitating pain constantly even with medications.
Late 2008 - 31 - Coworker recommended a hip doctor that finally diagnosed what was wrong. Broken and never repaired femurs were damaging my joints but MRIs and x-rays didn't show the damage was very bad.
Feb 2009 - 31 - Hip surgery #1 - left hip - Doctor found the damage was extensive and massive. Much, much worse than imagined.
Oct 2009 - 32 - Hip surgery #2 - right hip - Doctor found damage wasn't nearly as bad as left side.
Dec 2009 - 32 - Stopped taking pain meds for the first time in
almost 3 years. Still in pain but was tolerable.
March 2011 - 34 - Surgical repairs wore out, pain returned, and I had to start on full-time pain meds again.
May 2012 - 35 - Pain meds becoming less and less effective. Worked with doctor to try and find meds that worked.
June 2012 - 35 - Doctor stops returning my calls, prescribing meds, or working with me to help. Can't work, take care of my kids, eat, sleep. Quality of life terrible.

That's the short of it. Right now I'm stuck without pain meds because the doctor won't prescribe me anything and I don't know why because he won't talk to me. He just says to come to my next appointment so we can talk. That's not until July 16 and I'm in unbearable pain. I don't even want to get out of my bed to walk 10 steps to my bathroom!

During my first surgery, they found the misshaped heads of my femurs had ripped apart my cartilage and caused huge bone spurs in my hip joints. There was no cartilage left in the left hip when they operated on it. They ended up grinding off about 1/3 of the thickness of the neck of my femur because it was so overgrown with bone spurs. I spent 3 months in bed after that surgery and lost over 100 pounds during the recovery. It took 6.5 months for me to be able to walk again and start putting on weight. I'll never trust an MRI again because I had about 50 of them on my hip over the 10+ years they were trying to figure out what was wrong and none of them showed any problems at all beyond very, very minor arthritis when in fact the arthritis was about as bad as it can get.

Thankfully my right hip was in much better condition so it didn't require a microfracture but just the removal of the bone spurs. I still had to spend 2.5 months in bed and it took 6 months before I could walk relatively normally again.

Before the surgeries were complete I was up to 120-150 mgs of oxycodone to control break-through pain on top of 150 mcg Fentanyl patches, oxycontin, morphine, opana, and just about any other pain med you can mention. I had to use ketamine sometimes because I was in so much pain I'd literally lie in a ball screaming for an hour waiting for pain meds to take effect. My mom called 911 once because it happened twice within a few days and she was scared to death for me. I couldn't breathe or talk or do anything other than lie in a ball on the floor writhing in pain.

Once the surgeries were complete, I weaned off all pain meds very quickly. The doctors told me it would take at least 4-6 months to come off the massive dosages I was on, but I did it in less than 4 weeks.

I was able to stay off the pain meds for 2.5 years until my joint space decreased to almost nothing again in my left hip last March. I can't get hip replacements yet because I'm 35 years old and those only have 8-10 year
estimated lifespans for somebody my age, activity level, and size (6'4 225 pounds - I've lost 40 pounds from what I used to weigh to reduce the stress on the joints). Once the replacements wear out (which they estimate at 8 years but don't really know for sure), I'd have to have it redone, but hip replacements don't work nearly as well the second time around, so I'd be looking at being 43 years old and not really being able to do much physical activity. I've always been a very athletic and active person, and the thought of being 43 and not being able to play with my kids, go hiking, or do much of anything active just kills me. That sounds like a horrible quality of life and I'm not willing to sacrifice the rest of my years from when I'm 43 until I die not being able to do much of anything very active. I'd also be stuck in a wheelchair most likely by the time I was 50 at best when the second set of artificial hips wore out.

I also have 3 degenerative discs L3-L5 in my lower back, with one of them herniated as well. The hips make the back worse and vice versa. From the bottom of my rib cage to just above my knees is just a mass of pain every day. The only thing that makes life tolerable is being able to take medication that allows me to get out of bed every day.

So as of March last year, I started to see a new pain management doc who's with my orthopedic clinic and went on oxycodone/oxycontin before switching to Fentanyl patches last fall. I had issues with getting them to stick once it got warm out so he switched me to oral medication (24 hour dilaudid), but it really didn't work. He prescribed 2x2 mg every 24 hours but said I probably needed more so we'd start small and increase it. I tried that dosage and it did very little. My breakthrough med oxycodone had also drastically gone down in effectiveness. I tried slightly larger dosages of the dilaudid over the next few days to see if a larger dosage would work, but it didn't. When I saw my pain management doctor next, he asked me if I'd tried this and I said yes and he was supportive of this approach.

I decided to give the Fentanyl patches one last try using Tegaderm patches to hold them on. I'd tried waterproof band-aids before and they sort of worked but with sweat, working outside, and playing with my kids (I'm a single dad of a 4 and 6 year old) the bandaid and patch would both come off. The Tegaderm patches stuck great but the patches were coming unbonded from my skin underneath and no or very little medication was making it into my system. I went back to him, gave him the patches I had left, and he put me on 30 mg of Oxycontin every 8 hours.

This dosage didn't do anything to combat my pain, either alone or in combination with the prescribed dosage of oxycodone. I tried the same approach again of increasing my dosage slowly to see what would work and found that with 3-4 at a time the pain was controlled enough that I could work and get up and move around. With 30 mg I was in so much pain I didn't want to get out of bed at all.

I called him to let him know this and left a message for his secretary (it's impossible to get them to answer the phone), and his secretary called me back to say I needed to take the medication as prescribed. I told her if I did that I couldn't function and either needed a larger dosage or a different medication. She told me I had to take it as prescribed period. Since I'd already taken a larger dosage for the first week I had the medication to find an effective dosage, which was in line with what I'd talked with him about before, I was going to run out within a couple of days which I told her and she said she'd tell the doctor. She simply told me to take it as prescribed and he'd talk to me at my next appointment (over a month later!).

2 days later I ran out and called the doctor to let him know. No call back. I had a prescription for my breakthrough oxycodone which I couldn't fill for another 3 days so I lay in bed in agony and going through withdrawal. I was finally able to fill my oxycodone, but now with no long-acting medication to go along with it, plus the fact it really wasn't working well, I had to take a larger than prescribed dosage of it. My oxycontin refill was due in a week so I called the doctor back to ask for that. His office didn't call me back.

I'm now stuck in bed with no pain medication and can hardly move. Life is a never-ending set of days in agony. I went to see a new pain management doctor today, but like many if not most "pain" docs these days, he doesn't prescribe pain meds and wants to find ways to fix the problem. He suggested I might need to go ahead and get a hip replacement, but obviously has never thought about what that means later in life for me. He then suggested we try burning the nerves to limit the pain, but said that will result in a loss of some motor control in my hips. I don't know exactly how much loss of motor control I'd be looking at but since burnt nerves will grow back in 6 months (from what I know), I'm willing to give it a shot. He's going to try my back first and possibly do the left hip at the same time depending on what my insurance will pay for.

In the mean time, I have no meds to treat my pain and it's very likely I'll end up losing my job because my brain just won't work with the amount of pain I'm in. Somebody asked me for my phone number the other day, the only phone number I've had for the last 4 years and something I give out to people all the time, and I simply couldn't get my brain to function well enough to remember it. That's how debilitating the pain is. I have an excellent job heading up an IT Consulting group for a Fortune 500 company, and the job requires a lot of critical and very difficult thinking I can't do unless I have medication to treat the pain.

So life right now is full of pain, I can't do anything other than lay in bed and take sleeping medication to try and pass out and not be in excruciating pain every minute because there's no way I can possibly tolerate that, I can't do anything with my kids (even the simplest things), I can't find a doctor to prescribe me what I need, and I may lose my job now. Life is just awful!!!!!!!

 
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Old 07-03-2012, 01:34 AM   #2
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Re: 17 years of pain and no doctor is helping :(

MyHipsHurts I am sorry that you are so miserable. So are you seeing a PMP or are you seeing two? I was confused when you said they wouldn't call you back and you went to another Pain Doctor. Please be careful when doing that. It might prevent you from getting in Pain meds. So why your first doctor stop calling you back? It has to be a reason. Did you take the medication as directed. I know you said some wasn't working. Was they not working at all? The reason I ask is because those meds I have been on before and they are very high narcotics. But I am not saying this is the reason because I DO BELIEVE THAT YOU ARE IN PAIN but when you go in and tell the doctor it's not working, all the time and it is some high narcotics that doesn't do anything but send out red flags to the doctor. I am just telling you. They like for you to work with them a little. They at least try and give it a full month and sometimes more to see if it's going to work. Another question did you take more than was prescribed originally? I am sorry if I am asking so many questions. But I use to work for a PMP Years ago and I am now on disability for my disease and it has pretty much destroyed all my organs,heart,lung,brain,(pituitary tumor), and I am going to PMP also. I take very high narcotics and I have been going up for years. Finnally they told me Ill be taking these meds for the rest of my life. WOW! My pmp wanted to get me a pump that wouuld just pump out so much dilauded,and other drugs all day. And it's implanted in your body but I have heard so many people talking GREAT about it. I wish I could get one,my PMP wanted me to get scheduled my admit to the hospital and everything then I got sick with the bad headaches and I passed out. When I woke up it was the next day and I was diagnosed with a tumor. So I couldn't get the implant pump! but maybe you should One: Make sure your only seeing one PMP. Two: talk to them honestlky about how you are feeling and all the strong med you have been on that has not worked and They want to see if you are able to take injections,etc. But if you just be honest with them It will go fine. Let me Know. I am here for you saying alittle prayer.
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Dx Tumor (pituitary) 2010
Dx Pancreatitis 2011
Pancreatic Stent
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Power Port implant 2010
Total Right Hip Replacement

 
Old 07-04-2012, 04:44 PM   #3
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Re: 17 years of pain and no doctor is helping :(

I'm sorry to hear about your pain...

I also caution you about seeing another Dr. and trying to get more pain medication. If you signed a contract with the first one...You need to terminate the relationship, in writing, and make sure they know about this before you receive medication from any other Dr.

Unfortunately with narcotics..we just aren't allowed to take more medication than directed unless you have spoken with the DR. and again, have it in writing. But because you did this on your own and then just called the Dr. afterwards...this is likely going to cause a huge issue and possibly even get you dismissed from their practice along with having notations on your chart for not using narcotics as directed..

Believe me...we all understand terrible pain. In situations like you had...the other choice was to go to the ER...But most of the time it's recommended to contact the DR. first and tell them about your added pain and see what they say to do...

Again...we empathize with your pain....but with these types of medications...you just have to take them as directed and never change your dosage on your own.

Obviously you have to make your own choice about the surgery...but if more than one Dr. is recommeding getting the hip replacement...then you may as well be having less pain for 8 to 10 years and then worry about what to do then...otherwise..you will just be trying to chase the pain with more and more medication. And most Dr.s yes...will want to try and "fix" a problem if that is possible...so I just urge you to really look at this option. You may find it harder to find a Dr. who will just continue to prescribe lots of narcotics when there is an option to make you better.

I've had 3 fusion surgeries, foot surgery for a Morton's Neuroma, many lap surgeries for ovarian cysts....And all of these do not last forever...The neuroma has grown back and it's been less than 10 years....My neck has needed re-fused all those times as well as puts so much pressure on the upper and lower discs....And the lap surgeries caused more adhesions each time..

However...all the surgeries were done when absolutely necessary and at least afforded me less pain for a period of time.

I have a friend who has had double hip replacement and is doing fantastic!..Playing golf a few times a week...Walking perfectly...and barely has any pain and is managed with NSAIDs...

So..I'm not saying it's the miracle cure here...But why not do something that can give you a good 8-10 years..And you never know the medical advances that will happen by then as they are always researching...

And back to the medication...Again..you need to decide whether you are terminating with the one Dr. who prescribed the opiates because even without a contract....there are 41 states that have the Prescription Monitoring Program that follow your name and know anywhere in the state that you fill prescriptions.

I just would hate to see you end up without any opiates from here on out and having a black mark on your record

 
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