Pain Pump Issues

Pain Pump Issues

March 26, 2012

I have a pain pump that was inserted into my abdomen in 2000 and again in 2007 for severe spasms in my legs. At the time the pump was placed I was in the hospital on IV Morphine suffering from an unidentified neurological disease thought to possibly be ms or pls. I was unable to walk due to both ankles being turned inward so harshly that it felt like my ankles where breaking. After weeks of severe pain my heart began having difficulty handling the stress. A pain management team was brought in after much debate between the hospital staff it was decided... in spite of the fact that I wasn’t going to be alive long enough to justify the increased pain and stress of surgery, they would still give me the chance to see if I would benefit from the pump. They started the trial phase which I responded to miraculously well. The docs started to get excited at the thought that maybe this would buy me some quality time before my anticipated demise. I was excited at the thought of not being in pain and without the spasms I would be able to walk again. 

More meetings between the hospital staff discussing the pros and cons and even though they knew surgery was very risky we were all willing to accept the risks. These doctors had watched for months as I became increasingly ill causing me to spend more and more time in the hospital. There were days that they came into my room on morning rounds and I swear they were hurting just as much if not more than me. They felt helpless and unable to identify what was stealing my ability to swallow and control motor movements, a ghost of a disease that had nearly taken my life so many times. 

They proceeded with surgery and I did well with recovery. So well infect that I was able to be moved out of the ICU for the first time in many weeks. The pump has done more then they could have ever anticipated it not only controlled the spasms but allowed me to walk again. There are some cons that I have to deal with.

I feel like a cat with my claws in the ceiling and hair raised on end. Just over a week ago  I had my pain pump refilled with a new mixture and concentration of medications. The doc thought it would be a good idea to increase my dosage at the same time. Let me tell you....”that was an idiotic idea.” My legs felt like they had been injected with Novicaine. I could still walk if I was really careful but I was seriously at risk of being injured. I called the doc so that I could have the pump rate turned down and was told that I had to wait 2 days. *!*%#!** WTF! If I can’t trust my pan management doctor to be available in that situation...I can’t trust her at all. 

The first time I had a problem with her was when she ct my pump meds in half and then went on vacation. When you’ve had Morphine, Bupivicaine and Baclophen going into your spinal canal for years and then all of a sudden getting it cut in half you are going to send that person into seriously painful withdraw. The way I see it she has made two serious miscalculations on how the adjustment would effect my body...both of which made me very ill, actually I don’t think that she gave a shit. She should have known better. 

My meds were turned down after a week of the high dose and two days of being numb only to have me withdraw from the higher dose.  When you take oral meds the levels fluctuate as the medication wears off but when it’s going directly into your spinal column it is 24/7 of a steady dose which makes your body become physically addicted very quickly. 

I can handle pain very well but anxiety, gastro intestinal dysfunction, headache, skin feeling like sandpaper was rubbed all over it, stuffiness, teary eyes, agitation and feeling drained...I don’t handle very well. Thank goodness it starts to after 3 days. The real crazy part is since they changed the formula of meds my body still needs to adjust to that. 

The good part of all of this is that I got to see a different doc within the practice who turned down my pump. I asked tons of questions regarding the back pain and how it started after the catheter revision. I also told her of the many complications of that surgery leading to a 2nd surgery to stop the spinal fluid from leaking after months. I also asked about the hard lump at one of the surgical sites and she said it was not tissue but something like an anchor that was put in, She had no Idea why they would do that. I was not informed that they put a foreign object in me. I was told they just tightened up the stitching. Finally some honesty. She said it sounds like he may have nicked a nerve.  That is a possibility. 

Without Dr B. saying something went wrong I alway felt like that surgery was anything but normal. 

First he never told me that he would be changing the site of the catheter and nobody understand why he did that. 2nd He notified Steve that I was going to have a severe spinal headache because I lost so much csf fluid during surgery. 3rd I had huge bumps on my back filled with csf fluid at both surgical sites for a very long time with months of spinal headaches. 4th they attempted a blood patch which I have had before with no problem but when Dr. B tried to do it the pain was unbearable and he was unsuccessful because he couldn’t position the needle correctly. That lead me into having to have another surgery to close up the leak. He then said Dr. S needed to assist (she owns the practice and is now my Dr.) diminish

I never had 1 day of back pain prior to that surgery and no one can tell me what is causing it. I do have a bunch of degenerative changes in my back which showed up in the mri but when I have asked if that is what is causing the pain Dr. S skirts around the issue like she always has. It is time for an independent evaluation and get some straight answers. These guys are supposed to be the best in Phoenix. I never had even 1 problem with my pain docs managing the pump in Michigan. 

Mental Vacation

Who needs a vacation? Distraught at the thought of more surgery. My knee is healing well but my pain level has been increasing. I saw my pain specialist yesterday and found out that my pain pump "which is inserted in my abdomen" isn't working correctly. The catheter leading to my spine is kinked and will require another back surgery to fix it.

The last catheter revision required 2 surgeries, horribly painful tests and months of spinal headaches due to csf leakage. Still waiting for chest ct and results. I've been hanging by a thread which got clipped yesterday. When your financially broke, energy is drained,your spirit is crushed and you feel like a caged animal; STOP!

The only thing left to do is to take a mental vacation. As of 3:00 today I will be on vacation until Monday at 6:00 a.m. This is be kind to Carol weekend. I'm going to forget about life and turn off my phone, bathe in the warm sun by the pool, sip on drinks, listen to music, short hike in the mountains, hair cut, facial, manicure. If it doesn't feel good I'm not going to do it or think about it. You are welcome to join me.

Estimated Time of Recovery PVNS

Journal Of My Recovery From Open Synovectomy, Radiation, Manipulation, Recurrance of PVNS

November 7th MRI Diagnosis PVNS

November 15 Researching pvns, treatment options, finding surgeon. What will pvns mean to my lifestyle? Making a list of questions for surgeon.

Dec 3 met Dr DeComas, xray taken,  discussed if biopsy confirmed pvns she would switch from arthroscopic to open synovectomy.

Dec 14, 2011, Open front synovectomy left knee, 23rd surgery from other stuff

1 day post op in hospital, worked with PT department on crutch use.  36 hrs post op femoral block wore off. I was taking Tylenol, 10 mg Oxycontin ER every 12 hrs, Oxycodone 5 mg for break thorough pain, and injectable morphine every half hour and I was still crying like a baby. In the middle of the night switched to Dilaudid which controlled the pain but made me nauseated, Reglan & Zofran to control vomiting. pain 6-8. Drain still expelling much fluid.

2 day post op, Johnson Pratt drain pulled in late afternoon.2-3 seconds of intense pain.

3 day post op, discharged from hospital, medication, ice, many pillows useful to secure leg in drive home. Large zip lock bag for nausea. good leg and hip are hurting due to the extra stress.

Day 4 post op, feeling better, pain 4-,5, narcotics, lymph massage, ice, elevate. washed hair in kitchen sink and sponge bath 

Day 6 post op, pain 3-4, take meds prior to getting out of bed in a.m., tempted to use only 1 crutch at home but knee gives out without warning. need to get out of house.

1 wk post op, pain 2-3, 1st regular shower, reduced breakthrough narcotics, bruising is showing now, prefer to use 2 crutches in order to focus on correct strides. Good knee is aching due to the additional stress of compensating for pvns knee.

2 wk post op, pain 2-3,  stabbing pain begins, staples removed, unable to drive, use crutches only on outings. narcotics evening only to sleep. crutches in storage, resumed sex 

3 wk post op began physical therapy, beginning to drive short distance

4 wk post op ROM 56 degrees, frustrated with being gimpy, mentally anxious to return to my desk job but physically not ready. 

6 wk post op ROM 70 degrees, pain 2-3, stabbing pain intermittent, family stresses, financial stresses as bills start rolling in. Driving normal distances. Will make decreased monthly payment arrangements until return to work. 

7 wk post op, Radiation Treatment begins, 18 treatments at 200 greys per. 

8 wk post op 2/13/2012, Ready to return to work if not for RT, ROM 84 degrees, pain spiked  3-4 with increasing activity, good knee continues to hurt due to extra stress. 4 Radiation Treatments done, increasing fatigue, swelling. Rarely take narcotics.

9 wk, 9th RT session, feeling the cumulative effects, pain 3-5, slight burning sensation, vice grip feeling, heat at site, darkening of skin, swelling, fatigue is overwhelming. I had to back off on physical therapy. Compression, elevate, Ice, meds. ROM is still at 84%.

10 wk post op, At this point it's a mental game of keeping your attitude in check and not having too many pity parties.

12 wk post op radiation therapy finished. Physical therapist says one more month of pt. focusing on range of motion.

14 wk post op. My best range of motion prior to radiation therapy was 84 degrees. During radiation I lost 10 degrees, 2 weeks after rt stopped I’m at 81degrees. 

16 wk post op, 4 wks post radiation therapy ROM has been stuck at 81 degrees for 2 wks. Prior to RT ROM 84 degrees, lost 10 degrees during RT= 74 degrees, regained 7 degrees the 1st 2 wks post RT. 

18 wk post op, 04/18/2012, Knee manipulation under anesthesia followed up by aggressive physical therapy 4 times a week. Obtained 110° in surgery, had a reaction to morphine requiring iv benedryl. PT following day rom 110° with help 118°. Healing wise put me nearly back to week 2 post op, pain 5-6.

19 wk post op, 1 wk post manipulation, ROM 113° with help, pain level 4 with nerve pain feeling like a knife jabbing into my knee, with swelling, 10-12 hrs daily in cpm machine for 4 weeks.

20 wk post op, 2 wk 4 days post manipulation. ROM 113°, pain level 3. The nerve pain has stopped and my knee quickly stiffens up if I have it immobile for an hour. It is a very fine line between working it too much or too little. I continue to have problems with swelling. 

25 wk post op, 7 wks post manipulation 6/6/12. Surgeon is pleased with rom @ 113° which means I haven't really lost any rom since manipulation. She is hoping that the rom will continue to increase as the residual pain and swelling decreases  in the next six months, which will make it a year from surgery date. Pain level is 2-3 but decreases with moderate movement. It is a fine line between doing too much vs too little.  I finished physical therapy a couple of weeks ago since I have the motivation to do pt on my own, I  know all of the exercises that I need to do and I have easy access to a gym. My good knee has been hurting for nearly three months but is now constant and hurts nearly as much as pvns knee. Surgeon has ordered mri on pvns knee for  follow up and on the good knee to rule out pvns.

6 month post op follow up MRI 6/14/12. 9 week post manipulation 6/21/12. Per mri new diffuse thickening and rare intratendinous of pvns post surgical. Joint effusion and synovitis noted with additional hypointense focus superior margin which is new, decreased popliteal cyst however multiple foci of hypointensity present diffusely. Residual or recurrent pvns. My good knee continues to be swollen and painful awaiting mri results.  Constant dull pain level 5-7, diffuse swelling in pvns knee, minor swelling in non pvns knee, continuing exercises 3 time wk, ice, elevate. Range of motion at best 110° due to swelling. Pain may be much increased due to pain pump being reduced by 15%. 

06/03/2012, UTI treated with 4 days of Cipro, very very ill

06/28/2012 Bilateral steroid injections in the knees due to swelling and constant pain. Experienced a Cortisone flare increasing the pain for 2-3 days. Had a mild systemic reaction to the steroids causing severe anxiety, moodiness,  flushing of the face, slight difficulty breathing and increased heart rate, necessitating Valium to avoid asthma attack and tachycardia... this lasted  about 4 days. . The symptoms are slowly abating and my knees are feeling much better with very little swelling. Do your research prior to having steroid injections, systemic reactions are rare but can be quite severe and far outweigh the benefits of the shots. I'm unable to have the Cortisone shots again due to the reaction. 

07/08/2012,  2nd  UTI treated with 10 days Cipro, flank pain, very very ill

07/23/2012,  3rd UTI treated with Cipro, bad flank, abdominal pain, appointment with urologist 08/01/2012. Wondering if the subsequent infects have anything to do with the steroid injections.

07/30/2012, 1 month post steroid injection, pain level prior to steroid injections 5-7 nearly a month later it is now a 2-3, swelling is very much reduced. ROM estimate 120+. Knee continues to stiffen after being sedentary. Felt comfortable going down an escalator for the first time since surgery. The posterior knee cyst continues to enlarge causing minor discomfort. Knee constantly aches but actual pain is finally dissipating. My body feels very worn out probably due to all of the procedures and recurrent UTIs this past year. I had a dream last night that I had returned to work and I was so happy. Someday :-) The last 8 months has been more then challenging and I see it wearing on everyone around me. The battle becomes most fierst at the end.

08/01/2012, I saw the urologist appt, flow, nuclear study and cystoscopy scheduled. Been very ill and with less movement I'm not able to exercise my knee so it is stiffening more, heat is still coming off of it but from what I hear it is normal. Difficult to deal with pvns issues and other illness. 

Weight Gain and Joint Disease

First of all I am not picking on people that are over weight, I have much compassion for them. Extra weight is such a burden mentally, physically and financially. I want people especially newly diagnosed people to recognize the dangers of weight gain associated with joint disease and how to avoid it. If you are already over weight there are still ways to lose the weight and become healthy even when you are in the process of dealing with pvns. 

Due to not working and restricted activity from surgery I gained 10 pounds in three months. You may be thinking 10 lbs is nothing but my self esteem was plummeting and I was feeling worse every week. I knew that I had no right to complain if I wasn’t willing to change my situation. I found myself with two options... accept my own excuses or find a way to overcome the obstacles. 

I discussed with my doctors and physical therapist what I could have done differently and how to correct it, while being in the midst of dealing with limited movement and pain in my knee and back. First they corrected my misguided assumptions. My mistake was thinking there wasn't anything I could do about the weight gain, fatigue, deconditioning and the increased pain, (which rapidly takes place when you quit moving) until I recovered.,. I said, “but I’m in so much pain and I don’t have the energy.” The docs reply was “muscle pain and body aches increases dramatically if you are not moving enough and you lose energy when you become deconditioned.” Secondly,  The truth is that I knew what would happen if I didn’t adjust things to my new activity level but I didn’t care enough, was unmotivated and just being lazy.

These negative effects can be prevented this by knowing the risks of gaining weight and how quickly it occurs with joint disease. Talk with the doctor of how to maintain cardivascular health with an excercise program preop and post op. My doctor and physical therapist created a plan and will work with me to loss the extra weight, tone and get cardiovascularlly healthy again. The only way out of this situation is to decrease calories and increase movement.  I have gone from wanting to feel good to needing to feel good about my body again and that is the difference. I will not accept my own excuses and it feels good to take the control back. Don't wait or you will continue to gain weight.  With that being said, talk with your doctors before making any changes.