PVNS Joint Manipulation, Journey recap

22 wks post op and 4 weeks post manipulation. Finally I'm beginning to feel more like my normal self. I received good news today... I'll be finishing with physical therapy next week and I also got clearance to return to work. Steve has been so very supportive and keeps reminding me that my health has to come before anything else.

There have been many parts to this PVNS journey. I began in December with a diagnosis that few doctors understood. Fortunately I have a background in the medical field and I know how to research. Shortly after starting my research of this rare disease.... I realized that it would be so helpful if there had been a research site solely focused on PVNS so I began this blog. As my knowledge grew so did this blog and the many links. I eventually found the Facebook site (PVNS Is Pants) and it has provided much needed support and guidance from other sufferers. It is there that I learned the human factor and not just the cold hard facts and statistics surrounding this disease.  I was very fortunate to have found a top notched ortho oncologist surgeon in my own back yard.  I then had an open synovectomy on my knee for the diffuse form of pvns. Making the decision to have radiation did not come easy. It is costly and has meant 2 additional months off work.  I am one of the very fortunate ones that could afford to be off work for so long.  It hasn't been easy financially or psychologically but it was doable. The RT caused excessive scar tissue to form which required a manipulation under anesthesia which also meant another 6 weeks off of work.  As I said it has been a journey... one that I never want to take again. I have made the decisions to attack this disease as aggressively as I could even though in the end I has meant taking 5 months off of work. After extensively researching pvns I personally feel that your best chance of getting rid of this disease is to kick the shit out of it in the first round of surgery and to destroy it's microscopic remains via radiation therapy. There are no guarantees but I'll take 10-20% recurrance rate vs 40+% any day.  I respect and understand that not everyone has this option for a variety of reasons and may feel differently.

I've been going to physical therapy for four months and I just received news that I only have 2 more sessions.  I can't stress the importance of finding a physical therapist that has compassion but encourages you to push through the discomfort and meet your weekly and monthly therapy goals. Of course I will need to continue going to our gym and working on my stretching and strength.

I continue to have problems with swelling, stiffness and discomfort but it sounds like it is going to be about a year before my knee feels more like normal.

PVNS, 1 wk Post Knee Manipulation, Feeling Sad

Awoke again at 1:30 a.m. due to pain. I hate taking medication and I'm tired of feeling drugged. Yesterday in physical therapy with the therapists help I reached 113° with my knee and I'm more easily able to do full rotations on the bike. After pt I return home ice, elevate, strap into cpm machine and deal with the dry heaves from working out so hard. Having the manipulation in many ways was like starting all over again except I don't have to have any more radiation.  The pain and swelling aren't quite as bad but it is still very similar to my experienced just after surgery.  The only difference is that my muscles are now stronger. I would advise that people build up the muscles of the effected joint prior to surgery.

I could scream,  I'm just so sick of my life revolving around pt, being immobile, pain and doctor appointments. I admire the people that have gone through this over and over but there is no way I could go through it again. PVNS is really a horribly shitty diagnosis.

I dream of the day that I can complain about having to go to work. Until then I'm trying to take advantage of my time off and finishing the many projects that I never have time to do. For the last 1 1/2 weeks I've been spending my days organizing a life time of photos and scanning them into my computer. I'll finish that project today and I can't wait. Sifting through the past has been challenging as I realize the memories that I have regained after being in a coma are 75% bad. A publisher once told me "going through trauma is good for writing books because people eat that shit up" he wanted me to dive deeper into the trauma. Instead of a rewrite I threw my manuscript in the trash. I don't want people to be entertained by the trauma that I've experienced but to learn from it.  Next I have a couple file drawers full of documents that need to be scanned in also. I figure it's a productive thing to do since I have to be in the cpm 10-12 hrs a day.  Yesterday I didn't do so well and was in it only a few hours. I then shut it off and told Steve " I just can't take any more pain tonight." I'm thankful for the machine but between the knee, back, a spot in my eyebrow that is suspicious and having to have a follow up ct of my lungs... I'm having difficulty staying happy. I'm not in a good space right now but I know time goes fast and this drama will end. I'm just feeling like a useless, drugged, bum that doesn't have any energy to enjoy being off work. Enough whoa is me...I'm in a very good shitty situation and really don't have any reason to complain.

PVNS, 4 Days Post Knee Manipulation Support

I couldn't continue taking the steroids that were helping to control the swelling. They give me horrible headaches, vertigo and nausea. With that said yesterday my knee started to swell more but by the end of the day I was flexing it to 110° with much pain. Even with taking the max amount of pain reliever I was still hurting and woke up after only sleeping two hours. Ice and elevation seems to be the only thing that really makes a big difference. This morning I'm pushing 90° and will be on my way to physical therapy soon. I'm currently in PT 4 times a week for at least an hour.  I don't care how much it hurts to bend my knee I refuse to lose  any range of motion period. I know eventually it will quite hurting but until that day I'm trying not to complain. PT went well and I'm back home strapped into the cpm machine.

My sweet husband woke up to find me on the couch once again. In a real pathetic manner I just mumbled "I don't want to hurt anymore." He made his lunch, moved the car, gave me a new ice bag and made sure I had everything that I needed. He takes very good care of me as I would him in the same situation.  You never know when the tables may turn so it is comforting to know that someone has your back. He is such a sweet heart and I couldn't love him more, even though I do every day. He may think that I get rather mushy at times because I'm always telling him how much I love, appreciate and admire him. The truth is that I was once in an unhealthy relationship and so I appreciate and let it be known how very fortunate we are to have found each other.

In 2003 I was in hospice and given a week to live. At that time the one thing that saddened me more than anything is knowing that I had never experienced a loving, respectful spousal relationship and I would die knowing that my spouse didn't love me. I later told my ex this since at that time we were still together after 20+ years and raised 3 children.  He said "quit feeling sorry for yourself." Wow, and we had just attended a friends funeral. I wasn't feeling sorry for myself just a realization. I honestly didn't think that he could go lower than that but he surprised me and did.

I knew that I had yet to experience the most important thing this life has to offer. I didn't expect to find my soul mate and I wasn't looking. Steve came to my door to fix an electrical problem and I have literally laughed every day since. There isn't anyone else on this earth that I would rather spend time and experiences with. That's why at times I look into his eyes and almost cry. Knowing he accepts all of the good and bad that comes with this package and that he loves and laughs at my quirkiness. If I died today I can say that I have had a full life and experienced and learned everything that was important to me.  I experienced love and learned how to be happy by myself or with another.

PVNS, Manipulation Under Anesthesia Procedure

I had my MUA (manipulation under anesthesia) for my knee yesterday. Originally I had an open knee synovectomy on December 14th 2011 and was making good progress with my range of motion. I then underwent 17 treatments of radiation in February/March and at that time due to swelling I had to decrease my efforts in physical therapy.  Radiation treatment can cause stiffness due to adhesions forming and that's what happened to me. I found that my range of motion was stuck at 81° for 3 weeks so I made an appointment with my surgeon. She told me that with hard work I would continue to make some progress but in the end I wouldn't be happy with the results.

I arrived at the hospital pre op 2 hours prior to surgery and they took my medical history and started an IV. I then spoke to the anesthesiologist about getting a nerve block which numbs the knee for about 36 hours. He and the surgeon agreed that it would be a good idea since I have difficulty taking enough pain medication to control the discomfort without getting sick. Getting the nerve block does have some risks and it is momentarily uncomfortable but for me it was worth it.

They rolled me into the operating room and gave me the happy juice that knocked me out cold. The manipulation procedure only takes about 15 minutes. They just bend the knee and break up the scar tissue that has been restricting the movement. I believe she got it to 110°. If you are too ggressive there is a possibility of fracturing a bone or damaging ligaments.

I awoke in post op in a great deal of pain (tears) and they ended up giving me 2 IV doses of morphine. I didn't have any problems with the first dose but after the second injection my arm started itching bad and then my veins became engorged with blood finally hives started emerging all over my arm.  At that point I remembered that when I had to inject the morphine in my port (another issue) I would get itchy. It's not an allergy but I'm getting more sensitive to it. Anyhow they gave me some IV Benedryl and that halted the reaction. Thank goodness. On a good note the morphine got the pain under control and shortly afterwards I was able to go home. I brought crutches to the hospital and since I could put weight on my leg I used them the first day as a safety measure because my knee was numb.

I had a CPM machine waiting for me at home and since my leg was quite numb I didn't have any problem going from my base of 70° to 110° max movement of the machine by morning. I spend more time in the cpm  because it feels better to keep moving my knee. I didn't have to take any pain medication until about 20 hours after surgery and that's just because I want to stay on top of the discomfort as the nerve block begins to wear off.

I went to physical therapy today and my therapist said he was watching as I walked in and said that he hasn't ever seen me walk that good. For the first time since the synovectomy I was able to make full rotations on the bike. I can't tell you how exciting that was. We did another full evaluation and I could bend my knee to 107°... with his help 110° but after he worked on it for a few minutes he got it to 118°.    He says that 120° is a functional goal. When I returned home from physical therapy I took some meds and strapped back into the CPM. I was very frightened to have this procedure done but I am very pleased with the results.

PVNS, Manipulation; emotional response

Bone Tired

Done! Finished! I Can’t Take Any More!

April 7, 2012

I have to go back in the hospital and have them do a knee manipulation because I’m stuck at 81 degrees. The thought of them forcing movement of my knee to break up scar tissue is almost an unbearable thought. Since I found out I just want to cry and I feel like I did something wrong. I have done everything that I was supposed to do but with the swelling caused by radiation I had to cut back on physical therapy. Not to mention radiation causes stiffness and scar tissue to form. I still don’t regret getting radiation but it has not been an easy road. Then I was told I have to wait until April 18th. At this point the thought of sitting out of the game of life for 2 more weeks before I can begin healing again fills me with anxiety about the impending pain coming my way. 

What do you do when you just can’t take any more? When fate continues to throw shit at you? When you are overwhelmed with issues and your brain shuts down? When you barely have enough mental energy to crawl in a closet and shut out the fate monster? Hell if I know that’s why I’m asking you. Ha Ha

Personally I’ve been in much worse situations and survived. You would think that the more things that you overcome the easier it becomes to handle the crap...but it doesn’t work that way, it actually becomes more difficult to handle. Sure you pick up coping skills as you tackle difficult problems but those skills don’t lessen the pain and psychological stress of additional procedures and illnesses. I just think to myself “God damn not again!” My abdominal muscles are becoming very strong from sucking in my gut handling things. 

I certainly don’t feel strong yet I know that I am. I’m anything but courageous...I’ve just had situations where I had no other choice but to push through my fears and anxiety and say “what the fuck” and move forward. I’ll write about some of those situations at a later date. Today I just have a lot of questions and I’m bone tired but I'm still smiling.

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.