MRI Nightmare

Recovering well from having the PVNS removed from my knee in December. Now Im just trying to get set up for radiation therapy. There have been so many bumps in this process that Im beginning to rethink is it worth it. MRI attempt #1 failed because the nurse didn't chart that I didn't need a contrast prep (to overt allergic reaction). MRI #2 successful and lasted an hour. Well that was to much to hope for. I got a call after I returned home and they said that they scanned the wrong knee. What? It's very obvious what knee needs to be scanned. MRI#3 I took my contrast prep at 7:00 last night woke up at 1:00 with severe headache, spinning, sweating, shaking by 2:00 I couldn't stop puking. By 3:30 my heart rate was so high and I was really scared to the point of almost calling an ambulance. I'm a medic and don't overreact about anything, but I also won't call unless I'm positive that I'm going to die if I don't. Foolish maybe but ERs have their own dangers. I think I reacted terribly to the prednisone since I am now starting to stabilize and it's now 9 a.m. 3rd attempt at MRI unsuccessful. Oh, I forgot to tell you that when I was getting the MRI my knee was heating up I think because it was touching the top of the machine. It was moderate discomfort and along my incision it was all red but not so bad this morning. WTF. I'm not doing anything else until I get some answers. Sorry for such a long post but I think that it's an important reminder that even the most benign tests and procedures have risks.

6 wk post-op hanging at 70 degrees

Feeling Haggard today. Six weeks post-op and I suppose I’m doing O.K. in physical therapy. I began physical therapy 3 weeks post op and by the fourth week my range was 56 degrees, 5th week 64 degrees and 6 weeks I’m at 70 degrees. I suppose the important thing is that I’m progressing with my range of motion and I’m returning to a more normal activity level. My therapist said that it’s easier to recover from a TKR than an open synovectomy. I just wish that I had concrete figures from the same surgery that I could compare with. The PVNS is under control and I’ve done everything that I can to protect my joint. I’m being set up for radiation therapy and will soon start that treatment. Pain level is at a 2 and I’m rarely taking any pain medication. I continue to ice it after pt. I’ve also noticed that the day after pt it is very difficult to do my home exercises due to swelling.

I can not emphasis how difficult it is to feel ill day after day, month after month without any end in sight. I’ve lost faith in my current doctors ability to diagnose and treat me, so now it’s time to seek one out the has more knowledge. I don’t want to offend him but I can’t handle the thought of driving an hour and paying money only to be told I don’t know and for me to think “I didn’t think you would.”  But what type of doctor do I need? First I need to make an appointment with my pain management doctor and get her take on my back MRI results...until now I haven’t felt well enough to drive the distance due to my knee. Then I’ll contact my primary physician and ask what type of physician I need to see to be diagnosed because I can’t continue like this. I’m still having mild difficulty breathing and it’s really starting to concern me because my energy level is getting worse and not better. My husband told me that my breathing while sleeping was concerning him. I don’t want him to worry about me but I also know the doctor won’t have any answers and he’ll just want to do more tests. It’s 1:30 in the afternoon and I feel like it’s 3 a.m. I really miss working and want to return. I received a call yesterday about a position and I felt crushed when I had to tell the gal that I couldn’t take it. I haven’t even been looking for a job and keep receiving calls...which is good.

I also need to make a follow up appointment with my surgeon. It feels rather weird and not terribly important because there is another doctor covering for her until March. She is out on maternity leave. I still haven’t gotten my biopsy results. Just another sign that I’m overwhelmed and I  just need to take one thing at a time.

How To Manage Medical Bills

Whats Money Compared To Having Your Health

To be ill means that you will be paying a large amount of money in order to get well. Insurance is essential but when you aren’t able to work and income has ceased a small co-pay looks mighty big and can be stressful. I knew that with all of these unexpected bills I would have to put my money management skills to the test. I‘ve only paid the absolute minimum amount in order to obtain and continue all of my treatments. 

It has now been 6 weeks since surgery and most of the bills have arrived. I paid for all of my doctor office visits when they occurred. Now I have a yearly deductible to pay for 2011, pre-operative Ct, Xray and MRI bills, surgeon, hospital, laboratory and anesthesia fees. Physical therapy fees and of course I need to pay my yearly deductible for 2012. Radiation therapy has it’s own costs such as office visit, post operative Ct and MRIs in order to map a radiation plan. Then there will be daily radiation fees. Maybe you can see where I’m going with this. Note: Don’t wait over 6 weeks to contact billing departments or they start thinking that you are avoiding them. Which in truth you may be... but It’s always best for you to contact them vs them contacting you.

I’ve held off on making payment arrangements until the bulk of these bills have come in. Now it’s time to determine exactly how much money I squeeze out of my budget on a monthly basis. Then I look at how much I owe to each facility and equally divide out the money. I then call the creditors and let them know I would like to set up temporary payment arrangements and then renegotiate the terms when I’m able to return to work and give a realistic estimated time. Facilities need to know that you are committed to paying off your debt expediently but that it won’t do anyone any good if you commit to paying more than you have. Everyone can relate to having unexpected expenses but a predetermined amount must be paid consistently every month and then when you return to work the terms can be renegotiated. Until then assure them you are committed to paying the debt off and thank them for their patience and cooperation. Caution!! Do not under any circumstance (some places may strong arm you) agree to pay more than what you are able to because if you do you’re going to default and get yourself into trouble.

In my specific case I know that I’m going to run into even more medical expenses because they still need to find out why I am experiencing the original complaint that brought me into the doctor. If this is the case you must be even more conservative in your figures. Now it’s time to relax and refocus on healing, knowing that you’ve done everything within our power to keep your head above water financially.  

Illness, Overwhelmed, Time To Parent Self

Six weeks post op and it seems like my life has been a whirlwind of drama since September. Many things were happening in my life much to quickly and I found that I was reacting to them in a negative way instead of positively acting on them. I lost two jobs in 2011 because of illness and losing my second job just after being married in September was a major blow to my ego not to mention my financial status. Then during my work up for back pain I get diagnosed with PVNS. Wow I had no idea how much added stress and complexity of events that was going to add to my life. Now that I’ve had surgery, well into physical therapy and beginning to follow up with radiation I can finally refocus on what brought me to the doctor in the first place. 

Needless to say I became overwhelmed and paralyzed with fear and unable to adequately deal with anything. So I took some much needed time out to parent myself, reorganize my thought process and re-energize physically. Why do we recognize when our children need to take time out but we as adults ignore the same need within ourselves? 

I learned along time ago that at some point in everyones development they must learn to self parent. But what does that really mean? Well a parent loves unconditionally, provides encouragement, comforts, sets limits in all areas of life not to restrain but to protect a childs health and mental well being. A parent urges a child to explore and see things from different angles, to troubleshoot, take chances and solve problems. A good parent knows not to compare your child with another because each child is unique and has very specific talents which helps to build their self esteem. A parent praises their child and avoids criticism but is consistent with rules and assertive in identifying the behavior that needs to change. Listens to the childs concerns, maintains a safe environment, provides order by setting boundaries, recognize with rewards and identifies consequences, enforces healthy eating habits and activity levels, emphasizes moderation and responsibility, but most importantly gives time to the child. As adults we need to make time for ourselves. This is not a luxury but an absolute need in order to maintain a healthy active life. So yes, I've had my time out in the corner, cleared my mind of all concerns so that I can look at everything from a fresh perspective. 

PVNS, Post-Op 1 Month, Open Synovectomy

My pain level has remained at a  2-3, and after 2 weeks the stabbing pain has finally diminished. I continue to take 5 mg Oxycodone in the evening when the pain seems to be worse. I believe that if I was just dealing with the knee pain I would have been off of the narcotics by now but I’m also dealing with an angry back that insists on spasming because I’m compensating for having a bum knee. I didn’t think I would still be in pain this far out from surgery and I’m becoming frustrated with having a gimpy knee. 

I still need to follow up with the malady that originally brought me into to the doctors. The PVNS was just a side trip that I was forced into taking during my time off work. Which made for good timing to recover from surgery and be able to receive radiation therapy. I’m still faced with the original problems of back/flank pain which the MRI showed a lot of degenerative changes along with cord flattening. The radiology oncologist said that those finding could definitely be causing the pain but it still doesn’t explain the severe fatigue and overall muscle aching (it isn’t fibromyalgia either). The chest CT showed progressive pleural lining thickening, scarring and lymph enlargement and I’ll have another CT in a couple months because the process isn’t far enough along for them to identify what it may be. Boy that makes me feel real secure.  Unfortunately the last two weeks I’ve been experiencing shortness of breath which I’m blaming on generalized stress due to feeling ill all of the time. My doctor did tell me to contact him if I noticed any changes in my lungs, but I’m sure that I’m just being a bit paranoid.

I hate making the hour drive to see my primary doctor and surgeon so I’ll schedule the appointments at the same time for another week out and do the same with my pain management doctor to address the back issues. Can you tell I hate seeing docs not to mention the expenses that I’m accumulating with all of these tests and appointments. I dislike spending money while Im employed so you can imagine how I hate sinking into debt while not employed. My husband keeps reminding me that I need to chill out and focus on getting healthy. I just feel like my brain is fogging over and the longer that I’m away from work the more stupid I’m becoming. I’m proud of myself because I have resisted the urge to follow the help wanted ads. Dang now that I brought it up I really want to see what’s available. I wouldn’t be able to even sit at my desk yet so what am I thinking. I miss working, however, I know this time is short and I need to enjoy it.

I wanted to go to a motocross race this weekend but then I realized that even if I could handle the pain of sitting for an extended period of time, I’m still unable to bend my knee enough to sit in the colosseum seats. Then I start thinking that since I have all of this time off I can visit my kids. No can do because that requires flying and once again my knee isn’t going to bend and soon I’ll be starting radiation therapy Monday-Friday for 3-4 weeks. Shucks I so wish this stage of healing was over. 

I'm More Than PVNS

Twilight Zone. Let me wake up!!

Sitting here looking at the 6 inch incision on knee and wondering. What the F*** did I have them do to me. My knee wasn't hurting much just a minor ache and all of a sudden I'm told in a nonchalant way. " You're MRI states that you have Pigmented Villonodular Synovitis." replying, "oh, all right, thanks, bye." I gotta check this out. Typing into the computer P..I..G..M.. I had the worse time remembering the name of a disease that would become a central part of my life. I had even more difficulty visualizing the destructive process. It didn't hurt...I had them slice it open...now it hurts and I can't move around like I want to. Now phase two of the attack, radiation therapy. I'm not looking forward to driving into the city every day because I am already very fatigued. Not to mention my apprehension of the sort and long term side effects. In my gut I know that the pvns will just return if I don't have radiation. Even with radiation I know that there is still a good chance of it returning. Almost 4 weeks out and I'm really tired of hurting and not being able to do what I want. This disease scares me and today I feel overwhelmed due to non pvns events that happened this weekend.

My brother in-law is 29 and has been dating this 20 year old girl. I call her a girl because she has been sheltered from the world, still living at home, turns half her pay check over to her parents, very religious, only wears grey and black dresses below the knee, and has no real world experience that allows one to develop into an adult. The family just met this girl for the first time at Christmas. I thought she was a lovely girl who is exactly where she should be at 20 years of age, however much too young and different then Keith. My concern is that my brother in law didn't show his real personality when she was around. He kept scanning his speech and apologizing for things that he said.

Opposites may attract but they don't stay together and these two couldn't be more different.  He loves her because she is pure, righteous and pretty (a child). Two weeks later we're informed "guess what"....yep you guessed it. Miss perfect experienced an immaculate conception, so much for being pure. As if this wasn't enough to choke on, they plan to get married within the next few weeks. So far I have called everything that was going to happen up to this point. I hope I'm wrong on everything else. I really wanted to like her at Christmas but felt she was a horrible match for Keith (who seems to be happy about the baby). She seems nice enough and it's not that I disliked her at Christmas but her personality was flat and she seemed disinterested in what was going on. We have a family tradition of feeding the donkeys and since she is allergic to animals (another strike against her) my brother in law and her didn't participate. Between baby and marriage miss perfect just fell several rungs in my book.

This is why I'm angry: They both came to Christmas on false pretenses. She was a last minute add on and I believe we wouldn't have met her again this year if it wasn't for the pregnancy. They have been together and broke up a few times during the one year that they have been dating.  I wanted Keith to find a sister in law that I could relate to and as couples we could do things together when we visited each other. I knew Keith would have kids one day but this all seems like a guaranteed set up for failure and a lot of heart ache. There is no such thing as an oops pregnancy. If you don't take precautions you are planning to get pregnant. Don't tell  me "surprise." The marriage failure rate is appalling even in the best circumstances, but take two people who don't really know each other and introduce the stresses of a pregnancy and a rushed marriage... the deck is stacked against the long term survival of the family unit. In the mean time Aunts, uncle, grandmas, grandpas come to love this child only to be told at a later date " We're divorcing so you're no longer going to be a part of this child's life."  Just because 2 people can make a baby doesn't mean that they should be together, and don't make another mistake and rush into marriage. This whole subject has always made me angry. Now I'm force into accepting her and all of the changes that she is forcing onto the family dynamics. Now there will always be a baby tagging along and honestly that makes me feel sick to my stomach. Worse yet I have to become a fake so I don't cause any waves and that's not setting well with me at all.  I want my brother in law to be happy but why does he have to make me so miserable in the process.

I had my first child at 17 but I had been on my own for 1 1/2 years, my own apartment, car and a second business started and I was married before I got pregnant.  I can't emphasis strongly enough that "I don't want anything to do with babies!!" I don't like them, they aren't cute they actually look like old toothless men, nor are they a gift well maybe a Trojan gift...human babies are succubus's being totally dependent for years on someone caring for their every need. I have much better things to talk about than baby spit up, gas or how many times the kid poops.  To sit as a hostage in a room for hours pretending to enjoy hearing about all the new things their baby is doing, is cruel and unusual punishment. I understand parents must convince themselves that they like all of these awful things about babies in order to ensure survival of the species and to keep them from committing suicide. Parents please listen to me..no one else wants to know about those things and spit up is not cute. It's the kiss of death to honestly describe how a baby looks. If someone says they want to see all of your kids pictures beware because they only want to show off their own kids pictures. I thought my husband felt the same way about kids.  I know he doesn't want any (which isn't going to happen with me) but it scares me to see his unanticipated calm reaction, which makes him unrecognizable to me. The last time someone was unrecognizable to me...my entire world was destroyed. Peace out.

23 Days Post-Op, Sex After Knee Surgery

Pain level 2-3 overall with spikes of 4. Finally the stabbing and spasms have diminished. Most likely due to the Neurontin that I started taking a few days ago. I have to admit those sucked major time. So once again just the normal pain continues in which I can proudly shout out “I’m healing!!” My husband gets a chuckle out of that. Actually it’s my positive proclamation while in a dismal situation. I haven’t taken taken the 10 mg Oxycontin ER for a few days and I wait until evening to take a dose of Oxycodone 5mg which helps me rest better. My fashionable walking accessories have been discarded into the dark crevices of a closet. When I was high in the hospital I blinged them out with sparkling butterflies along with anything else I could reach from my hospital bed. 

Being a woman, having sex to me is experiencing a deep emotional bond with my husband. I have found that when I’m feeling overwhelmed by additional stresses of illness I need and desire sex even more than usual. Unfortunately his sexual desire goes in the toilet when he sees me hurting. I need the reassurance that I’m still beautiful and desired but more importantly it’s comforting at a time when I feel out of control of my situation. I know he is terrified of hurting me so It’s up to me to assure him that we will be careful, communicate and enjoy. 

I was ready to resume sex at 3 weeks post op but everyone is different. Please check with your doctor and let the person who had surgery gauge when they are ready to resume sex.  I was still trying to figure out the mechanics since mobility is so limited. When I was by myself I decided to lay, stand and bend in different positions to see which ones may be comfortable. I can only speak about having knee surgery. I found that I had total control and stability of my knee when standing facing the bed and bending over it allowing my spouse to enter from the posterior position. For me this is a very comfortable position that caused absolutely no pain and it didn’t require much energy. I later found these pictures for additional positions. 

3 Week Post-Op, Step Back

Pain level last night 5-6 was my worse night yet since being home. I stopped taking the time released narcotic and have continue with the fast acting and neurontin which is beginning to help with the stabbing pain and spasms.
I over did it in physical therapy and now both legs hurt. The drive by stabbings continued quite regularly all night as did the pain from my back (different issue). I woke up at 12:00 and tears were flowing down my face from the pain.  I didn't want to disturb my husband so I got up and rested the best that I could on the couch. Morning finally came around and I was totally exhausted and still in pain. I rested all day and was able to make Chicken Marsala, corn and salad for dinner tonight.

I have an appointment to see the radiology oncologist next Thursday.

3 Weeks Post-Op Begin Physical Therapy

Upper & lower L arthritis, upper R torn meniscus, lower R PVNS

Three Weeks Post-Op from an open total synovectomy and had my first physical therapy session today.

My pain scale is 3-4. I continue to elevate, ice and do my exercises. I've had to continue to take the narcotics plus I've added Neurontin for the drive by stabbing pain and muscle spasms.   The last few days have been tough due to the nerve pain but I know when I feel the nerve pain it means that I'm healing.  

I went to my first Physical Therapy session today.  I drove but it was only 3 miles away. The longer that I'm behind the wheel the more the pain increases so driving is still very limited. I think that I did a bit too much because now both legs hurt. Jason said my muscles have atrophied and we will be working on building them back up. We will also be working on my range of motion. I'll be going to PT 2 times a week for however long it takes to get function back in my knee. I need to do these exercises at least 2 times a day on the days I don't go into PT.  I don't know what the heck my surgeon was thinking when she said I should be able to return to a desk job in 2 weeks. She must have meant 2 weeks if I only had the arthroscopic part of surgery.