PVNS,1/2 way Through with Radiation Treatment Side Effects

Radiation treatment is proceeding well. It's Monday morning and I just received my 9th treatment...only 12 more remaining. I'm beginning to feel the cumulative effects. There is slight swelling, stiffness and it feels like someone has bashed my knee with a hammer. The new sensation that I'm feeling is a slight burning and the skin is becoming quite sensitive. The pain level remains 2-3 and I continue to elevate and ice my knee which helps. The fatigue continues to worsen but I am learning that I just need to push through it and remain as active as possible. If I sit over a half an hour my knee stiffens up and becomes quite painful. My range of motion in the knee remains at 84% which is what it was on February 7th prior to starting RT. At least I haven't lost and range of motion.

This whole PVNS journey has been quite challenging. The thought keeps crossing my mind "will my knee ever feel normal again and will my range of motion return?" Surgery on any joint frightens me because I know from experience that once a joint is disrupted by surgery it is never the same. The damage continues to cumulate with each surgery. It's a mental game of keeping your attitude in check and not having too many pity parties.

6 out of 20 Sessions Radiation Therapy

Feels like I'm at deaths door.

It's now 12:30 a.m. and I'm still away from the pain. I saw the radiation doctor today and was told I would be seeing her once a week until the end of treatment. I saw pictures of how they painted the 3D image of my knee to differential what areas and how much radiation would be given. It was kind of neat to see exactly what areas are getting zapped. I told him that I'm experiencing fatigue, swelling of the knee and increased pain from the treatment. He said that all of that was normal. I asked how the radiation helped and he explained that healthy cells have a much greater ability to regenerate compared to the proliferating cells (the bad ones). Essentially they sterilize the DNA in the unhealthy cells so they can't reproduce. I also asked why so much pain. He explained that each time I receive RT it's causing tissue damage which is an injury and it accumulates with each RT which causes swelling and pain just like surgery. It takes my body a lot of energy to repair the damage and that can be the cause for the fatigue. Since I wasn't feeling well prior to RT the fatigue and all of my other symptoms are exponentiated and it's kicking my butt. So another night of not sleeping well due to pain but I can't take more pain medication because right now it's making me feel ill. I'm putting to use every mental skill that I have in order to keep smiling through each day. I hate for Steve to see me cry but sometimes I hurt so bad the tears just run down my cheeks. He is so sweet and supportive but I feel like a bum not working...It's just not a good feeling.

PVNS Radiation Therapy Procedure and Room

This is the room in which I receive my treatments in and the blue device is the mold that they made to immobilize me knee during therapy. I received my 4th radiation treatment out of 20 today. After 3 treatments I've been set back 2 weeks in recovery. I'll get my range of motion measured again tomorrow. Crossing my fingers I haven't lost much range since it's not fabulous to begin with. I'm also feeling even more fatigued even though I was hoping it wouldn't have that effect. My pain levels are at a pretty steady 3 and I rarely have to take any medication. The worse part is having to drive downtown during rush hour every day. That in itself wears me out.

I lay on the table and place my left leg into the mold and then the techs line up the green lasers and match them with my tattoos. The overhanging pert of the machine rotates to the left, they put a filter on the machine (a sliding plate that helps to direct the radiation) they then exit. The steady high pitched beep blares when I'm being radiated and lasts about 1 1/2 minutes. Then the it rotates to the top, beeps then rotates to the right side and beeps. I lay there thinking my cells are getting destroyed and I'm just laying here. There is something that feels real wrong about the whole process. I'm scared to death that a muscle will spasm and cause a slight motion spraying the radiation all over. Of course that doesn't happen but it's still a fear. Then I get up and tell the gals "see you tomorrow same place same time I'll bring the drinks from the lobby."

7 Weeks Post-Op, Range at 84 Degrees

I thought radiation therapy would be simple but it's much more involved then I had imagined. I had my first appointment with the radiology oncologist three weeks ago. At that time it was decided that Rt would be a god choice for me. I was told that they could decrease my chances of recurrance from 40% down to 10-20%. "Sold!" Then I had to wait a week for my insurance to give approval. Tick tick tick, time is a wasting. Another week just to get my CT, tattoo and the mold to hold my knee so they could line me up in the exact same position every time. Then of course another week trying to get my mri done. First appointment oops you need the steroid prep. Second appointment the wrong knee was scanned. Third appointment was cancelled due to a reaction to the prep and finally my fourth appointment was successful. Today is my final set up appointment prior to actually getting the RT. In the end they decided not to use the gadalinium.  They where able to get the pictures without it. My final appointment before radiation therapy.Pain level has spiked to 3-4 in the knee and the last 2 weeks my good knee has been hurting on the medial side. I’m sure that’s it’s just due to my gait being off but it’s normal to wonder if pvns is in other joints when they start hurting. It’s sad to say but I’m not sure which knee hurts worse. I continue to be more and more active and I’m sure that’s adding to the swelling and discomfort.

I finally saw my pain management doctor and went over the mri results. There is bulging out of the majority of my discs, cord flattening and a couple tears in the lamina a lot of degenerative changes. The doc asked “what type of stuff have you done in your life?” “We see this kind of spine in horseback riders (rodeo) and jumpers. Yup I’ve done dressage (dancing horses to music) and occasionally jumped horses but no rodeo. She said that nothing jumps out as the culprit of the back pain but any of it could be irritating the surrounding tissue causing pain but she honestly doesn’t know. She offered a couple choices. She increased my Baclophen pump meds by 40% today and told me to call if that doesn’t help and she will increase the Bupivicain when I get my pump filled in a month. She also offered epidural shots if this doesn’t work. After my sleepless night due to pain at least I feel like there may be some hope of not constant being in pain, She seemed more concerned about my chest CT then anything else. “You know what this said, right? and when is the next CT?” It’s unsettling to know that there is something in your lungs, developing and involving lymph nodes and you just have to wait until it is developed enough to be diagnosed or it will disappear, Two more months until my next chest CT until then my plate is full and I have to concentrate on swallowing the morsels before me, without choking.

i spoke with my primary physician and he completely understood why I am switching to a new doctor. Being an hour away is causing me not to see the doctor when I need to see him most. I’m anxious about meeting a new primary care physician today, since my medical history is so long and complicated. I hope that he will be able to figure out why I am feeling so horrible. I know that they need to check my hormones and adrenal gland function since my other blood work has come back good. I hate to even think it but I am 47 and had a hysterectomy which can cause menopause to begin earlier then usual.

I found this article about how they paint the area in which the radiation is going to treat. http://www.hyscience.com/archives/2005/11/sensors_a_smart.php  IMRT developed about 10-years ago, works by 'painting' small areas of different intensity radiation over the tumour. It involves the use of a servo-controlled device called a multi-leaf collimator, that has about eighty "moving fingers" that can "allow or stop" the radiation from the treatment machine reaching the patient. It's precise control allows a three dimensional pattern of dose to be scaled up. By painting the dose distribution in this manner, a high tumour-killing radiation dose is conformed to the tumour while an acceptably low and safe radiation dose goes to the surrounding tissues and vital organs. This is very different from conventional radiotherapy in which no such painting is done and the high dose can extend beyond the tumour and damage healthy tissue.Intensity Modulated Radiotherapy (IMRT), is a radiation therapy for cancers that improves clinical outcomes by a providing more accurate targeting of tumours then with standard radiotherapy, and minimising the amount of radiation absorbed by healthy tissues. The good news about IMRT is that it results in patients only receiving a high radiation dose where they need it, thereby preserving healthy tissues. 

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.