Vitamin D Deficiency and PVNS

(Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery that the mri was showing scar tissue and not pvns. After you have surgery the mris become more difficult to read accurately. After the 6 mo f/u mri I had two more mris done showing that the (false) pvns was remaining stable (unchanged) that was the clue that it was scar tissue and not pvns.

Having pvns I have become hyper aware of any pain or swelling that occurs in any of my joints. I’ve had rapidly recurring pvns in spite of radiation in my left knee with pain that seems out of proportion to the pvns along with my right knee beginning to swelling and be painful. I also started noticing other joints and muscles were aching along with severe fatigue. This resulted in other joints having mris which showed no pvns. I started thinking I was becoming a hypochondriac or at least a bit crazy but that wasn’t the case. 

Funny but not. I live in the sunshine state of Arizona and look pretty good for being 48 because I have always used sunscreen to protect my skin unknowingly blocking the rays that I needed to make vitamin D... resulting in a severe vitamin D deficiency. Keep using your sunscreen, however, be aware you may not be getting enough vit D from the sun and your diet especially if your lactose intolerant like myself, avoid milk and use sunscreen. 

The last few months I have been reading about research done on the cellular mechanisms of pvns. I then started to look further into the cellular mechanisms involved in vit D deficiencies which led me to this and many more related studies.

Low levels of Vitamin D are associated with increased incidence of many cancers. Vitamin D normalizes cell to cell communication, impacts uncontrolled cell growth and allows cells to differentiate into normal cells with a normal life cycle. “Breast cancer patients with suboptimal vitamin D levels were more likely to have tumors with more aggressive tumor profiles and worse prognostic markers” by Nalini Chilkov, L.Ac., O.M.D.

PVNS is not cancer but it is a tumor and I’m just wondering if having a severe vitamin D deficiency has had anything thing to do with the pvns recurring so quickly and aggressively in my knee in spite of surgery and radiation. I have seen many people with multiple joint complaints that turned out not to be pvns related yet not seem to have an explanation so I decided to share this information as food for thought. I will write more on this subject as I 
continue my research.

I am not a physician and the above is in no way to be taken as medical advise. This is my interpretation of what I have been told by my physicians and from what I have read. Always consult with a professional for case specific accurate information.

PVNS Questions to Ask Your Doctor

Questions to Ask at  your PVND Doctors Appointment:

• What type of experience do you have with PVNS? diffuse, nodular, open/arthro, clinical trials
• What type of PVNS do I have? diffuse, nodular, mixed, intra-articular, extra-articular
• When will biopsy be taken, how long for the results and will surgery be done at that time? 
• How has this disease affected my joint? what damage is the mri showing if any?
• What are my treatment choices and which is the best treatment for this type of PVNS?
• Do you prefer open vs arthroscopic surgery and why? How many have you done? Outcomes?
• Will I be given a nerve block along with general anesthesia?
• Do you use staples or sutures to close the incision and why?
• Knee joint: will a continuous passive movement machine be available after surgery? 
• How long will I be in the hospital?
• What will I be given for pain management?
• When will I begin physical therapy and for how long?
• Will I need crutches or any other equipment after surgery?
• When will I be able to return to work and normal activities?
• What are the risks of delaying or opting out of surgery?
• What will your long term follow up plan for monitoring the PVNS be? Check ups/MRIs
• Are there any complementary or alternative therapies that I should consider? radiation internal/external, chemo, cryotherapy, homeopathic?
• What are the risks and possible side effects of each treatment including long term effects?
• Are there any clinical trials that would be appropriate for me?
• Do you recommend any herbs or other supplements- such as fish oil or glucosamine?
• What should I do if my symptom worsen?
• What can I do to decrease the discomfort?
• What can I do to preserve my joint?
• What kind of out-of pocket expenses can I expect; are payment plans available?

PVNS Estimated Time Of Recovery 2

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

SUMMARY OF PVNS

Current Status: 04/25/2013

• Remission since first surgery 12/2011, Partial knee replacement 02/2013, 95% normal, no swelling, pain free

Type of PVNS: 

• Diffuse PVNS, Bakers Cyst of left knee

Surgeons:

• Dr. Amelia DeComas, orth oncologist, PVNS specialist, Core Institute, Phoenix, AZ.,  http://www.thecoreinstitute.com/physicians/amalia-de-comas-md.html
• Dr. John Brown, Sport Medicine/ ortho surgeon, Partial knee replacement/minimal invasive procedure, Sun City, AZ. http://www.thecoreinstitute.com/patient-and-visitor-information/sports-medicine-program/sports-medicine-physicians/john-a-brown-md.html

Diagnosis: 

• 11/2011 per MRI

Surgeries: 

• 12/14/2011, open, frontal synovectomy of left knee
• 04/18/2012, 18 weeks post op. Manipulation Under Anesthesia
• 12/14/2012 Arthroscopic knee surgery (out pt) for possible recurrent pvns, lateral and medial meniscus repair and to address the catching and pain. PVNS recurrence, per MRI, proven wrong; it was scar tissue, need replacement
• 02/07/2013 Minimally invasive, quadricep sparing, partial knee replacement; using the Arthrosurface HemiCAP wave system. PVNS remains in remission

MRI: 

• 11/2011 Initial MRI showing diffuse PVNS in left knee, Bakers Cyst, effusion
• 06/14/2012, 6 mo. f/u- recurrence (false positive)
• 09/28/2012, 9 month f/u, pvns stable (false positive) 
• 12/10/2012, 11 1/2 mo f/u, pvns stable (false positive), Bakers cyst gone

Physical Therapy: 

• 3 weeks post surgery; started

Adjuvant Treatment:

• External Radiation Therapy: 7 weeks post op. 18 treatments, 200 greys each.
• Steroid Injections: 06/28/2012. (unsuccessful)

Detailed Time Line:

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 managing a physicians office, if not for the up coming 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.{Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery  12/14/2012that the mri was showing scar tissue and not pvns. After you have surgery the mris become more difficult to read accurately. After the 6 mo f/u mri I had two more mris done showing that the (false) pvns was remaining stable (unchanged) that was the clue that it was scar tissue and not pvns.}
My good knee continues to be swollen and painful mri showed no pvns but it does show chondromalacia and a small effusion.  In pvns knee constant dull pain level 5-7, diffuse swelling, 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 especially if you are menapausal. I'm unable to have the Cortisone shots again due to the reaction. In the end I only had 6 weeks of good pain control and 8-10 weeks of moderate pain control from the injections. The shots are very expensive and in my case totally not worth the expense and side effects.

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, flow, nuclear study and cystoscopy all came back normal. 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 at the same time.

08/21/2012 appointment with new primary care doctor. Diagnosed high cholesterol, low vitamin D, post menopausal. Wow isn't that all a slap in the face and I actually thought I was in good shape for 48

08/29/2012 neurologist appointment, dx primary peripheral axon loss polyneuropathy, brain mri normal.

09/12/2012, 11 weeks post bilateral steroid injections, ROM normal w/o swelling, pain level 4-5 in pvns knee and continue to get that crushing sledgehammer feeling intermittently, pain level 2 in non pvns knee. 

. 

09/20/2012  Two hour appointment with arthritis specialist, 12 vials of blood and very thorough exam

09/28/2012 Nine month f/u mri showing pvns stable, saw PA for Dr DeComas f/u

10/01/2012, 4 month post bilateral knee steroid injections, positive effects totally worn off. Pain 5-7 in pvns knee probably due to tendonopathy and bakers cyst pressing on nerves. Non pvns knee pain level 3. appointment with immunologist today, allergy testing done, immune system checked 11 vials. Increased vit d to 50,000 IU 3x week and given allergy medicine. 

11/04/2012 Returned to physical therapy due to muscle weakness and balance problems from polyneuropathy. Left knee is giving way and locking is making my leg swing way out during strides. Bupivicaine was taken out of pain pump 1 wk ago, now burning back radiating to bilateral legs. Pain 4 in pvns knee, Right knee 2, burning back, legs 6.

11/20/2012 Returned to PCP, cholesterol and blood sugar levels are all within normal levels now since changing diet and increasing activity.

11/29/2012 Pain Pump increase 20%, Bupivicaine put back into pain pump with pump fill. Burning in back and legs has decreased to a 2.

12/10/2012 Follow up mri 11 1/2 mo, showing pvns stable. I can no longer take a normal stride due to catching in my joint which is causing my hip to hurt and the knee pain is increasing. If I bend my knee while sleeping I wake up in pain. Pain is 6-7, Right knee 2,  0% swelling and great ROM

12/14/2012 Arthroscopic knee surgery (out pt) for possible recurrent pvns, lateral and medial meniscus repair and to address the catching and pain. Exactly one year ago to the date I had open synovectomy on the same knee.{Correction 02/13/2013): 6 mo f/u MRI 06/2012 showed a false pvns recurrence. It was proven during f/u surgery 12/14/2012that the mri was showing scar tissue and not pvns. After you have surgery the mris become more difficult to read accurately. After the 6 mo f/u mri I had two more mris done showing that the (false) pvns was remaining stable (unchanged) that was the clue that it was scar tissue and not pvns.} No PVNS, repaired meniscus, cleaned up joint, Patello-femoral joint is bone on bone and I will need a knee replacement. Drove car and began PT day 3, Pain steady 4, is a decrease since meniscus repair. ROM 109 after couple weeks of rehab. Used crutches one day. Could have returned to my desk job at 4 weeks but 6 weeks would have been better.


02/07/2013 Minimally invasive quadricep sparing partial knee replacement using the Arthrosurface HemiCAP wave system. Overnight hospital stay with femoral block. Should have stayed 2 nights due to pain when block wore off. Day one/surgery, no drain, ROM 118, walked in hall with PT,  Day two ROM 90, 10 mg oxcycodone q 4 hours, 2 crutches, evening Pain 9+ sobbing, meds adjusted 20 mg q 4 hours, minimal swelling, pain under control in 6 hrs, Day three 15 mg oxcy q 4-6 hrs,1 crutch,  Day four 10 mg oxcy 2 times,no crutches/ was supposed to start PT, Day five, PT begins, 10 mg oxcy 1 time. 1 week, CPM 6 hrs day 110 degrees, no restrictions. Knee moves smoothly and no longer hurts with every movement.


02/23/2013 Two weeks post partial knee replacement. ROM 114, Pain 0, Tightness and very mild aches from surgery, drove car to have staples removed on day 11, continue to use the cpm a couple hours each day, Day 12 began PT, Using both legs to ascend and descend stairs, no noticeable swelling, energy remains low but improving everyday, not ready yet to return to work but I'm beginning to look. 

03/21/2013 Six weeks post partial knee replacement. ROM 118. 4 1/2 wks post op was a passenger on crotch rocket = no discomfort. Pain 0-mild aching minimal activity, 3 from mild swelling(walking 3 miles) full returned to activities except jogging and kneeling which doc wants me to wait until 3 mo post op. Energy hasn't returned yet. I would be ready to return to office work at this point if not for other issues. Extremely pleased with this procedure. Knee feels like better then my biological knee. Severe bone on bone nerve pain 0% gone immediately post op. 

07/01/2013 Time to call the surgeon and have her order my 6 month follow up MRI. Keeping my fingers crossed for good results. An update on my PVNS knee; It's been 6 months since my partial knee replacement and I'm doing wonderful. Little to no pain, 2 on the pain scale if slight swelling is present. Range of motion is normal and I don't think about my knee unless I need to kneel down, in which case I am extremely careful and put little pressure on it. My PVNS leg is still a little weak so I'm still careful on the stairs. The quadricep muscle still tightens up and aches, since open synovectomy.  

08/13/2014 Update: I remain nearly three years PVNS Free. MRI in December is now showing extensive chondromalacia (arthritis) in the medial and lateral aspects of my knee, less than a year after the partial replacement was done. This is disappointing since I will require a revision of my partial replacement into a total knee replacement in the near future. I suspect the having the pvns and or the radiation therapy may be playing a role in accelerating cartilage destruction, since I had no signs of arthritis prior to the synovectomy in December of 2011.