Can I get a referral please? PLEASE!

I don't know why I have to feel like I need to be pleasant when I am so frustrated with the lack of response.  Here's the story.  My last surgery was not good.  I had a time limit given which seemed odd, the surgeon didn't tell me anything about my condition, and he didn't even show me images of the MRI or anything.  He left me confused but at least I could walk again.  Fast forward to now.  I can feel the tumor growing back.  I still don't know if I had localized or diffused or both.  The surgeon never bothered to tell me.  We agreed he doesn't need to do the next surgery.  Neither of us are interested in working together.   I started shopping for other surgeons. 

Along the way, my family doctor who has to orchestrate the referral process retired.  I got a new doctor a few months ago and filled him in on my plan to find another surgeon.  We searched Google and found one that might be able to perform the surgery I need.  I got a referral in the mail but it was for the first surgeon who performed the first surgery.  I called the doctors office and asked for the correct referral.  I got one for a doctor that is 40 miles away and it was not the doctor we found on Google.   I called the doctors office back to ask why I still haven't received a referral for the surgeon that my new doctor found on Google.  I left a message.  I left another message a few days later.  Finally I went to the clinic because nobody was returning my calls.

The doctors office informed me that they were limited to their "in network" surgeons and that I would need to exhaust all options before I could get a referral to an "out of network" surgeon.  They have 33 surgeons in their network.  Most of who are over 30 miles away from my home.  The clinic explained that I would need to call the insurance company to get an approval from them to go outside of the network.  So I called and the one person I need to speak to was out of the office for a few days.  I asked to leave a message for her to call me back.  A week passed and no call was returned.   Not sure why it's so difficult for people to return calls.  I called again today and left yet another message.  Won't be able to go to their office to demand service so now I'm stuck waiting more.  Meanwhile I'm having issues walking and eventually will need to have another surgery.  Hopefully sooner than later.  But with waiting for people to call me back, it seems to be later than I would like.

Pain Management

I'm horrified that doctors continue to prescribe awful pain medications like oxycontin, oxycodone, vicotin and any other derivative of heroin.  Even after your surgery is long over.  Yes, those are all pretty much heroin.  Legal heroin.  If you have addict genes in your family, you should stop taking those 2 weeks after surgery.   Otherwise you could find yourself on the streets doing things you thought you would never do while leaving your family and your life behind.  I am not kidding.

Of course people would like to have an alternative to dangerous highly addictive drugs to help manage the pain.  Unless you crave those drugs.  Then, please find an alternative method immediately as you are probably already an addict or an unsuspecting addict.  Those drugs just numb or hide the pain.   They don't rid your body of the pain.  I won't go into an entire scientific explanation about how pain and the brain work.  But this post is about finding alternatives for managing pain.  I have found what works for me seems to also work for others that I have suggested they try these alternatives.   I could be repeating myself but it bears repeating.  Try these:

Ice
Arnica Montana
Asperin
Ibuprophen (for swelling)
Tumeric (also for swelling)
Castor Oil Packs with a heating pad for 30 mintutes
Acupuncture

Now some people say Epsom salts help while others say they make the pain worse.
So I say, try them.  It won't hurt to try.  Ok, maybe the hot bath with Epsom salts could.
But all are worth trying. And these don't have to just be remedies for PVNS.  These have helped for broken bones in my family.  And they are all safer than the heroin varieties.

Another suggestion is to not just get the good old doctors opinion.  Look for alternative healthcare practitioners.  People like naturopaths, nutritionists, acupuncturists, and especially Chinese herbalists.  They seem to have magic herbs in China.  Some of the herbs I have taken are quite remarkable.

If you know of any pain management methods or practitioners that are not "western medical doctors" then please share your experiences in the comments below for others to read.  I think this topic is very important. 

The American Health System is the equivalent of Alice having tea with the Mad Hatter

My family doctor retired.  That was a tragedy.  Nobody knew my struggles as well as my doctor and more importantly, his staff.  His front desk staff was epic in getting the correct paperwork to where it needed to go and in short time.  Now that he is gone and nobody stepped up to take on his patient load, we all scattered into the wind.  I found a doctor who was new to his practice, I quickly made an appointment and filled him into my situation.  I announced that I needed a surgeon that knows how to perform surgery on PVNS that will do it willingly and not be a complete renegade about it.  Getting a simple answer is not such a simple process.  Just to ask a surgeon, "can you remove PVNS from my knee?" I have to go see my doctor, get a referral to a surgeon, go see the surgeon, ask the surgeon the question, and usually get told "no".  Then back to square one and onto the next surgeon on the list.  I get to go through this process over and over with no end in sight.  This is because PVNS is still so unknown that not many surgeons have performed surgery on it and therefore I will not allow myself to trust a surgeon who has no idea what they are dealing with.  I'm not looking to be an experimental subject. 

Another doctor said they could call around for me so I had an appointment and explained my entire PVNS story only to get an email that a referral would be sent to the surgeon of my choice. That's not exactly what I had in mind so I had to go back to the new guy.  The problem is that over 3 weeks ago I was supposed to go through this referral process with a surgeon that my new doctor found on google search.  Only, the referral that came in the mail was for the first surgeon I saw who told me he would send me to someone who would "cut me up good".  No thanks creepy surgeon guy.   So I asked the referral to be fixed.   Another week went by and I called to get an update, I was left on hold.  I called back and asked for my call to be returned.  Since I didn't get a response, I called again last week and again asked for another message be left for the referral clerk to call me back.  Since another week went by without a response, I went to the office and demanded to get an answer.  I told them I was going to rant but I just need to have communication.  They told me there were even more hoops to jump through before I could even start going through "out of network" referrals to surgeons of my choice.  They showed me a name I never saw before.  So my choices are to go see the mystery doctor or to call the insurance company and see if I can get someone track down a surgeon for me.  If that is possible.  Or I beg them to let me find a doctor who knows what they are doing.

So I'm feeling very upset about the lack of communication, the inability to feel that I can trust the staff of my new doctor, the system in general, and the fact that I still have no idea who can remove the tumors that keep growing in my knee. I'm pretty sure that I'm stressing out over all of this nonsense and causing even more health problems.

Finding a doctor for PVNS

My family doctor who has to write the referral to see a surgeon has retired so I had to find a new doctor to write referrals.  He is new all right.  I told the new family doctor that I would pretty much be telling him what to do since he has never seen PVNS before.  We didn't know who I could see so he looked up "PVNS surgeons in Seattle" and up pops a guy I had never heard of before.  The family doctor said to go ahead and make an appointment and I can see him.  I do that and the PVNS surgeon's office said first I need the referral.  So now I have to call the family doctor to get the referral because I already got one in the wrong doctors name.  It would be nice if I could just call the surgeon and ask if he can even do this surgery.  I have no idea.  So I have to go through this process over and over until I find the right surgeon.  I have heard stories of people getting their leg cut off because the doctor thought it was cancer or not knowing what it was and sewing the patient back up without removing any of the tumors.  Surgery is not something I'm going to let just any doctor do to me.  I will not get surgery again unless I trust the doctor and if I have to be completely crippled during the wait, so be it.

Starting from scratch

My family doctor has retired and I have not found a new doctor to replace him.  I'm subjected to only use doctors that are approved by Medicaid which I'm still on for the time being.  So my next step is to find a doctor in my neighborhood that will understand the complexity of my situation and will be easy to work with in regards to my referrals that I need.  For MRIs and surgery. But more importantly is their front desk staff.  They must be competent. I do not believe that to be a high expectation.  So next week I will be interviewing the front desk staff of a few doctors offices.

Meanwhile I am having pain and feeling that using a cane is in the near future.

Eat worms

Have you ever heard the saying "nobody likes me, everybody hates me, I guess I will go eat worms"?  That's how the new doctor made me feel when I saw him yesterday.  I had heard about him through the internet that HE was the guy to see to get the PVNS out of my knee since the previous surgeon said he didn't want to perform another surgery on me.

Dr. C (the new doctor) said he talked to Dr. F about me and that neither of them wanted to perform the surgery.  I informed Dr. C he was only backup to Dr. W who moved to San Diego.  Dr. C got excited to tell me that Dr. W has returned and kept bringing that up.  Why can't he just straight up say, "I don't want to do the surgery on you, move along."

So my game plan now is to wait.  I will get another MRI at the end of the year to see where things are.  Since November of 2014 I had a 2cm sized tumor in my right knee.  Dr. F never told me anything, never showed me the MRI video, and has left me wondering about my condition.  At least Dr. C showed me the video and explained things to me.

Sounds like I need to track down Dr. W.

Navigating American Health Care

In June of 2013 I had surgery to remove the tumors in my right knee.  The surgeon made it very difficult to see him.  First his office said he was not accepting any new patients and then changed it to they weren't taking any patients for another 3 months.  This of course wasn't going to be acceptable since I was losing mobility at a rapid pace.  I called my family doctor who had referred me to the surgeon and complained about the lenght of time I needed to wait.  I got a call soon after saying they could see me the following week.  Oh how interesting.

I then was told at the time I finally was able to schedule my first surgery that I would be out by 11:30am and needed to arrange someone to pick me up.  I thought, "Odd. I have never heard of a time limit for surgery before."  But they assured me that was plenty of time to carefully remove the large PVNS tumors that had been growing for at least 10 years. 

The recovery was not as rapid as I had hoped and I couldn't shake the time limit factor.  Especially since at my post op appointment the surgeon commented about my largest tumor being so large and calcified that he had to chisel it out of my knee.  I thought, "Then how in the world did he have enough time to get all of the PVNS out?"   But the surgeon isn't great at answering my questions.  A little reminiscent of Korben Dallas being interviewed by Ruby Rhod in the movie The Fifth Element.  Not a lot of content in his answers.

So when I started noticing a tightening of my knee in the last year I knew something was going on.  Something wrong.  I asked for another MRI.  I knew that the surgeon would need it to include contrast but as I handed the referral to the MRI people I noticed "contrast" was not checked.  I told them I would not be going in that machine without it as the last time they kept me in there for 45 minutes and my surgeon said he needed the contrast in order to detect the PVNS.  So with my quick thinking they were able to get the approval for the contrast.  Otherwise I would have had to start the entire process of getting an MRI over again.

Sure enough the images came back positive for PVNS.  But the most disturbing line on the report was, "lesion is slightly larger than the previous MRI" which was taken before surgery.  Clearly an entire tumor was left in my knee with no attempt to remove it because I'm sure he ran out of time.

I went on Facebooks "PVNS is Pants" page and asked the community to suggest another surgeon.  Several people suggested Dr. Christopher Cannon.  But when I called his office I was told he did not accept my insurance.  I went back to see the first surgeon, Dr. K. Fujisaki.  We agreed to wait on surgery.  However, lately my knee is hurting constantly to the point that I'm losing sleep at night.   I figured that I better start whatever process it is to get to see the doctor of my choice.

I called Dr. Cannons office last week and told them I would be willing to change insurance companies in order to see Dr. Cannon.  I was told that Dr. Cannon is not seeing any new patients.  I refused to take no for an answer since my first experiences suggested that no doesn't really mean no.  So I kept asking how, how, how and what do I need to do to make it happen because he is the only surgeon I'm willing to see at this point and my condition is so rare it is too difficult to find an alternative.  Sure enough they consented and told me to have my current doctor send over all of my information. 

I called my family doctor (who is retiring in a few months so I'm ok with jumping the insurance ship) and was told that I can't just ask for my info to be sent to Dr. Cannons office.  I had to make an appointment. 

I predict that I will not be getting any actual surgery until after the summer is over.  If I'm lucky.

Too much salt

I saw something pop up on a social media news-feed about highly processed foods cause autoimmune diseases which I assume PVNS is.  I looked up causes of autoimmune and this subject came up the most.  I read through the various sources and out of them all this seems the most legit.  I trust Yale.  I've been operated on by awesome doctors who have graduated from Yale.  And if just a higher salt intake can wreck havoc on your system I have to assume processed sugars and carbohydrates are just as bad, if not worse.  I admit I eat all of that more often than I should.  It's difficult for me because I'm surrounded by it.  I try to fresh foods that you can get out of a garden as much as possible but there are times, a lot of times where I'm presented with a bread of some sort.  Or a cookie.  It's hard to say no to a cookie.  I need to stop eating cookies.

http://medicine.yale.edu/news/article.aspx?id=4940

Rare Disease Day 2/28

PVNS sufferers have their own day to make this disease known to those who don't know.  Which are still many.  Especially doctors who need to know about it.
It's still so unknown that the Rare Disease Day organization as of today doesn't even recognize PVNS as a rare disease.  I'm sure that will change soon.
As more people with PVNS get diagnosed, there will be those so frustrated with a lack of information about the disease they will create new lines of communication to bring it to the awareness of those who need to know about it.
We share a similar fate as many others around the world, many who suffer from disabilities.  And we have no idea they are even suffering.

http://www.rarediseaseday.org/article/watch-and-share-the-official-rare-disease-day-2015-video

Clinical Trials for PVNS

My take on PVNS clinical trials, NO WAY.
For others this might be worth it if you have fast growing PVNS, pain associated with PVNS, or swelling that just won't stop.
Thankfully I don't have much going on other than my knee cracking or popping and the discomfort of having PVNS in my knee.
But I refuse to be a guinea pig/lab rat to determine if a pill "might" slow down the growth.
That was the entire purpose of this blog, to try something different, something natural.
I still haven't been able to stick to a rigid diet or consistently see an acupuncturist but I'm working on it.  Slowly but surely.
But if you are in America and ever watch any television (which is pretty rare for me), there are usually commercials promoting medications that have a long list of horrible side effects, including death.  I'm a little weary of trying a "new drug".
I will stick to the natural stuff.

Frankensense
Tumeric
Acupuncture
Better Diet

Autoimmunity and PVNS

Several sufferers of PVNS can attest that they don't just suffer from PVNS. Some have thyroid or at times other rare autoimmune disorders.

In the past 3 years I have had 4 bouts of shingles. Each time in the same place (close to the PVNS located on my right knee). And each time it's worse.

I'm seriously considered getting a vaccine shot for it until I asked my doctor for a prescription.  He had a look of terror on his face and said those vaccines are hard to get approval for and are ONLY for people over 50.  I decided his reaction was disturbing enough I decided to pass on the vaccine. 

January Juice Challenge

Day 1 of the January Juice challenge. It helps to have a partner who not only helps me stay committed but who will do this challenge with me. That way I will be less likely to give into the temptation of other foods. I will eat salads or other vegan fare. I'm eliminating meat, dairy, and breads/carbs.  It will be difficult to give up sweets. I won't give up coffee. I drink it black so I don't have to worry about the sugar or cream issues there.  Today's smoothie has blueberries, raspberries, strawberries, and a protein boost. Mmm.