Revision day

December 31, 2013

I never expected to be having another surgery this soon! But here I am back at a hospital having another hip surgery. This makes 3 hip surgeries in the last 2 years and one shoulder surgery.

Today's surgery is a revision of my LTHR (left total hip replacement).

I checked in and waited with my son Dan and my friend Judy to be taken to the pre-op area. The pre op check in was essentially the same as when I had my shoulder done other than they were going to work on my hip. While we were getting all that stuff taken care of Doc popped in and said he had been thinking about me and the best way to do the revision and he suggested that rather than doing the surgery through a posterior incision which is what he had planned he wanted to attempt to do it via an anterior incision with the caveat that if he could not access everything he would have to flip me over and make a posterior incision as well. I agreed because I would much prefer the restrictions of the anterior incision to the restrictions of a posterior one.

So prepped and ready I was wheeled into the OR for the Anterior incision revision of my THR. Strangely I do not remember being placed onto the table for this or the first THR. . . interesting I just realized that... oh well.

I woke up in my room nauseated and throwing up... everyone assumes it was the anesthesia but I can do anesthesia with no problem when they are willing to listen to me and NOT give me antibiotics or narcotics that make me puke!

I really did not think the pain was too bad or moving around was too difficult this time since I knew what to expect and how to maneuver to get in and out of bed. The aides kept trying to lift my leg to help and I kept telling them "I've got it" ! 

Not much to tell about being in the hospital I have to say it is not that exciting. I slept, I ate, I made trips to the bathroom.The most entertaining thing that happened was on New Years day my surgeon made rounds and brought his boys who are 2 and 4 with him to the hospital. Such cutie pies they are apparently the hospital frowns on them accompanying him but he feels it perks up his patients. It was actually fun to see them.

I stayed in the hospital until the 3rd and was sent home in the midst of a snow storm. I was really worried about getting out of the car and walking in the snow up the walkway to the house on crutches.  I made it in with no problem and settled in to hibernate for a month.

Time flys and a Doc who was willing to listen to me!

It has been quite some time since I popped into Blogger and updated everyone on my progress.

As I mentioned the OS (Orthopedic Surgeon) I had for my scope and my hip replacement in 2012 sent me to get a 2nd opinion and that OS docs office was not useful and did absolutely nothing for me. I went to see the OS who did my shoulder surgery in August and asked him if he had a partner who did hips and could take a look at my hip issues. I ended up scheduling an appointment for 11/20/13. I was VERY impressed with this new guy and his staff. He listened carefully to my questions and concerns and even accepted the article that I had printed out regarding Illiopsoas impingement issues. He and his intern both asked me what my work experience was and were surprised when I told them I worked on equipment. They both commented that they were impressed because I sounded very knowledgeable I was about PVNS. The new guy agreed with doc #2 who wanted me to have an injection into the groin done under Xray. I agreed to give it a try.

Three days later I got a call from the hospital letting me know that I was on the schedule for an injection at the local hospital and the time I should appear the next day. Yes that is correct just 4 days after seeing OS#3 I was having the injection. I arrived at the hospital at the expected time with my mom as an escort. . . just in case I had my normal weird vaso vegal response to the injection. All went well and in less than an hour I was injected and sent on my way.

The goal of the injection was to hopefully to eliminate the pain by reducing the inflammation by injecting a steroid directly into the tendon sheath. If the steroid worked and my pain went away then it would be clear that the issue is not mechanical and there would be no need to proceed with a revision. If it did not help with in  a few days then it would be clear that the injection had failed. I waited 2 weeks and then placed a call to the doc's office to let them know there was no reduction in pain. Well nothing lasting any way. They used an anesthetic with the steroid so the first day I was somewhat pain free but by the next day it was back.

I received a call back from the office and an appointment was scheduled with the doc to discuss my options. In that appointment we agreed that it was time to get some relief to the pain and the only real option was to open up the hip and either cut the tendon or to do a revision. In my mind cutting the tendon was like placing a bandaide on a seeping wound but not finding why it was seeping. Not an answer to what is causing the problem. I told him I did not want that and we talked about the revision and what that would entail and how he would be doing it. I agreed to the plan and then discussed open dates with the scheduler.

So 12/31/13 was selected as the open date for surgery and I was grateful to get it in in this year since my deductable was long since met!

Random thoughts ~ How does one draw the lines on a Map?

Today I got fixated on the potential of the USA to crumble. Historically no political power has lasted much longer than 200 years and the USA is now a 237 year old democracy. What are the odds that it will remain in tact?

The trigger for this train of thought was a video I saw this morning of a 5 yr old genius who was being interviewed by Jimmy Kimmel. This young man can name every country and its capital and explain how and when the countries changed. Quite an amazing feat, I can barely keep the states in the USA straight let alone name all 196 countries of the world. Check him out...
https://www.facebook.com/photo.php?v=1482063415351549&set=vb.452811378126236&type=2&theater  Jimmy quizzes this boy on different countries in hopes to trip him up and Arden quickly proves that he is just that good. So one of the countries used to be Yugoslavia which is now been broken into 7 different countries Slovenia, Croatia, Bosnia Herzegovina, Macedonia, Montenegro, Kosovo and he could name where and when it all changes. 

What is holding the USA together? The discontent and vitriol that is coming out this year in the political battles makes me wonder if a break up of the USA is imminent. As each side draws the battle lines and refuses to give an inch it proves yet again that inflexibility is the down fall of countries and political powers.


The shear size of the USA leads one to suspect that ruling such a large piece of property is unmanageable.  Maybe if it ever splits up we could ship all people with the same political beliefs to the same location. Ultra right wingers here... moderates here.... centrists here... moderate liberals here... ultra left wing here.... dividing the country yet again.

Sadly the people don't think for themselves and are totally yanked around by the strings of the media puppet masters. I think people need to make the effort to hear all sides and not just focus on the programming that supports their political bent. I personally find it difficult to tune into a conservative show and really struggle not to open my mouth and shout at the TV when I am in a room full of people who are believing what is being said.

It is easier said than done to be open minded when the media outlets in the USA cater to one side or the other and even though many claim to be "fair and balanced" reporting it is obvious that they have an agenda. This is why I turn to news from the BBC to get an opinion with no political leaning. . . at least in regard to the USA, it is possible that they do show a particular leaning in the UK in regards to their political structure.

Any way. . .

Where was I ... maps and recreating the world. I am curious to see how this experiment of democracy will play out. If one were to believe Ayn Rand in Atlas Shrugged the socialists come in and steal from the capitalists and ruin America. Many people feel that this is the way the Democratic party is heading and  we are on a course to prove her story true. Where will we be if this occurs. .  . Will USA break apart into smaller countries like Russia did? Will the South rebel again and start another civil war?

I for one have no predictions as to where we are heading and I am tired of all the angry people in Washington who shut down the government in an effort to get their way with NO thought to how it will affect the people of the country. They congress in general and John Boehner in particular are acting like bullies in the school yard and their antics are putting a black eye on the USA and the government.

Frustration

I am getting so frustrated with the hip issues I am still having after having a LTHR last December. I am having intense groin pain and some milder outer thigh pain. I actually had to get the cane out the other day and start using it again.

And to top everything off my normal OS refuses to see me now. He suggested a month or more ago that I go see another doc for a second opinion and now they are not willing to see me. I followed his advice because I know that the PVNS may or may not have returned and it never hurts to get advice from someone else. The lady who scheduled the appointment said that I should bring my surgical reports for both my hip surgeries and any Xrays or MRI's that I have had done.

I saw the new doc on 10/9 and he was nice and listened attentively to what I had to say. He did not EVER ask to see the films even though I told him I had them ready for him to look at. So frustrating!!! He did say that he would be in contact with my normal OS and they were tag teaming for my treatment.
The day of the visit he came to the conclusion that my pain was Illiopsoas tendonitis and Bursitis and he injected the Bursa while I was there with .9cc of anesthetic and .1 cc of Kenalog. He said that if it did not help they would schedule me for a series of  injections along the groin which would be done under Xray.

So of course that wee bitty amount of steroid did nothing and I called and scheduled the injection for 10/18. When I arrived and was taken to the treatment room they had an ultrasound machine sitting there and 1 needle/syringe. When I questioned the nurse I was told that was how they did the "deep injections." I know damn good and well that a deep injection is used when they inject steroids directly into the hip joint. And since I have an implant there was no way I was letting them try it that way. The nurse went and got the PA who was scheduled to do the injection and he came in and listened to my concerns and said that since this was not what I was told was being done they would call the doc's scheduler and get it rescheduled. We walked straight to the desk together and he explained to the woman there what we needed which she clearly conveyed to the doc's scheduler/nurse.

This has been so frustrating because they have now had 3 weeks to get it scheduled and still nothing. I called last week and spoke to the scheduler/nurse and explained again what was going on and why I did not have the injection. . . she said she would take care of things. I also emailed my normal OS's secretary and asked to have his PA call me back. When I spoke with her she concurred that doing the injections under xray was completely normal but they would first try the blind (no guidance) injection followed by the ultrasound guided and if they were unsuccessful they would do the Xray guided. I asked her which would provide the most visualization of the joint and any weird anatomy she sad that under Xray more could possibly be seen during the injection.

Today after not hearing back from the the "NEW" OS for a week I tried again and was told the doc and the PA had spoken and the PA had told the scheduler that everything was taken care of... and yet I have heard from NO ONE. I almost feel like NO ONE cares! I think the injections which they are offering are a band aide and will not fix the problem and when just walking irritates it then there is nothing I can do to prevent this from continuing to happen!!!

Today I was researching Illiopsoas stretches for another THR patient who is having issues and I came across this article which I think totally explains what is wrong with my hip.
http://www.bjj.boneandjoint.org.uk/content/84-B/7/991.full.pdf
If I ever get in to see this guy again I am going to take this with me !!!!

Supposedly bone cement can be seen on Xray but to this point my Xrays look good and no one understands what is causing the issue. Interestingly in this article there were 2 patients who had the same symptoms as those who had cement rubbing but these 2 had no cement but had a fibrous growth on the muscle and once it was removed the pain went away.
I am hopeful that someday soon I will get them to listen to me!!!!
I know my body and I know that there is SOMETHING STILL WRONG WITH MY HIP!

In the meantime I found some good stretches for the Illiopsoas.
I am currently doing this first one and it helps but it also hurts. Don't let the pain stop you from continuing to move.
http://www.youtube.com/watch?v=5N6q0SMp3s4



Here is a video of a seated psoas stretch
http://www.youtube.com/watch?v=bgj6QtOVLVA


Here is a video of the massage style my physical therapist uses to release the psoas.
http://www.youtube.com/watch?v=IVEtXb3ijn4
 

Seriously can't we all just get along?

I am getting so sick of all the finger pointing and blame that is flying around these days. Yes the government has taken leave of their senses. Yes all the government operated places have been closed and people are out of work but blame will not solve this situation.

Sadly the people who made the decision to shut down the government are not the ones being affected on a daily basis by their ridiculous decision. The ones who are suffering are people who live paycheck to paycheck working for the government! Senators and Congressmen and the President are NOT suffering. They may be sitting in the hallowed halls arguing and wading in bullshit but they are still NOT suffering.

This constant bickering has had an overflow effect on social media and people are fighting to prove their position. Positions which in reality may be based on inaccurate information and filled with errors but to the person pressing their point it is "the truth" and they KNOW they are right. (Because the talking heads told them what was right).

Historically governments have fallen apart after being run the same way for 200 years. We are now at the 237th year of this experiment called Democracy. Who says that it is the end all be all to running governments. As we can attest this month it is failing in a spectacular way. Chaos and fear are all that is needed to topple a government.

What is with the obsession to be right. Why do we as humans feel the need to be constantly right? Why can't we accept that we each may have portions of "the truth" but none of us has the whole "TRUTH".  This thought leads me over to religious organizations who teach their followers to believe unquestioningly that they (the religious leaders/spiritual advisers) are the only ones who KNOW what GOD wants and they are here to guide each and every one into the promised land.  When in reality there is no way to know which religious construct is the correct one. Or if one really exists!

Are we as humans making it all up? In our effort to feel we are not alone?

The interesting thing is every place you go to on earth has a story of a deity or multiple who are being worshiped. Each one has a story to explain how the earth began and many are similar even though there was no contact between peoples in the ancient times.

What if as the world began multiple sparks from the "Big Bang" set out with programmed information and each spark landed on a human as a virus and entered their brain and caused them each to have high fevers and hallucinations. Out of these fever dreams we ended up with people in each corner of the earth believing in "other" and naming it a "god". 

I believe there are many things that we do not know in this world. I am on a journey of discovery and each and everything I learn or experience helps me on my path. To where I don't know but I don't want it to be the Elysian fields or the pits of hell both are way to limiting!

Updates

Long time no see everyone...I have been truly delinquent with writing this summer and now it is definitely fall and I need to get caught up.

At our last chat I was informing everyone about a new study being conducted for people with PVNS. I completed the process shortly after the announcement and it was completely pain free and as a bonus they sent an American Express gift card to everyone who participated.

The summer has been fairly low key I did not get to the pool (outdoor) even once this summer as we had a very cool summer; which in OH is very unusual. Then September came and the weather became our normal July temperatures. Any way I am still not very active yet. I started volunteering in June and "work" one day a week at Kettering Medical Center. The nice thing about this gig is that I can sit if I need to and I can stand and rock (makes my hip hurt less) as needed. I am greeting people as they come into the Physician Office Building (POB) and giving directions or answering questions. It is actually kind of fun but there are times where it can get boring with no one walking in the door, that is when I organize the drawers.

I finally got my shoulder repaired after injuring it 18 years ago and then getting it re-injured in 08 when the car hit me. The surgeon was able to repair everything through 4 small incisions and he found that there was a lot to fix once he got in there. It was booked as a Acromioclavicular resection, shoulder decompression and possible rotator cuff tear. What they found was a rotator cuff tear, a laberal tear and a bicep tendon tear along with lots of debris floating around. So they fixed the rotator cuff, resected the Acromioclavicular joint (chopped off a piece of my clavicle) fixed the laberal tear and inserted 2 anchors to hold the bicep tendon in place and cleaned out the debris. I was placed in to an immobilizer for 6-9 weeks and sent on home. Because of all my allergies or sensitivities to narcotics I cannot take what they normally use for surgical recovery and I was sent home with a Prescription for Tylenol#3 for pain management. If you have ever had surgery you know that T#3 does nothing to help with pain management. I had been using pain patches prior to surgery so my family doc called in a refill with a higher dose of the pain patch. That helped a bit but I really am not so sure it was doing much good at all. Several weeks later I ran out of the pain patches (had 2 defective patches that would not stick and fell on the floor .... I was not about to pick them up and put them back on my skin) ... ANYWAY I ended up needing a refill before the RX could be filled and I decided to forget about it and had about a week of withdrawal symptoms (fever and chills) and that was it no big deal getting rid of them. I am now 7 weeks out from shoulder surgery and I am doing really well I got the immobilizer off on Thursday and have just a regular sling to wear now. I am not wearing it much at home but when I go out I am putting it on. Doing loads of exercises to stretch and loosen the shoulder and I am getting back the range of motion but full ROM may take a bit but I am not giving up. 

I am now 10 months out from my LTHR and I am once again having hip issues. It feels like there is fluid surrounding my hip joint and it hurts every step I take and my leg is swelling up like crazy. I lay in bed with my legs up all night or in the recliner and while in these positions the swelling recedes, then I stand up and boom the swelling comes back again. I put up with it for about 2 weeks before finally emailing my Orthopedic Surgeon (OS) who did my surgery and  his PA called to tell me that he was on vacation and she would get back to me. So now he's back and they chatted and he is throwing in the towel and has asked that I go to see another OS. This one works in the town where I live my OS that did the LTHR is 90 min away. I called and got an appt for the 9th of Oct with the new doc. I was actually surprised that they had an opening so soon and I would not have to wait 6 weeks to get in. In the meantime I am icing elevating and resting my hip in hopes that the fluid will go away and I will stop hurting. I still have problems with the implant, I wonder sometimes if the cup or the rim is wrong and is rubbing on the muscles that run through the groin because I have had groin pain since surgery. It actually feels better if I sit with my leg "cocked" out to the side. I was chatting with a fellow PVNSer and she has the same thing going on with her hip and she was told the reason it feels better to sit that way is it opens up the capsule around the joint and relieves the pressure. I will do an other update once I hear what this other doc has to say; although I am not convinced he is the right person to see since he is a "generalist" and not a "hip specialist" and I don't even know if he has ever dealt with PVNS!


More another day

PVNS and GCT-TS Research Study

I received this email on May 30, 2013

Dear Sheila,

I am contacting you about an important PVNS and GCT-TS study that may advance research! PVNS and GCT-TS tumors are rare and input from participants with these tumors is very important. 

We are conducting this interview study so that we can learn from you and better understand the symptoms of PVNS or GCT-TS and the impact that these symptoms may have on your life. 

You may be eligible to participate in the study if;

·         You are 18 years of age and older

·         You are able to read and speak English

·         You have or had a PVNS or GCT-TS tumor and this can be clinically confirmed by your physician

The study involves an interview lasting about 60-90 minutes, no treatments are given as part of this study. If you are eligible and participate in this study you will receive $100 for your time.

If you would like more information about the study, please call 866-766-2344 and ask for Kelly McQuarrie or Adam Weinberger.

Please feel free to share this invitation with others that you may know who have PVNS or GCT-TS who may be interested in participating in the study.

Thank you for considering this important research study!

Adam Weinberger

Research Assistant

Outcomes Research

United BioSource Corporation

7101 Wisconsin Avenue, Suite 600

Bethesda, MD 20814

Phone: +1 240 235 2502 ext. 62502

Cell: +1 301 219 8683

Fax:  +1 301 654 9864

Email: adam.weinberger@unitedbiosource.com

www.unitedbiosource.com