Farrah's Right Fulkerson TTT 1/8/08, now RSD/CRPS...Left Fulkerson 11/16/10

[arkitect06]

Thanks so much for your response!  It has been a very long 2yrs!!!  To sum it up, after a few years of PT and a scope with no help, I had the Fulkerson TTT in Jan '08 which turned into RSD/CRPS in that leg.  For so many months, the doctors didn't think it was RSD and treated me with intense PT, cortisone shots, and Euflexxa injections...all while trying as many meds as possible to control the pain.  They didn't believe the amount of pain I was complaining about b/c everything healed from the surgery.  Had several 2nd opinions that didn't bring much except one thought it may be RSD and sent me to a pain clinic.  In the meantime, I found my OS's e-mail address and complained to him that his PA doesn't believe the pain I am in and want some help.  So he took charge and no longer allowed me to see his PA! Sent me off for a bone scan and a pain clinic where it was diagnosed as RSD/CRPS.  Had a series of lumbar sympathetic nerve blocks that only helped for that day, but since it helped at all, that definitely meant RSD.  Then had the radiofrequency lesioning procedure to kill a part of my nerve in hopes of decreasing the RSD pain...no such luck!  Finally they did the spinal cord implant in November 2008 to help control the pain and it worked.  I had a few problems with the implant and had a surgical revision in December 2008 and another in February 2009.  After February's, I developed MRSA and was given an option of SCS removal or 6 weeks of daily IV antibiotics to try to get rid of the infection.  By this time, the RSD pain was under control and I moved on with my knee problems where I was then diagnosed with severe patellar tendonosis in both knees...the bad one was worse. I was famous around the OS and the PT place for having the worst case they had seen (PT is in the OS office)...so had a PRP injection with intense PT.  Then I found out the SCS had to be removed b/c the infection wasn't clearing up.  So they removed it in May 2009 and I developed a fever the following night and was sent to the hospital for 5 nights to the infection under control.  With the removal, all of the RSD pain was horrible again and couldn't get through PT anymore.  So that PRP injection was a waste b/c PT has to be in conjunction with the injection to get any improvement.  A few weeks later, my infection persisted and we couldn't figure it out and was sent for an MRI.  The MRI showed a mass and an urgent situation to find out what it was.  The next day I had a CT scan to draw fluid from the site and get a better view of the "mass".  It was a piece of my spinal cord simtulator!!!  It was left in there and caused the infection to last months longer.  After several doctors didn't want to fix me b/c another doctor is the reason it was left, I finally was referred to a great surgeon!  In July I had the piece removed and an overnight hospital stay.  During all of this, I had developed severe abdominal pain in May and was getting tests and treatments for that, but was also a mystery.  I was finally released from infectious disease and allowed to get the SCS re-implanted to control my pain.  November 2009 I had it implanted again with a new neurosurgeon rather than my new pain doctor (we "fired" the one that left a piece of implant in me) with an overnight hospital stay.  I was required to take 4 weeks off work to rest.  By December, my abdominal pain was treated and tested by my primary care doctor, a gynecologist, and then a GI specialist.  So this brings us to January 2010 when the abdominal pain became persistant and unbearable.  My GI specialist sent me for an ultrasound where a blocked kidney was noticed.  She immediately sent me to the Urologist where he noticed a 5mm kidney stone from an August 2009 CT scan!!  He concluded the pain since May was this kidney stone which after a new x-ray and CT scan showed the 5mm grew to 8mm and was completely blocking the kidney.  That was all last week followed by Friday's Lithotripsy to break it up and take away the pain.  Since my November SCS (back) surgery, my RSD is under control again and was time to get my tendinitis treated again!  I had a PRP injection yesterday and still sore and icing today!  In case you don't know what that is, they draw blood and separate the platelets and do an ultrasound while injecting them back into the tendon directly.  Percocet with Nucynta was the only med combination that helped the pain and soreness there!! PT starts on February 9th! 

Since 1998, I have also had back pain from being a gymnast...they say that's what started the knee problems too! With all of these medical issues, I now have a worrisome racing heart beat and slightly high blood pressure (BP is now controlled with a low dose of Lisinopril).  After seeing my GP yesterday, she did an EKG and drew blood to check for problems that could cause racing heart rate, but doesn't think those will be conclusive.  She gave me a cardiologist's number and wants me to follow up there.  She thinks they may do an ECG and have me wear a heart monitor for a few days and put me on a Beta blocker rather than the Lisinopril. 

I saw my Urologist for a follow up today.  The new x-ray shows that the 8mm kidney stone is completely gone! They will take the pieces of the kidney stone that I passed and send them for analysis to determine what caused them.  I still have a 2mm one in my other kidney, but they will just monitor it every 6 mos with x-rays to see if it grows or moves (if it doesn't pass on it's own before then).  I go back in 6 weeks for the kidney stone analysis results and some labwork results that I will have to do in the next few weeks.  I have to collect my urine for 24hrs and take it to a lab facility where they will take a sample of that and some drawn blood and send for tests.  So in 6 weeks I will get all of those results. 

Next week I follow up with my pain specialist to continue trying to lower my strong pain meds while taking another med to prevent withdrawals.  It was first lowered in December and I became sick for 2wks from withdrawals.  So we will try again next week.  He will let me decide if I can handle the lowered doses b/c of my continued knee problems, PT, and treatment.  He will gladly keep me on pain meds if they are needed for a longer amount of time...he also knows how badly I want off of them, but also don't want a ton of pain.  It's hard to live life and continue working with pain. 

I also follow up with my back specialist next week.  I haven't seen him since April 2009.  Ever since my SCS implant in November 2009, I have not been able to stay asleep b/c of my back pain.  I had an SI joint injection in September, but it wore off by November.  It may just be time for another injection.  We'll see. 

My husband and I have been married 3.5 yrs now and are ready for children!  So our goal is to be pregnant by the end of the year! 

Thanks for the support!

Farrah

[arkitect06]

This is the x-ray that I received from my Urologist today.  This one is the one with a kidney stone and she showed me one without.  You can't really see it well.....but you can see my stimulator!! 

[arkitect06]

If you save the image somewhere else and view it in your normal picture viewing program, you will see it better!! 

Or you can see it here: http://s538.photobucket.com/albums/ff346/arkitect06/?action=view&current=x-rayimageonly.jpg

[tez27]

Farrah that is a massive amount of health problems for one person to deal with I think its definatly your turn for some good things to happen in your life. I hope your dream of having a baby comes true soon and you continue to improve with all your other problems.
It sounds as if you have a good husband to share all this with and I think that makes a big difference to how you cope with the bad things that happens to you.
Take care Tez xx   

[arkitect06]

Hi Guys, sorry it has been so long since I have updated!  I have not been feeling very well and haven't been very motivated to update for some reason.  Since I had my PRP, I have noticed some slight improvements with my tendonosis.  I started PT last week and so far so good.  I get to start tennis in 1.5 weeks from today!!!   He is making me follow the PRP protocol very closely, but if it gets me back on the courts, I am fine!    I am still struggling with walking 100% normal, but that's what happens when you have been on crutches or cane for 2yrs!  My OS that did the PRP is different from the OS that did my original knee surgery in 2008.  The original knee surgeon has been making most of the calls for all of my treatment though and I feel confident that he really wants me to get back to my previous life...or close to it!  While at PT today, he saw me working on some exercises and actually stopped by to see me and ask how I was doing.  I have been communicating with him and his PA almost weekly or monthly since the 2008 surgery, so he's pretty up-to-date on everything that has been going on.  Anyway, he watched me walk some laps today and did compliment me on how far I have come in only a few months since my SCS surgery and only 2.5weeks since my PRP injection!

Since my last post, I have seen a cardiologist and have had some tests and some results already.  My heart rate is averaging around 155bpm with every "episode" of palpatations and shortness of breath.  She has me wearing a heart monitor for 30 days straight despite the diagnosis.  She has done some research on my medications and combinations that could cause similar symptoms...it has been determined that my Cymbalta combined with my Nucynta (pain med) is most likely causing my severe tachycardia.  She has urgently requested me to contact the doctors who have prescribed these meds and to slowly work my way off of one of the meds under doctor's supervision.  I get it changed this Wednesday during my next SI joint injection for my low back! 

I have an echocardiogram tomorrow afternoon as well. 

Thanks for all of the support..falling asleep now that I took my heart medication....hope all of you are enjoying the Vancouver Olympics!!

Farrah

[BigSkyGirl]

Hi Farrah, I just wanted to stop by and let you know I am still thinking about you.  Hope things are going better.

LOL, I looked at your xray and your stimulator looks like an iPod......cool, built in tunes!!!

[arkitect06]

Haha...you aren't the first person to say that   I took the actual x-ray to PT on Monday and a few said the same thing! 

For an update.....I was deathly afraid of the leg press exercise at PT all this time b/c I have ALWAYS had trouble with it and tons of pain.  Well on Monday, my PT told me to bring in my brace and step up some exercises and included leg press!!!  I only had it at 50lbs and tended to use my good leg more b/c it still hurt my other knee...but I got through 3 sets of 10...very slowly!  He also gave me some other new exercises which scared me b/c I still don't have a lot of confidence, but got through them.  After PT on monday, guess what I did!!!  I played real tennis on my new team!!!  It was slow and very very careful, but I did it.  My new team couldn't believe that I hadn't touched a racquet in 2yrs....and couldn't believe that I just started walking in November after almost 2yrs of cane and crutch use!  It was fun, but I was very sore all week long in different muscles.  My knee also hurt.  Unfortunately, with the heart problems that I am having, my cardiologist said no to tennis until they can figure out a proper dose of medication to get my heart rate under control.  My next appt there is on March 11 and hope to get the okay shortly after.  My husband and I leave for Taiwan on March 13th and return on March 21st...I hope to be back on the courts on March 22nd!  Would be an awesome b-day present since my b-day is on March 17th!!  I will be 28 with a huge medical history! 

Since my last post, I received normal results on my echocardiogram and had an SI joint injection in my back.  I am on 2.5wks wearing my heart monitor and sending daily results to my cardiologist.  I see my PS and have PT next week...still once a week at PT until I get a little stronger and more active and will increase to twice a week.  As for my heart, on Monday, my cardiologist increased my med from 40mg twice a day, to 120mg twice a day, and now to 240mg twice a day!  I hope this is the last adjustment and all will improve from now on....I just hope that I do not have to be on heart medicine forever!!! 

I got my kidney stone results a week ago which is calcium oxalate and for now have a small diet until more results come in.  I go back to the doctor on March 8th to get the final lab results and the final diet.  For now, I was told to drink a gallon of water a day, only 2 servings of red meat a week (which I hate red meat), watch my salt intake, and eat as much chicken and fish as I want.  I love chicken and fish!!  Will learn more in a few weeks.  I had to do a 24hr urine collection last weekend and take it to a Labcorp to turn in and get blood drawn and all of it sent off for results.  At least that kidney stone pain is gone for now!!!  I hope the kidney stone that is still in my left kidney will stay small and not give me problems!  I have had enough problems! 

Okay, just got home from dinner with a friend and her husband with my husband...was the first social event that I planned since I have finally started feeling better with my leg, back, and abdominal pain.  So time to go make some jewelry now that I am home!    Working on a St Patricks day necklace since that's my b-day and one of my favorite "holidays"...not really a holiday here...just a day to wear green and pinch people who don't! 

Have a good weekend all!!

Farrah

[BigSkyGirl]

Whazzup girl!!??

[Clarkey]

Hi Farrah,

Hope you had a good time with your husband in Taiwan on March 13th to March 21st and saw some photo's you had taken that you posted onto Facebook and looks like you had a really good time and must be nice to see your parents who are living out there at the moment, they are still out there at the moment?

Happy Easter, enjoy the long Easter Weekend.

Nick {2010}

[arkitect06]

Hi Guys! Again, sorry it has been so long since I have posted!!  We went to Taiwan for my birthday and had a great time there!  The travelling wasn't so bad on my body b/c we sat in bulkhead the entire 24hrs there and back.  So we were able to put our feet up on the wall and stretch out some.  Made travelling much easier.  I did stay highly medicated to be able to relax and fall asleep and get through what pain I had.  They played 4 movies there and back, but can't say that I watch much of them.  With Ambien, I fell asleep on the longest flight there and back.  Anyway, we had a good time.  Anyone on facebook can view my images during the trip. 

So when I returned, I had to call my cardiologist and complain about some of the episodes that I had while in Taiwan.  She has sent me to an Electrophysiologist Cardiologist specialist.  HE specializes in the electrical parts of the heart..the parts that make the heart beat fast/slow. Since they have adjusted one of my meds, the episodes haven't been as frequent!  I just hope I don't have to be on heart meds for the rest of my life! 

As for my knee, it's okay, but not great.  PT has been causing it to hurt a lot and also causing the RSD to hurt more to compensate!  So my pain specialist adjusted some of my meds.  In the meantime, my PT is going to back down on my PT some so that I am not in so much pain.  I go back tomorrow afternoon.  The rest of the weeks of PT are on the day and time that the OS comes in to check on certain patients.  I think they put me on that schedule on purpose. 
 
As for tennis, b/c of pain and heart issues, I have only played twice total.  They have not put me in the match-day lineup yet b/c of the medical problems.  I don't know if I can make it through an entire match yet!  So I honestly am starting to think maybe I came back too early.     

Well I am still working for one of my dog shelters on Thursday nights....it's so much fun no matter how hot it gets with no AC!!!  I also am always in charge of the puppies...there are two sets right now and both so adorable!!!  I have my favorites!!! 

Well I will update next time anything comes up...I update my facebook status almost daily and keep up with many of my KG friends there now days.  They all keep up with everything   It's nice to have the support!!! 

Hope everyone else is feeling okay!!!  Thanks for the support!

Farrah

[Clarkey]

Hi Farrah,

Glad you had a good time in Taiwan and must have been a very long plane journey back and must have been jet lagged for a few days after returning home. Sorry you still in a lot of pain and have to take pain meds, so was good to spend a few weeks away to take your mind of things.

Have a good weekend and enjoy the spring weather.

Nick {2010}

[arkitect06]

Despite having RSD/CRPS,painful patellar tendinitis,& other issues, I PLAYED A FULL TENNIS MATCH TODAY!!! WE WON IN 3 SETS!!It felt mentally amazing!I sucked up the RSD pain that was creeping up after the 1st set & played as best as I could!After 2.5yrs of pain and barely walking,I played tennis! Nobody can really understand how great that is for me!Never thought I'd ever walk on a court again!

A young cat found us on Friday night in our garage.  The door was open, but when I walked into the garage and Aury followed me, the cat didn't move.  She even let me come and pick her up and pet her.  I shut the garage door and soon after, matt came out to see what I was doing.  We took her to the back deck and fed her some dog food and water which she wasn't interested in.  We decided to keep her overnight b/c she was obviously malnourished and not cared for...no id either.  She finally ate a half a can of tuna fish since it's the only other thing we could offer her!  She was so grateful to have food, water, and people caring for her.  She's very frail and needs to gain a lot of weight!  The next day, she was still around and we were courageous enough to introduce her to Marshall (our other dog that generally hates any other type of animal...especially when the animal gets my attention).  With his bark collar on (was the only way we'd try), he managed to sniff her up and basically ignore her after a few growels.  Over the weekend, we kept both dogs outside with her and Marshall still had that bark collar on b/c we just don't trust that he'd be nice without it (or tolerant).  I did let him see her once without the collar and he began to get a little mean.  The collar just keeps him in check and under control....it only feels like a little shock like when you touch a light switch in the winter or something....more scary than anything.  Anyway, we are keeping her and have called her Jasmine!  For some reason I just thought that name fit her.  Until we can take her to the vet for a check-up, we will continue feeding her high fat cat food and treats now and again.  I am trying to train her to come with her name being called....I call her name and offer a treat and so far so good.  The trick is taking her food, toys, or treats outside with the dogs inside! The transition is hard b/c they all want to be together and Jasmine wants to be inside....matt has horrible cat allergies, so she is outdoor cat.  LOVE HER!!! 

So that's my life right now...tennis was amazing!!

Farrah

[Clarkey]

Hi Farrah.

I have my own cat Ellie from a animal rescue centre last year December and have always loved cats and hope Jasmine fully recovers from her ordeal. It is great when you can help a sick or injured animal as they need our help to survive.

I am unlucky like yourself with my knee, as so far my scope has made my knee worse rather then better but thats life and just have to accept it for now!

Enjoy the start of a new week.

Nick {2010}

[arkitect06]

I guess I didn't realized that I hadn't updated in so long!  Lots has happened since my last post.  Physical therapy caused my RSD/CRPS pain to flair up as well as the regular tendon pain...so I have been out of knee PT for a few weeks and back to shoulder PT until I can go a few weeks without shoulder pain.  So nothing new on my bad leg to report.  Unfortunately, tonight while out to a plant nursery picking out some new bushes/flowers to put in our front yard, I stepped wrong and did something to my "good" knee!  It's not swollen, but I rarely am...most of my inflammation is always inside.  Anyway, it hurts to fully weight bear, extend my leg and contract the quads, and to get around. I am laying on the couch with that leg slightly bent and extended with some pain. Of course I have plenty of meds to help....I hope it's just a strain or something that will go away quickly!  With my bad leg, I can't afford another problem in the other knee.  I have always had tendon pain with both knees, so maybe it's related to that? 

Anyway, I think I have posted about this before, but I have been tested and treated for heart palpatations and as of April 20th, was diagnosed with atrial tachycardia.  Yesterday I had a minor surgery called catheter ablation to attempt to find the problem and burn it.  Unfortunately, the procedure was unsuccessful in finding the problem and after 3hrs in the OR and 3hrs in recovery, I finally got to move my right leg (the procedure starts at your groin) and stand up.  I got to go home about 30 mins later.  It was a long day for nothing to come out of it!  My back and bad leg were so stiff before standing up that it was where most of my post-procedure pain was! 

For those that don't know what this heart thing means, it is basically explained like this: Everyone has a natural pacemaker in the upper part of the right side of your heart...my condition has two based on test after test. The procedure stuck a catheter up my veins from my groin up to my heart.  They pumped up a balloon in my heart and induced 200bpm palpatations that were very scary!!  They waited for a certain signal to determine where this extra pacemaker is and burn it.  They couldn't find it after 3hrs of being in the OR!  So for now, they are waiting for my condition to worsen while taking a new heart med to control my palpatations.  They will try it again potentially in a month or longer.  I hope it works eventually so that I will not have to be on the med forever...it doesn't allow for child birth   Many of you guys know that we have a goal of getting pregnant by the end of the year....heart problems could extend that!!!  I already have enough medical problems that could extend that! 

Anyway, after we adopted the cat the actually found us, i realized "she" was a he!  His hair is so long that it was difficult to determine and I assumed he was a girl.  I later found a huge set!    We did end up taking him to the vet and found out he was only a kitten at 6 mos of age...now he's about 7 mos.  He had a bad upper respiratory infection which we had him treated for.  After the vet treatment, he was also on antibiotics for a few weeks.  Unfortunately, he's still sick and I got fired from my job and can't afford continued treatment.  For now, we are making sure it doesn't worsen...we will take him back ASAP.

Yes, I got fired from my job!  As some of you know, they were looking for reasons to get rid of me a few weeks before!  With my absences, and often having doctors appts, I guess they finally gave up on me and made up a bunch of reasons to let me go.  Fortunately, I am on unemployment benefits, so we can manage the financially issues this has caused.  They said that I would get paid vacation, but they let me go 2 days before it started!!!!  So I didn't get my week of vacation!  I will talk to them about that on Monday since I just found out on Friday evening.  Bleh!     Just more crap to worry about! 

That's all for now...my mom is contacting a lawyer about my medical stuff...I don't want to go through that, but she's insisting!!  We'll see where that goes. 

I hope everyone else is doing okay!

Farrah

[BigSkyGirl]

Gosh Farrah, I am really sorry to hear of your job loss.  I hope you can get everything worked out in your favor, you are going through enough and now this.  it might not hurt to talk with a lawyer, you may have a case for wrongful dismissal and be entitled to some compensation, after all, they knew about this when they hired you.

Don't get discouraged, I know, easy for me to say but you are a fighter and things will get better.

I like that you and Matt are taking walks together, me and my hubby do that and we talk and I get his undivided attention since there is no TV with us...ha.  He calls it "wife preventive maintenance" and likens it to keeping a vehicle maintained and so one must also keep the marriage maintained.

I hope the kitty is doing better, you are a wonderful person and he is soooooo lucky to have found you.  You will take good care of him and it sounds like he is grateful.  Are you still volunteering at the animal shelter?  I love cats, we have 2 boys and they are so social and loving - one even comes when I call him - he thinks he's a dog I guess.

Keep posting, there's not many here anymore but I come by to see how Nick is doing and always look to see if you have updated.

Diane