Revision THR Nanamac's story - Part 2

[Josephine]

Re: This is my story

Janet, take some time off the forum if you need to. You've done more than most and have earned it.

 

[nanamac]

Re: This is my story

Thanks Jo, but "I" may need you guys now more than ever! The Pain Clinic guy was a TOTAL waste of time. Told me I need to see an Ortho Doc :DOH::DOH::DOH:...

I did get my knees xrayed today though after he said that...

My Thyroid doc (endochronologist) told me to call an "Infectious Disease" doc and did a bunch more labs today, and my GP put me on stronger BP medication as my BP was so high...ya think???

So, I'm now waiting for the xray results on my knees...

 

[Josephine]

Re: This is my story

:DOH: Some of these doctors! You can tell they are just swimming in the mire, can't you?

 

[nanamac]

Re: This is my story

Uh huh....

Well, I didn't care for this pain clinic when I went a year ago to a colleague of his as I felt I was talked to like I was there for a drugs! Truthfully, I didn't care if they did VooDoo! I wanted to be off drugs and pain free!

And these places take months to get into and are highly recommended :hissyfit:!

Well, I should have the results of the knee xrays tomorrow anyay...:hate-shocked:

I can't wait...but, I will let you know..

 

[special lady]

Re: This is my story

Sorry, you didn't get much out of the day today Janet. Try not to let it discourage you though, you have 3 weeks until you see a new OS. I think part of the problem is that your so limited to the amount of Doctors in your area, which limits the amount of knowledgable Doctors as well. When compared to a bigger populated area in the US consisting of well over 1.5 mill. to a nice small town like the type you live in with a population of about 20,000 there's simply not a lot for you to choose from.


I was wondering when you speak of other problems going on too, have you considered calling the Mayo Clinic in Rochester Minnesota? I know the way they treat patients is with a team of physicians, they ask you all kinds of questions and depending on all the symptoms, you go from a GP, Neuro, Orthopedic (one that specializes in knees & another that specializes in hips), and in your case possiby a infectious Doc, endocrinologists, and whomever else they feel can help in your case. Then they set up all the appointments for you and you could be there for a couple days to a week seeing all the differant Doctors from your team, you have all the test they might order in between seeing all the Doctors, the they all meet and you are told the best treatment possible for you, as they address every single symptom and need.


I believe if I was looking at so many differant symptoms going on, and the problems you're having with the complexity of your case as well. I would even consider going to the Mayo Clinic and I'm in a large populated area. Just a thought, I don't think it would harm in you calling the Mayo Clinic to see what they would suggest and recommend. I've referred complex cases there in the past, and with orthopedics I'm pretty sure the waiting time is about 3 months for hips. Although because you have other symptoms as well you might be able to get in sooner.

I hate to hear of someone suffering for so long, and I hope you get some answers from the Doctor in Boston, if you feel the Mayo might be too much to take on.

My best to you, try to relax... I know sometimes that's easier said then done, but try.

 

[Phillygirl]

Re: This is my story

I am sorry to hear that you are having such a frustrating time. Hang in there. I do know Boston has some great Doctors. I am not trying to diagnose you but you mentioned your endocrinologist wants you to see an infectious desease doctor. If the thyroid is out of wack and this does not necessarily show up in the numbers, this can cause a lot of joint pain. The other thought I had for you. Did they do a bone scan on your hip? This can show up small fractures that can be missed on xray and MRI. I can relate that ongoing pain is exhausting. I am taking percocet and I did not take that right after surgery. Mine is gluteal tendinitis and I am waitng 7 weeks for a doctor down in Philly to do these injections as not everyone does this.I am praying for resolution for both of us.:prayer1::prayer1::prayer1:

 

[nanamac]

Re: This is my story

Thanks SL, but that's not likely to happen. No $$$ for it on this end...

Philly, I take thyroid meds and see the endochrinologist as I had my thyroid radiated years ago, so in effect don't have one! The meds take the place of it and he is VERY good on checking the "whole" person.

He was my GP before he became a specialist and I tell him eveytime I see him how I miss him for that. He was/is the best doc I have ever had. He is my age but lets me know that I am 3 months older than him, LOL.

I had 2 bonescans this year already. One for the new OS and one when I had the infection. I don't know that Medicare would pay for a third. These were before my tumble of course.

The waiting for thse doctors is incredible! I am surprised that the new Boston doc can see me so soon.

Hang in there Philly. Certainly not what we thought it would be, is it? Thanks for you prayers...

 

[vivb]

Re: This is my story

Oh Janet - this is the pits. Bless your heart - if only I could DO something. Well, I can, I can keep on holding you in my heart with huge love.

 

[sweetcaroline]

Re: This is my story

Hi Janet,
I just wanted to let you know that I check your thread everyday and although I don't post each time, I am thinking of you.
You will get the answers!
Take care,
Caroline

 

[beesquare]

Re: This is my story

So sorry you didn't get any joy from the Pain Clinic Janet -I know you were hoping for good things from it. I really think you are amazing for coping as well as you do - I've been as ratty as hell this week just from my minor issues - if I didn't know it was a physical impossibility I'd swear it was PMT!!!!! Take care dear

 

[nanamac]

Re: This is my story

PMT? Hmmm...I've googled PMT and found some very interesting acronyms :th_heehee:..Ok, I give up. What did you mean? Sorry ...1

And thanks for caring Anne!

 

[Josephine]

Re: This is my story

I think she meant premenstrual tension, Janet! :th_heehee:

 

[nanamac]

Re: This is my story

Oh..., been a while...However, there were some real beauties out there :th_heehee:! I always hear it referred to as PMS in the US!

So, I read the letter on my report online a few minutes ago regarding my xrays..."mild degenerative changes"!

Ok, I give up. This excruciating pain in my hips/thigh-femur/knees, etc, is NOT mild degenerative changes! It is the most horrific pain imaginable! What is going on?

My endo guy is sending me to an infectios disease specialist, but, I am wondering now about all the transfusions that I had during the surgery. I know that's a stretch, but something is very wrong.

Yesterday I awoke to bleeding gums, and I go to the dentist every 3-4 months, and NEVER have a cavity or a problem. I go because of sensitivity so I get my teeth cleaned more often so they don't have to "dig".

Well, next stop Boston!

SL, I had 2 bonescans already this year before my fall, and I don't think Medicare would be very happy with a third. I can tough it out until the 7th. What choice do I have? Just trying to really skimp on the Percocet...

How were your femur fractures treated before the THR this time SL? Surgeries? I know you mentioned stress fractures from riding.

Uugh...I know Billy(forbesy) mentioned that we certainly want GOOD news when we have testing done, but when you know there is pain, and nothing is explaining it, you want to know why!

I guess I just keep on keepin' on. Thanks for your thoughts too Caroline . Glad to know you keep checkin' on me. One of these days I will have an answer...

 

[nanamac]

Re: This is my story

Well SL, the current OS that I have been seeing is not the one who did the THR & revision, and he can't find a thing. The pain is inflammation as the prednisone makes it disappear but of course I can't stay on prednisone.

In fact, only a larger dose of prednisone worked, so I just have to hope the new, new OS has some answers. Believe me, I had pain from the fracture and I know what pain is, but this pain almost makes me grit my teeth or do breathing exercises. It is more of a burning than a sharp pain.

Stairs are getting to be impossible and the swelling is very visible in my knees, even the Pain Clinic guy commented on it yesterday. I know the THR was not done properly and that has added to the stair climbing problem, but I need to find some sort of specialist thet deals in what causes this pain, not in pain management.

Pain management will come after I can figure out the why to all of this.

It may be an orthopedic problem, but I'm thinking it is more of a systemic problem. In any event I still need to find out what I can do about my hip/thigh problem...

May I ask what was causing your fractures? I guess I misunderstood.

 

[Poppet]

Re: This is my story

Hi Janet

I do hope you can get some answers soon. I know how frustrating it must be for you - hang in there

 

[nanamac]

Re: This is my story

The OS that I have been seeing is not connected in any way to the one that did my surgeries. Not the same group or hospital. This one has a great reputation locally, the other was from a big Boston hospital famous for joint repalcement surgeries. The new one I have yet to see is from an altogether different location as well but in Boston also.

I do not have a limp when on prednisone only when I am in pain. I think you may be confusing me with another member?

My red blood counts have been low of late, this is why my endo doc thinks my gums are bleeding, not from too much oxy. I do not get the red spots that you mention. I have been one to bruise easily my whole life though.

I don't know. Very troubling. However, I am going to keep looking. The more docs and people that I talk to, it's got to ring a bell with one of them.

Truthfully? That is why I continue on this forum (not the only reason :wink1 hoping someone would have an idea of what is going on. This is how I got the new OS's name! Word of mouth is the best for everything!

Thanks for your thoughts and help SL. I do appreciate it.

How has your fluid build up been? Any drying up yet?

Enjoy the weekend. No mountain climbing yet though, ok? :th_heehee:...

Can you believe it actually snowed here last night? We could have a nor'easter this weekend they are saying :hate-shocked:! YIKES!

 

[Josephine]

Re: This is my story

on top of that your having hip/femur pain which could very well be radiating down into your op side knee. This can be in both knees because your guarding your op side. This kind of referred pain is not unusual when your body is out of wack

So true. When I tore a shoulder muscle in a fall earlier this year, the resultant need to use my left, non-dominant hand to do everything ended up with a flare of tendonitis and muscle pain all down my left arm, across my left and centre shoulder and all down the left side of my chest. Even taking a deep breath was awful! I thought I must have broken a rib or something! But my chiropractor found out the cause and worked on it. It and the muscle tear were just getting better when a bus I was riding in made an emergency stop and I got whiplash! Ironic!

So remember, Janet, much of your pain might be being referred from another focal point. I know that's not much comfort but it's true, nevertheless.

 

[nanamac]

Re: This is my story

And truthfully, the current OS never examined me after my fall, just looked at the films! Perhaps this is a muscle or ligament tear/strain as I know it does take months to heal from those.

What is concerning is the knee pain is worse when I first wake up and try to walk. It is also terrible if I am lying on my side or trying to roll over in bed. My hip/pelvic bone on the outside I can no longer lie on, on the THR side. My bones are killing me!

The pain clinic guy did all kinds of poking and said it is NOT FM, which I know effects the upper body, yet everything he poked from the waist down, I was at some points screaming with pain. This pain is all below the belt.

I don't know. I just keep looking, and I can't thank you three "J's" and everyone else enough for all the compassion and help you have given me. I am also going to call a Physiatrist (NOT Psychiatrist :th_heehee this week.

Ok, don't need any comments on the last sentence :DOH:...

 

[nanamac]

Re: This is my story

It just occurred to me that I was seeing a Psychophamacologist while in the hospital during my two surgeries as they just couldn't get my pain under control. So obviously I have a major problem with pain management.

It took a lot of trial and error before they found a cocktail to work. That is why the percocet has little effect on me as well. And any other surgeries I have had I have gone thru the same thing with pain management, or lack of it.

I am going to call a local Psychopharmacologist instead of the physiatrist. I think that is a better idea!

 

[forbesy]

Re: This is my story

Hi Janet

Well you certainly have been through the mill and have a long journey in front of you, lets hope you can find someone very soon who can sort out some pain meds that have an affect until you get your op's and give you a bit peace of mind.
All the best with your[ Psychopharmacologist] glad I didn't have to spell that one. :th_heehee:

Billy