I am terrified for the first time

[Was_86]

Is it possible for you to see an OS in NYC? Hospital for special surgery and NYU joint disease center are two of the best in the states. Good luck bro, this site is amazing in regards to support and knowledge about replacement and surgery. Keep us posted and take it easy.

 

[cryinsham30]

Thanks, New yprk is out of the question for me, unless it comes to absolute dire straits so to speak. Plano Texas is an option, as well as a few others. I have a few things going against me currently in these regards.
1. more than 20ish minutes in a vehicle becomes extremely painful, I can get up to 45-1hr with a break or 2.
2. I am retired military and on medicade, so organizing between the VA, the military MTF and MC is a nightmare
3. I have no clue how a flight would be, I cannot imagine it being comfortable at all, since I get leg swelling after sitting for an hour in a chair, but alas, it will boil down to my faith min my doctors, my insurance issues, and whatever 2nd and 3rd opinions give me.

 

[Josephine]

I was not confusing pseudotumor with infection, but instead looking for reasons/possibilities of my CBC bloodwork being high. I ramble sometimes, and my thoughts are not always clear, I apologize.

No apology necessary, my friend. I kind of supposed you weren't confusing it but I wanted to make it clear.

Mr David Langton North Tees and Hartlepool University Hospital
Mr Tony Nargol, FRCS North Tees and Hartlepool University Hospital

You probably don't know this but these two chaps were responsible for first bringing the MoM issue into the public domain. They'd been campaigning about it since about 2006. However, Tim Brigg's comment about lack of symptoms not being indicative of absence of metallosis is the key point.

I also strongly urge you to choose Plano and Dr Maale. He is absolutely the 'go to' man for this. I think you might be able to negotiate costs with him as well. I'll tag @RestAssured as she knows him well and has been in his care for a long time. She will know what's what!

 

[RestAssured]

Dr. Maale can diagnose metalosis very quickly! He is the most well-rounded when it comes to metalosis, infections, revisions, that I know! I have one of his knees and I agree to be in the first 100 of the Smith and Nephew HK and have not regretted my decision!

I guarantee you he is worth it, and no I don't get paid for referrals, although I should!

Please don't hesitate to ask me questions! We are one big "family" and you have joined now! We will be here to encourage you, comfort you, answer your questions, or just listen!

P.s please tell us if you just want to vent so the "shy" Ones like me will understand!

 

[forbesy]

Hi cryinsham

After waiting to get what you thought would be the remedy to all your problems you get informed that this has been a dismal failure, It really is diabolical and really hope you can get this solved asap. Lots of good people on here are prepared to lend an ear if needed and give support as well.

Billy.

 

[Jaycey]

@cryinsham30 Just thought I would stop by and see if you have made any decisions about moving forward on your hip. Such a shame you have to deal with this! Hope you can get it done quickly.

 

[texasvet]

From doing a search for Tricare Providers- Dr. Gerhard Maale- was not on the list as a Tricare Prime Provider. Sorry. You could still use him but would have to pay more out of pocket. Unless he is affiliated as a VA provider, and VA would approve him to do the revision. Thanks for your service.

 

[RestAssured]

Get in touch with Dr. Maale anyway. You might be surprised at how he can accommodate any extra fees!

 

[cryinsham30]

Well, the news is as I though it would be, revision needed. I currently have request for referral for second opinion. However the military ortho doc has my case in for review as well. Surgery will be mid October unless something changes. My Surgeon is awaiting a new extraction tool from a doctor in MN which should reduce the chances for a femur fracture and currently he plans to leave the acetabular component in place and stick with a larger ball. The new stem will be a Zimmer and no sleeves will need to be used for different manufactures. Surgeon did also mention that my pseudotumor was fairly large and hence why he is putting me towards the front of the line so to speak.

Talking with his NP/surgery scheduler, he has done over 3800 revisions in the 12 years she has worked for him, of course that includes knees as well as hips, but as much as he lacks bedside manner, I have faith in him as a surgeon, I just will be quicker on the draw with any complications and not overly "man up".

She (the NP) says likely he will attempt to preserve weight bearing, with maybe a week of "toe touch" only, but of course this depends on if there is any femur/bone damage and no clear answers until he is inside there to evaluate and remove/clear the tumor during surgery. We shall see. I'm still terrified but acceptance of a situation is the first step of making it a smaller mountain to climb.

 

[texasvet]

While your mountain is still there, you are getting a second opinion, and do have a primary plan in place. A plan and action is a step towards recovering from this and another step up the mountain. Keep us informed on the second opinion and decision/surgery date. Wishing you the best.

 

[Josephine]

From me also. This is the daunting side. I'll be praying for you.

 

[Jamie]

I am sorry this is how it all turned out for you, but I am gratified that quick action is being taken on your case. I'll be watching for your posts.

 

[cryinsham30]

Ok, what a whirlwind;

On base ortho surgeon-agreed with everything primary doc said, even listed my primary doc as one to go to for a second opinion; of note is he has treated me off and on for 3 years, but did not actually see me this time, just a "paper review" of my scans/lab work.

Second opinion, office visit, didn't go as good, doc was not an ortho surgeon as much as a "sports medicine guy", but he said thew same basic thing that "its gotta come out now, or its gotta come out later, best to do it while your younger and your symptoms show something is wrong.

revisit with primary surgeon, had some more questions etc. all answered satisfactorily.
Phone call today, special extraction tool came in, he used it in a revision this week, noted one other issue with the stryker implant specifically, that is not a concern, he just wants to block larger times for these revisions, than others. So my revision surgery is 3 nov, first of the day, 0530 show time, 0730 surgery.

I am less terrified than originally, but actually putting the appt in my phone today hit me like a ton of bricks. A sudden gust of all the "issues" from my original surgery came back, and the building of 3 years of pain and suffering all at once. I truly have hope that I will be at the least a little better and stable after this surgery, but before the last one I could move mountains (youthful bliss), now although only 36, I avoid mole hills, and do not even look at pictures of mountains. So should be a danged interesting recovery, I wonder if I can muster that 110% I had the first time.

 

[Jamie]

Was one of your questions to this surgeon a query as to how many revisions he does in a year? That would be my only concern after reading your last post is that this doctor might not be experienced with revisions. This is so important and I hope if you haven't asked this question, that you do and that the answer is a fairly significant number.

 

[cryinsham30]

N worries jamie, I addressed this previously

"he has done over 3800 revisions in the 12 years she has worked for him, of course that includes knees as well as hips, but as much as he lacks bedside manner, I have faith in him as a surgeon, I just will be quicker on the draw with any complications and not overly "man up". "

My primary surgeon Dr. Maitino is beyond a competant surgeon, there is two problems folks have with him, 1. he is a surgeon and not a "primary care doctor", so those who he cannot help with surgery often feel shorted. and 2. which is part of the first really, he has almost no bed side manor, to be blunt, he is an a tripple s., However in my previous line of work, and due to my own arrogance, we get along pretty well, I trust him completely as a surgeon, I do have concerns for "follow up", as is an issue, but going to texas/NY etc. for weeks on end is not an option for us, so I have to use surgeons that are close/take tricare and medicare, and are familiar with this implant.
Which is a very short list, especially since we lost Dr. Hal Martin 2 years ago.

Now, here is another problem/issue, this implant is not like others, so almost NO ONE has done them, the stem itself is "female" not male, and it sits deeper in the femur than others etc. Now on my surgeons end, he has gone and observed several of these extractions in the last 6 months and has ordered/recieved a custom extractor that another doctor had made/designed to help avert femur fracture.

Going ahead these are my only "concerns"
Bleeding out again

The size of my tumor is large and is addition to the muscle/tissue lost post op due to the compartment syndrome/fasciotomy, which all of these muscles ( IT band/Glut/fascia tensae min/maj, iliopsoas tendon etc) that make up the abductors/stabilizers etc. are in pretty bad shape, some like my it band are almost non existant now. I have large "divots" in my thigh from lost tissue and muscle, as well as a softball sized fluid sac etc. The reason this is important is because of the fact that the new (zimmer) implant will need these muscles to stabilize it, so in my case, this is an uphill battle, before we even start to get into the other issues that walking with a bad gait has caused, which is gonna add difficulty.

I will be ready, I have to be, no other option but to face it, and win. I have not made a life out of being a failure, nor one who quits, this is just another battle in a long line of ones, I am just scared and ticked at the same time that the majority of battles have I faced I was in control/had a decision in, this one I do not.

 

[happyhopper]

I still question the number of revisions that this surgeon has supposedly done!! Over 300 revisions a year is just not achievable when doing primaries as well. A good hip revision surgeon, who patients specifically seek out for revisions, would be doing maximum of 50 hip revisions a year.
I also wonder why this surgeon has to order a specific extractor tool when he is doing so many revisions. Suggest you keep asking your surgeon questions until you are fully satisfied, before you proceed.
Good luck.

 

[AnnieABC]

Wishing the best for you, cryingsham. I'll be praying for you.

 

[cryinsham30]

I still question the number of revisions that this surgeon has supposedly done!! Over 300 revisions a year is just not achievable when doing primaries as well. A good hip revision surgeon, who patients specifically seek out for revisions, would be doing maximum of 50 hip revisions a year.
I also wonder why this surgeon has to order a specific extractor tool when he is doing so many revisions. Suggest you keep asking your surgeon questions until you are fully satisfied, before you proceed.
Good luck.

He does surgery 3 days a week-3-5 surgeries ea block-except for now the stryker rejuvenate specifically is going to take longer so only 2-3 a day. and I can only base my numbers on what his office manager/NP tells me.

The specific extractor is in response to his experience using/seeing the stryker made extractor in use-he does not like it, a doctor he observed in europe was using a tool designed by a doctor in MN, and he prefers that one. Remember this particular implant (the stryker ag and rejuvenate) are 4 piece systems by design, the femur portion, the stem and the ball are separate pieces and the part inside the femur is actually a "female" part as opposed to a male part as in most devices, so the extractor tool is different from say the zimmer or J&J, it was this modularity that was the best selling point of the hip, the "stem", the ball, and cup lining can all be changed without major revision surgery, it is also the reason this hip is a metal on metal as the "stem" is screwed in to the ball and the femur portion, whihc created a small amount of movement as thus the metal ion release, it is really a small small small amount of metal release as compared to the Depuy etc.

I dunno which doctor I would want doing what, as I read on these forums, there seems to be as many differences as similarities in regards to pre-op/op and post op. So I go with who i trust.

 

[RestAssured]

Having trust in your doctors is the most important thing! It sounds like you have asked all the right questions, and now it is time to get ready to start living the "best of your life", after recovery! I wish you well, and I will be praying for you '

 

[happyhopper]

Thanks for your response Cryinsham.
Boy, this surgeon is doing a lot of surgeries!! From your comments is he doing a lot of revisions of the Stryker Rejuvenate?
I have just googled Stryker AG rejuvenate and there is an entry under WWW.Ury&Moscow.com saying that the Rejuvenate modular hip system is recalled as a large number of implants are failing within 5 years due to metallosis. I assume you are aware of this? Is this your present implant? The original selling point of this implant may be what is causing the problems!!
I know from personal experience and a lot of research that the well known and trusted surgeons in England and the USA are revising to implants with LONG ESTABLISHED PERFORMANCE RECORDS and most are using a Ceramic on Poly cup with a titanium stem, (ie no chromium cobalt) where there are signs of metallosis.
I have also met a patient recently who has bone loss in the femur and the surgeons are making her a custom made implant.
I was under the impression that you had had a resurfacing or a metal on metal total hip, so surely there will be no metal liner.
I have recently been revised from a MoM hip resurfacing to a THR (the whole implant was revised) and I went through a lot of surgeons until I found one who gave me a diagnosis I was happy with, an implant that had a good record and gives me the best chance of a good outcome. I also chose a surgeon who wasn't doing an enormous number of surgeries and who I felt had good judgement.
Sorry, to keep firing information and questions at you at this difficult time, but the pre-op investigations and the right implant for you are so important for the long term. I have also listened to the strong recommendations the administrators on this site have given you.
Best wishes
HH