Revision THR Complex Revision poor outcome Ehlers Danlos

[myglasshalffull]

My gosh, isn't the healthcare/insurance hamster wheel frustrating???
We pay our entire lives into Medicare hoping once we retire we are covered. I realize Medicare only covers 80% of hospital and we require a rider policy (which I have), but after working 40 plus years you would think we could write our own ticket for rehab, hospital and general care.
I think entire system is in disrepair.
I wish you the best, your journey has definitely been a marathon.

 

[Flowerfloosey69]

My gosh, isn't the healthcare/insurance hamster wheel frustrating???
We pay our entire lives into Medicare hoping once we retire we are covered. I realize Medicare only covers 80% of hospital and we require a rider policy (which I have), but after working 40 plus years you would think we could write our own ticket for rehab, hospital and general care.
I think entire system is in disrepair.
I wish you the best, your journey has definitely been a marathon.

I was told by my case manager from the hospital to re-examine my coverage during open enrollment. We live in a small mountain community the Medicare advantage plan is not available here, but I'm not sure what "advantage" it would have for us?

I've had several major surgeries and have had no out of pocket expense, so this episode was a big surprise!

 

[Flowerfloosey69]

I am recovering very slowly from this third surgery to clean out infection. I am on my 7th day of going to the infusion center. Not looking forward to the 3 days I will ha be to go to the ER for the infusion because the center is closed on the weekends.

My stamina doesn't seem to be improving. I'm very discouraged

I found out yesterday as I had my appt with my primary care doctor, that the infectious disease doctor has decided that I need to stay on Doxicycline for 6 mos! It's so very hard on my GI!

I'm trying so hard to be positive but it's really hard right now..

 

[Flowerfloosey69]

My gosh, isn't the healthcare/insurance hamster wheel frustrating???
We pay our entire lives into Medicare hoping once we retire we are covered. I realize Medicare only covers 80% of hospital and we require a rider policy (which I have), but after working 40 plus years you would think we could write our own ticket for rehab, hospital and general care.
I think entire system is in disrepair.
I wish you the best, your journey has definitely been a marathon.

I too have Medicare part AB D and F. This is so hard to understand why they would rather pay for a rehab center over me doing this at home. We were never given the choice.

 

[Flowerfloosey69]

Thank you to all for your encouragement!

 

[Klassy]

Hugs and love to you Flower. I am so sorry to read about your struggles with the healthcare bureaucracy on top of all the other things you have to cope with. I am keeping everything crossed for you that you will begin to see improvements soon.

 

[myglasshalffull]

Flossy,
Seems ridiculous that they are requiring you to go to them for this service. You are trying to get better and I'm sure doing this at home would serve you better.
6 months is quite a long time to be on any antibiotic, I'm wondering if it's an abundance of precaution???
I was surprised that all my expenses were covered for my hip surgery given the fact I was on vacation when I needed the surgery. And took 3 ambulances to get me to the hospital so certainly thought I'd be charged for that but all I had to pay was $150. I really thought I would be wiped out financially but thank goodness medicare and my Blue Cross came through.
I can only imagine how discouraged you must be feeling. Hopefully this will sort out and in a few months you will be feeling much better.
I certainly wish you the best.

 

[Flowerfloosey69]

Flossy,
Seems ridiculous that they are requiring you to go to them for this service. You are trying to get better and I'm sure doing this at home would serve you better.
6 months is quite a long time to be on any antibiotic, I'm wondering if it's an abundance of precaution???
I was surprised that all my expenses were covered for my hip surgery given the fact I was on vacation when I needed the surgery. And took 3 ambulances to get me to the hospital so certainly thought I'd be charged for that but all I had to pay was $150. I really thought I would be wiped out financially but thank goodness medicare and my Blue Cross came through.
I can only imagine how discouraged you must be feeling. Hopefully this will sort out and in a few months you will be feeling much better.
I certainly wish you the best.

It really doesn't make sense to me. My only choice was to go to a horrible rehab and when I refused, they said I would have to go to infusion center. So when I relunctantly agreed to that, they said if I could leave home for that, I didn't need a visiting nurse. I wish we had been in a different mindset. The nurses were already teaching me how to connect to my pic-line!

 

[spaniel]

I wonder if you could speak directly to the infectious disease doctor. Better yet- if you could actually see him! With this said, I am glad you are being followed by an in infectious disease doctor (if I am reading your post right). And yes, the insurance industry (and it is an industry) is in upheaval. I tried to get an appointment with a well known orthopedic doctor and he takes no Medicare whatsoever- all cash business. And I shall add we graduated from the same school/literally the same hospital buidling! Even though the infusion center sounds like a real road trip, i would also prefer this route over a rehab place for sure. May I ask how long are they doing the Vanco for? Lastly, know that people care and that others who follow your post are amazed by your resilience.

 

[Layla]

I'm so sorry to read of your struggles @Flowerfloosey69
Not what you need on top of all else. Sending a hug and best wishes for much brighter days ahead.

 

[Flowerfloosey69]

I wonder if you could speak directly to the infectious disease doctor. Better yet- if you could actually see him! With this said, I am glad you are being followed by an in infectious disease doctor (if I am reading your post right). And yes, the insurance industry (and it is an industry) is in upheaval. I tried to get an appointment with a well known orthopedic doctor and he takes no Medicare whatsoever- all cash business. And I shall add we graduated from the same school/literally the same hospital buidling! Even though the infusion center sounds like a real road trip, i would also prefer this route over a rehab place for sure. May I ask how long are they doing the Vanco for? Lastly, know that people care and that others who follow your post are amazed by your resilience.

Thank you so much for your post!
They took me off Vanco at the end of my hospital stay thankfully. Since we live in a Sierra Foothill town in Calif, our specialist physicians are so limited. There is one infectious disease doctor for our whole area who doesn't even live here. They act only as a consultant.
I found out this week that they are going to leave me on oral Doxicycline for 6 mos! My primary care doctor was not necessarily in agreement with that. It is playing havoc on my GI!

I'm so sorry that you cannot use your preferred OS. It seems the high volumne Ortho surgeons who are so sought after, can call their own shots and some who work on patients that fly in from all over the world have no reason to deal with Medicare patients. The infusion center is not far from my home.. thankfully. It's getting a bit easier as now I am over two weeks since my surgery.

I so appreciate any and all encouragement that is afforded me here on Bone Smart!

Thank you again!

 

[Flowerfloosey69]

The Antibiotic that is being infused is cefTriaxone 2gms IV Daily

 

[Layla]

I hope your physician recommended a high quality probiotic with instructions on how to dose while on antibiotics also in an effort to protect your gut health.

 

[Flowerfloosey69]

They put me in a probiotic but just over the counter. Is there a difference?

 

[Flowerfloosey69]

I hope your physician recommended a high quality probiotic with instructions on how to dose while on antibiotics also in an effort to protect your gut health.

Would love to delve into the subject of probiotics.. for infections post op during recovery when taking antibiotics.

 

[Layla]

Personally, I feel there are crappy supplements, just as there is crappy everything else. If it were me, I'd look for a reputable nutritionist to assist you in finding high quality supplements as well as advice on how to protect your intestinal tract where so much of our immune system lies.

I've read that fermented foods like sauerkraut, coconut kefir and kimchee are help support natural bacteria replenishment while on long term antibiotics. Also, sugar, both natural and processed is a feast for the bad bacteria, so I guess I'd avoid that when possible. Hopefully with lots of rest, good hydration, a clean diet and stress avoidance time will fly, you'll thrive and this will all become a distant memory. A prayer to that end. A prayer for perfect healing. We're here for you always and we care.
@Flowerfloosey69

 

[Flowerfloosey69]

Personally, I feel there are crappy supplements, just as there is crappy everything else. If it were me, I'd look for a reputable nutritionist to assist you in finding high quality supplements as well as advice on how to protect your intestinal tract where so much of our immune system lies.

I've read that fermented foods like sauerkraut, coconut kefir and kimchee are help support natural bacteria replenishment while on long term antibiotics. Also, sugar, both natural and processed is a feast for the bad bacteria, so I guess I'd avoid that when possible. Hopefully with lots of rest, good hydration, a clean diet and stress avoidance time will fly, you'll thrive and this will all become a distant memory. A prayer to that end. A prayer for perfect healing. We're here for you always and we care.
@Flowerfloosey69

Thank you Layla. I am going to look into a good nutritionist! I really need help in this area. We don't eat right and I am prediabetic.
Stopping all my vitamins was not helpful either! I appreciate all the help and encouragement thru this journey I am on! It means the world to me!

 

[Flowerfloosey69]

Hi,
We have very similar stories if you look at my signature. I haven't been diagnosed with E-D but they have checked several times. I have always been very hypermobile. It has caused problems with my hip and knee replacements and revisions with the first line surgeon always tightening as he was use to and then needing to be revised. For my first RtTHR I dislocated 3 times (1x/month) My surgeon was great and said 3 times and it's out, meaning after 3 dislocations something else has to be done. On the totally hip website there were people who had dislocated 10 times and their surgeons wouldn't do anything. I always read up a lot before surgeries and we discussed what could be done. He repositioned the cup and put in a bigger ball with a constrained liner and that did the trick for 13 yrs, just like you. Then the pain started. I was set with the new and younger partner and he ordered xray and said he couldn't see anything so "wait and see". Then I got up from a chair and had a horrible pain in my rt buttock. I lay in bed for 4 days before I could even think about going to doctor. As I was walking across the garage to the car, I had a horrible pain just above the first spot. I insisted on seeing my original surgeon who was about to retire. Being much more experienced, he did more xrays from different angles and said "Particle disease and 2 fractures of the upper and lower rt pubis ramus." Particle disease is when the liner (constrained means has to be plastic) starts to wear and the immune system draws calcium from the bone to encapsulate it, thinking that stops any harm. But it has in effect started osteoporosis in that leg. The fractures were because of the weakened bone.

To stop here, with your liner breaking apart, I'm wondering if the same thing happened to you and it could explain your incredible pain as well complicated by your E-D

My surgeon said he couldn't do the revision because the hospital didn't have a trauma surgeon that was on call for the operating room and my pelvis could break apart and I'd bleed to death. So I did my research and found a surgeon at the Virginia Commonwealth Hospital (always look for a teaching hospital) that specialized in hip and knee revisions and VCU had trauma surgeons on call for both operating room and ER.

The original replacement was Biomet but this surgeon normally used DePuy. Since he didn't want to change the whole thing, he replaced the Biomet liner and that was it, He went in and took out 4 of the screws and packed behind them with cadaver bone to hopefully fill in the holes. The cup was firmly imbedded and 1 screw was enough to hold it in. The ring on the constrained liner was broken so he replaced that. The ER doc got it back in, we thought. It was her first one so she didn't know quite how to read the final xray. I dislocated again 6 months later in a slip (also dislocated my rt elbow by hitting it on a rock but that's my current dilemma). I went to VCU ER this time instead of the local hospital. I took my xrays from my previous dislocation with me. My surgeon's attending looked at them and called the surgeon. The ER doc had not gotten it all the way reduce. My surgeon was astounded that I'd been walking on it with no problem. The ring had kept it from going all the way in. My surgeon said I had to have a total revision and I was admitted. Hip revision on Monday and elbow surgery on Friday. At the 3 month followup my surgeon noticed my rtTKR looked a little loose. I hadn't noticed it but the prothesis was letting my knee hyperextend. That was the reason for 4 falls and dislocations. He wanted me to get the elbow fixed first for stability on the walker. I had two elbow surgeries trying to get it back in socket but it didn't work and I was told my only option was leave it like it was or a joint replacement. I fell again and dislocated the hip again so we decided to go ahead with the knee revision.. Thank heavens that did the trick and i haven't fallen since. I'm lucky in that even at 67 I heal fast with little scaring and have a high pain tolerance.

This is a long story, but I'd encourage you to ask about particle disease and could that be part of your problem. I'd also ask about constrained liners. My surgeon said if not for the particle disease, I could have gone at least another 5 yrs, but constrained liners have to have plastic liners so there nothing to be done about it. I hope this helps give some insight into your problem. With diagnosed E-D I can't imagine them not going with a constrained liner for you. Best of luck!

Pairodocs, thank you so much for this long informative post. Sounds like you have been thru a ton too. I thought all liners were plastic but I'm thinking, maybe ceramic? That's what I was told originally.. but it ended up not being that when he got in there. I asked specifically

The liner came out in three pieces.. so lucki
I'm just wondering how much

Personally, I feel there are crappy supplements, just as there is crappy everything else. If it were me, I'd look for a reputable nutritionist to assist you in finding high quality supplements as well as advice on how to protect your intestinal tract where so much of our immune system lies.

I've read that fermented foods like sauerkraut, coconut kefir and kimchee are help support natural bacteria replenishment while on long term antibiotics. Also, sugar, both natural and processed is a feast for the bad bacteria, so I guess I'd avoid that when possible. Hopefully with lots of rest, good hydration, a clean diet and stress avoidance time will fly, you'll thrive and this will all become a distant memory. A prayer to that end. A prayer for perfect healing. We're here for you always and we care.
@Flowerfloosey69

Thank you Layla. I am going to look into a good nutritionist! I really need help in this area. We don't eat right and I am prediabetic.
Stopping all my vitamins was not helpful either! I appreciate all the help and encouragement thru this journey I am on! It means the world to me!

i still have Anterior precautions for 4 more weeks. I'm limping quite a bit and am so stiff when I stand up. Living thru all of this and now almost 4 weeks ( this Friday) past the dibridement surgery.. I'm wondering if this constrained liner is going to work. I really need exrays taken, but that seems impossible for several reasons.

 

[Jamie]

I learned about probiotics from my excellent pharmacist. It does make a difference which brand you buy as they tend to deteriorate when they sit on the shelf. You want one that is refrigerated at all times. They are obviously more expensive, but I really benefited from the one I was on for a while when taking antibiotics.

 

[spaniel]

I hope you continue to be on the mend with this incredible journey. After all you've been through i certainly would imagine that you would still be sore!