THR Need a friend who has been on the other side of a late infection

[HappyHippy]

Barbie,

I'm glad you started the Gabapentin. I hope it helps you as much as it does me. Let us know If it gives you some relief. It can be sedating, and slow down your brain, so it may be good for anxiety. I take extra when I have more pain, and nap, but so what ... I'm not working.

I wonder if the rash was a reaction to your Cortisone shot. Sometimes they inject the Psoas bursa to see if you have an impingement in the prosthesis. Mine worked a short while for pain, as I had an impingement and a loose stem. I had a femoral nerve block too that about killed me, it hurt so bad. The trial and error they put you through when the replacement goes wrong is maddening!

I may have said it before, but it seems like they put you through at least 2 years of suffering before considering a revision unless there's an obvious infection. And I feel for you, as the constant pain can consume you and take away your life. I had many a day where I was so depressed that I wondered if I could go on with such pain. People do pull away when you're in pain, which doesn't help. I think they feel helpless and get tired of hearing about our pain. I joined a chronic pain support group, and where I swim has lots of people with similar problems, so I had some support. Do you have access to a pool? That's been my best non-drug pain reliever before and after surgery.

I don't know where you live, but I'd consider seeing a Orthopedist in a large metro area if you're not in one. By large, I mean over 500,000 people in the city. The Orthopedists in smaller communities are using the same Hospitals and often covering for one another, including mistakes. Jimbo, another person with a botched replacement had to do that, and I did too, to get a satisfactory revision.

You may not get completely "well" as I'm finding that lots of people have pains just from aging. If you have nerve damage, it may not go away. I'm not well, but I am better. I'm 3 months out from my revision and have a habit of overdoing too which I pay for, so in another 3 months I may be way better.

Hang in there, Barbie. Someday soon you'll find the Dr. who says to take the darn thing out and fix your problems.

HH

 

[BarbieJ]

Oh HappyHippy I hope you are right and I have hope to get a better outcome one day. I cannot tell you how spot on your comment here is. My best friend told me she misses the old Barbie and my twin sister is now taking a break from talking to me. This brings them down and they feel helpless. If it weren't for my friends here at Bonesmart, I don't know how I could handle all of this by myself.
I no longer dream of my good recovery, I just want to achieve some kind of life, and be walking with a cane but be managing my pain well.

You are right. Anyone know of a good revision OS in Chicago? I may look there if Mayo doesn't work out.

 

[Quee-Knee]

I no longer dream of my good recovery​

Barbie, I know you are full of despair right now....but please dont give up......you still have several more doctors which are some of the best in the world at Mayo waiting to see you! And IF that doesnt work out or you want another opinion....Rush University in Chicago has an excellent reputation.

 

[tashia]

I do hope this gets rid of the pain so you can think. I think of you often and every time I do I send a pray your way. Please keep me informed. Take care and hug your dog today. Tashia

 

[glynis]

Dear Barbie J

I imagine I speak for many, if not all, of those who respond to your thread, when I say that I wish I could suggest something which would be a genuine help to you, as you try to get on top of the many problems you are currently tackling. I know you have had some good ideas put forward by those with genuine medical knowledge, and I hope some of those suggestions have been useful.

However, it has always been a concern me on Bonesmart, that I feel it is sometimes too easy for contributors to jump in with strong opinions, when in fact we can only really touch the surface of each other's specific problems. With all due respect to Happy Hippy, I don't think that comments such as "Someday soon you'll find the Dr who says to take the darn thing out and fix your problems" are quite appropriate.

You may need a revision. You may not. I don't think even the most knowledgeable medical expert contributing here would make such a sweeping statement without meeting you, discussing everything, and examining your test results, X-rays and so on.

I know you have a dermatology appt coming up, and I think, also a neurology appt? As someone else said, do take photos of any rashes you currently have. I feel sure that would be a big help to the dermatologist especially.

Keep us informed.

Glynis

 

[BarbieJ]

My rash.

 

[BarbieJ]

glynis, I do not mind any and all comments. Absolutely no one knows what's happening and I am coming to the realization that I may need to have this hip out. No doctor has confirmed an identifiable problem. My general intern did not know what my rash was. The photo is the side of my hip. I did not show the front where my scar is mostly because it is tough to photograph without showing too much.
I would be ignorant to not think that the possibility of losing this hip was there.
The photo shows me after 5 days of abx, and is fading lightly but not going away. It is painful.

HappyHippy, I wish I wasn't in the twilight zone and I would appreciate finding someone who absolutely knew exactly what was going on with me. You have been through the search for answers and its scary. I knew a mother of a boy on my sons soccer team who found out she had bone cancer in her leg near her knee. One day she told me she was to have her leg amputated to control the advancing cancer. She said to me, Barbie I can't wait to have this thing off. I could not possibly understand her then. She died a year later. The aggressive treatment did not save her. The will to live is strong and I want to live my life. I am not going to do a revision unless it is necessary, but I would absolutely want to get rid of an infection if this turns out to be. Problem is, I am constantly taking an antibiotic and I wish someone could help me figure this out.
My point here is, my problem is obviously a challenging one. Thank you to ALL of you for your thoughts. All are welcome.

 

[special lady]

Barbie,

Which orthopedic did you see at Mayo? If you don't feel comfortable saying which one it was, I understand. My orthopedic that did my revision there is Dr. David Lewallen. If you haven't already I strongly suggest you put a call into the Orthopedic you saw, and ordered the needle aspiration/cortisone injection and the dye they always inject as they're signature since the rash appeared the day after if I recall correctly. Since the rash is around your hip, is all the more reason I'd put a call into the orthopedic you saw at Mayo. Also, if you didn't see Lewallen I'd request an appointment with him. He has a great amount of experience in complex hip revisions.

My best to you

 

[HappyHippy]

Barbie, you may need a revision for reasons other than an infection. But certain types of nerve pain can feel like one. As I shared, I often thought I had a simmering infection, or that my body was allergic to the metal. It's the Meralgia Parasthetica in my case that causes the feelings. It's a type of nerve damage more common with Anteriors.

 

[BarbieJ]

HappyHippy
That's the thing. I have not just pain, or start up pain or only when sitting pain, etc, but pain no matter what I do. Also, it's also the itching and stinging and burning all over my hip every single day is enough to drive a person insane. One other thing. Since my condition is deteriorating quite quickly, i can forecast that at this rate, I will be spending life in a wheelchair since I cannot bear to put weight on my leg. I am not willing to be in a wheelchair if I have a chance to walk again. Also, being on antibiotics is giving me a little more ability to walk. I can walk around my house without my cane. Outside of my house, I need my cane. This Saturday before I went to ER and put on abx, I could barely walk even with my cane. The best thing I can relate my pain to is contractions when you are going to have a baby. They come off and on and are intense when you are in one to the point of dropping to your knees. I remember hearing some women scream in the labor area. I didn't make a peep, but it didn't mean that I did not have painful contractions.
Actually, I can fall asleep with ice packs and sleep very well for about 4 hours.
I think I am not in the 2% club. I think I have now graduated to the less than 1% club. I always have to be a one upper!

 

[Josephine]

Not sure if you're aware but in the end they inject a dye in all patients...it's just to prove they were in there and they take a photo with the dye present

special lady[/USER] I really don't think so. They would inject dye to show up any sinus tracts or other connected cysts. I would be most horrified to think any doctor would inject a person with any substance simply for proof they were there! Outrageous!

My symptoms are extreme stinging burning of rash with increased pain when weight bearing. Ten days of cephalexin taken orally 1000 mg two times a day. Is this suitable to get rid of cellulitis. I was sweating and then chills and rash was very painful. Is ten days enough?

Honey, everything you've said there says cellulitis to me. And in no way is ten days enough to get rid of it. Admittedly mine was much more extensive but I was on antibiotics for three months!

The photo is the side of my hip. I did not show the front where my scar is mostly because it is tough to photograph without showing too much.

Barbie, your photo is much too small for me to see anything. It's only 114 pixels wide, not much bigger than an avatar! I need it at least 800 pixels. If you would do another of that size and also one of your scar, you can send it to me in a pm and if it needs editing for (ahem) reasons, I can do that for you.

 

[special lady]

@Josephine consider yourself horrified then because I'm 100% positive of them using the dye as proof the needle was in the correct placement within the joint, they inject after the aspiration & cortisone is complete, then take a floroscope photo. I asked a lot questions in regard to their procedure and protocol after the needle aspiration and cortisone injection because of the end injection of dye. As my needle aspiration and cortisone injection did not require any sort of contrast, and the radiologist explained to me in detail why they use the dye substance....He also stated it gives a complete explanation of why, and the use in the form signed by ALL patients prior to procedure, which I didn't read because I knew what a needle aspiration and cortisone injection was and how they preform such. This is why I strongly suggested Barbie to call the Orthopedic Doctor in which she consulted. I would never state such if I wasn't 100% certain, so there would be absolutely no harm in calling, especially since the rash started the day or day after cortisone injection. ​

 

[BarbieJ]

Josephine and special lady[/USER], I do have an ink color on the spot where the aspiration was. Just a pin dot size. If it were a superficial skin rash from iodine or some antiseptic, then why would it start 24 hours after only on the surgical scar. Then 48 hours spread like branches out across my backside and down my leg. Also the pain is not just superficial. It is intense deep sharp pain deep into my thigh. The area where m surgical scar is gets intense lightening bolt deep pains.
I don't expect any answers from anyone, I am just extremely frustrated at the casual way my doctor here treated me yesterday. I am feeling the pain moving into my personal areas which is horrendously painful.
I have come to the conclusion that no one here has the experience to make any correct diagnoses.
Btw, this has been part of my problem since the start of my journey. I do not feel that the medical community understands what is happening to me.

 

[BarbieJ]

When I say "here" I mean where I live, not this forum. Sorry about that. I envy those of you who live in large major metropolitan areas with top notch research hospitals.
It's hard to travel hours and hours to a good hospital. Because treatment still depends on your expertise of your general intern or local OS after you return home.

 

[special lady]

BarbieJ

My heart goes out to you, your in my thoughts and prayers. The dye they used wasn't an ink mark, or iiodine. Prior to the radiologist removing the needle is when the dye was injected. I will go onto my Mayo Clinic account tomorrow morning, all the reports from radiology, lab, pathology are available online for patients. Maybe the radiology report will give me the exact substance used as dye will be in the reports.

Josephine ...can pts have a reaction to cortisone? Barbie please call Mayo clinic Monday to inform them of this rash....it won't hurt to call, they've been very good about following up with me, and returning my phone calls. Not sure if you have the phone number of the orthopedic surgeons secratary, but you can call and ask to be connected to his secratary, and explain the development 24 hours after the aspiration and cortisone injection. I'm certain they would want to know.

 

[Josephine]

can pts have a reaction to cortisone?

Very rarely. I have discussed this with Barbie ex-fora and told her I think her skin problem is from the skin prep used when she had her injection. The pattern of the stripes confirms that. I think she has two issues going here, the skin problem and the pain. She needs to get that addressed first and then see what's left behind.

 

[special lady]

Josephine the skin prep does make sense, they did use the type that was on the end of a stick about an inch wide on me, and as your well aware they apply it all around the area and beyond what one would think need be, and did seem to fan it outward.

 

[BarbieJ]

special lady[/USER], I did call my OS at Mayo when the rash appeared and for three days consecutively. I spoke to thePA to my dr and he said he didn't know what the rash could be but expressed concern. I will activate my online Mayo account tomorrow to see what I can find out.
I will also call them Monday.
My concern is that my pain level is far beyond that of an every day rash. A rash doesn't cripple a person. Oh well. Thanks for the direction you are providing. I guess I have more to add to my list of allergies.
Or at least that's what I am hoping.

 

[Josephine]

As I said, Barbi, you have two issues going on here and they are getting muddled. The 'rash', by the way, is more like a chemical burn which can be long lasting and very painful.

 

[special lady]

BarbieJ

It is amazing how we can simply develop an allergy out of no where, two years ago I had a anaphylaxis reaction to penicillin, and over my life time I had taken it probably at least a dozen times. I haven't found an adhesive that I can tolerate more then 6 - 12 hours now either, not sure if its considered a skin sensitivity or allergy, but I start to blister after a few hours.

I was pleased to find out I could access all the reports, lab results, pathology, Doctors notes, etc....the only report I can't access online is my operative report. Anyway, the web page is very easy to navigate.

I have to tell you, although the Doctor diagnosed the problem with my hip during my first visit to Mayo, once he was in the OR he found additional problems that weren't found in any of the test done. So I agree with HappyHippy an OS may have to do an arthroscopic or open surgery to look around to find the answers.

Another option if you don't get any solid answers from Mayo, you can contact Dr. Joel Matta and request that he look over all your films, reports, and a brief history written by you. He will review everything and give you his opinion and advise. I sent all to him myself, he confirmed what was going on in my hip, and let me know I could make an appointment with him and have him do the surgery, or go to whomever I preferred. I sent him everything after I was advised I needed my 2nd revision. His contact number is (310) 582 7473. He takes on complex cases, and is well known as one of the best revision specialist. He does not charge a fee to review, give his opinion and recommended treatment.

Keeping you in my prayers.