I never post from work, but I have a serious WWYD

[zoidberg]

***update in replies***

and I just can't wait until I get home today.

This is going to be long. Long. Back out now if you don't want to read a novel.

First, some background that will help you understand why this is causing me so much angst.

I have celiac disease. It took me TEN YEARS to get properly diagnosed. A full decade between the day I went in for my first endoscopy (during which they looked no further than my stomach and told me it was, and I am dead serious, "just stress") to the day I finally got a positive diagnosis. My medical chart looks like a phone book. I went to so many doctors and every test was negative. Then the skin stuff started. If you have a strong stomach, google image "dermatitis herptiformis". It's gross. Huge patches of weeping, insanely itchy rash. All over me. Hands, elbows, knees, ankles, low back/butt. I lived with this for almost 3 years. I went to at least 5 different doctors, was given more than 20 courses of antibiotics, several courses of prednisone, and assorted ointments. I was told it might be dermatitis from using the wrong soap, the wrong detergent, the wrong lotion, etc. I wore long sleeves and jeans all summer long because my skin was so horrific and I could see people staring at me in disgust (I couldn't hide my hands). I was more miserable than I have ever been in my entire life, both physical (the intense itching kept me up at night and the sores would weep through my clothes) and emotional. Finally I went to yet another doctor who flipped through my phone book chart, put it down, and then gave me the ultra-sympathetic look before saying, "You have seen x,y,z doctors and none of them have been able to find anything physically wrong with you. If they didn't find anything, I know that I won't find anything. The skin can be like a mirror for our emotional state, and sometimes skin problems are really physical manifestations of emotional turmoil. I would like you to consider seeing a therapist to try to work this out."

I went home and cried and cried, and then didn't set foot in another doctor's office for more than a year. Finally I had to go in for something else (I think I was sick, can't remember) and the doctor took one look at me and said, "I am going to run some tests, your rash looks very suspicious to me. How long as this been going on?" She got it right. Finally.

But all of that has given me a complex. It was so horrible. I have a deep, desperate fear of ever having to go through something like that again.

Which brings me to now.

I have been having a hip issue. I have had very intermittent mild symptoms of it for many years, but so mild and intermittent that I figured it was just kind of normal aches and pains that people have. Then last fall it started picking up when I was training for my first 15k. After the race I backed off running for a while and it started to recede. Then in spring I was training for a half and it flared up again. Got through the race, backed of running for a little while again and it was mostly ok. It was twingey, but not terrible. Then once I was training for another half during the summer, it FLARED UP. Fo' real. And it's been bad ever since.

Ok. Went to the orthopod. He told me hip bursitis and sent me to PT. Went to PT for almost 2 months and it did not get better. Went back for my follow up with the orthopod. He said it sounds kind of like a labral tear. PT also coincidentally has a labral tear and was able to exactly describe every symptom I have had, the weird little things I do to relieve pain (which I had never told her) that she also does, and some things to try to help relieve it until I can get it taken care of. I also read about it, and it sounded EXACTLY like what I was going through. Like someone had written about me.

So I go in for my MRI (which was ordered without contrast, btw). Go in 2 weeks later for my follow up.

This is what happened. He came in and told me that, good news! MRI was negative, absolutely nothing showed! (which to me does not seem like good news because something is fucking wrong with my hip, but I digress)

So I said, but that can't be! I have exactly all of the symptoms! It still hurts!

He then did the leg movement exam again, with identical results.

He asked me where exactly it hurts (we have been over this, but I understand that he has many patients and can't remember everything).

Then he said that there is something called iliopsoas tendonitis, maybe it's that, let's jab some big needles directly into your hip capsule** and see what happens. Come back in 2 months.
**Fluoroscopy and cortisone shot into something

*this is where I start crying*

He tried to reassure me by saying that if this works, I might not have to have surgery (not mentioning what will happen when the cortisone shot wears off), but actually I will still probably have to have surgery. Labrum doesn't really show on MRI, so there is still a significant chance that I do have a tear. If the cortisone shot doesn't work he will have to scope my hip anyway and then will be able to see what is going on. But instead of getting it taken care of now, it will be sometime in January.

And then he was gone. (This place is SO overbooked. My appointment was at 2:30pm and I finally saw him at about 4:05. This happens every time. He spends literally no more than 10 minutes with me, which is bad because I am not a fast thinker in these situations so I can never think of important questions until I am already on my way home. Especially when I was totally unprepared for what he had to tell me.)

This left me sad and confused, and then later pissed off. So I read about iliopsoas tendonitis and it sounded nothing like what I feel. But then I discovered that there is a thing called snapping hip syndrome, also known as iliopsoas syndrome which can apparently cause labral tears.

Is THIS what he was trying to tell me?

I am so confused. And for real, I have deep doctor trauma from what I went through trying to get diagnosed before and this is making me feel panicky. I am terrified that I am going to go through all of this testing, therapy, appointments (none of these things are cheap, either) and still end up in pain with no answers. I am also scared to death of needles so the further suggested testing sounds like medieval torture to me.

So, WWYD?
1) Continue as planned. Go through with the big needle jabbing, wait until January for follow up
2) Go through with big needle jabbing, but go to a different clinic/doctor after that
3) Skip big needle jabbing and go to a different clinic/doctor
4) Try to get in to see current doctor and attempt to ask questions before doing anything else
5) other?

[sadlebred]

Is this a sports ortho? Do you live in a town big enough to have multiple sports ortho practices? The first thing I'd do is get a second opinion; you can request copies of your MRI and other tests to take with you. This doctor does not sound like someone I'd want treating me.

*hugs*!!

[lovesherheels]

Honestly? I'd be pretty uncomfortable with someone treating me who couldn't spend more than 10 minutes with me to make sure I had all the information I needed -- AND that I understood said information. I'd bail to a new doctor if possible. Skip the needle-jabbing treatment until you get another opinion.

Also, I'm so sorry that you went through so much with your celiac's diagnosis. That sounds awful. And I'm really sorry you're dealing with this now. ((hugs))

[emilyinchile]

Are there any major downsides/side effects to the needle jab? If not, I'd go ahead with that in the meantime and look for another sports med doctor for a second opinion/future treatment.

I'm really sorry. I've had chronic pain with my back and have never fully dealt with it because it would be a huge amount of trial and error that I'm just not up for. It's mostly under control, and I'd rather deal with the occasional painful day than with months of trying X, then Y, then Z, all with no guarantees. So I get it to a certain degree. Good luck!

[mrs.jacinthe]

Ok, so I read the whole thing. As someone who works for an ortho, I have the following take-aways:

First, I can understand the needle fear; you can always ask for a sedating/calming medication prior to the procedure, if that will help you.

Second, if you don't like the guy's bedside manner, look for someone else. Be aware that sort of thing is fairly common amongst orthos, though - the god complex - you may need to try a couple other doctors or ask friends for recommendations.

Finally, please please ask questions. Most orthos will happily set aside a period of time for a patient who has questions prior to a procedure. And if the doctor is too busy, ask to talk to the nurse about it - most orthopedic office staff know almost as much as the doctor about procedures. Go in with a list of questions. Ask if there's a possibility the slices on the MRI were too wide and a labral tear could have been missed. Ask what the % of people who have surgery after the diagnostic injection is. Ask if you can be sent for MRI over-read and a second opinion.

It's possible he wants to exhaust conservative care with the injection in order to convince the insurance carrier to approve the surgery. Sometimes doctors have to order crap that TOTALLY ISN'T NECESSARY, but because its what the carrier wants before they'll approve surgery, the doctor does it. It's also possible he's a jackass. Do you know any nurses who'd work with orthos and their patients at the hospital? Those are the best people to ask for an opinion of the guy or a referral to a new one. LOL

[Deleted]

Did you ever get in to the sports chiro?

[Deleted]

I would get a second opinion. Me personally, I wouldn't go with the needle jabbing until after I got the second opinion.

[mrsjthompson]

I can relate to your feelings about doctors, how you can go see every one out there and still have no diagnosis. How they make you feel silly and unimportant and how they rush through appointments. And I'm really sorry you're having to go through this. That being said I can tell you two things:

1. My sister had labrial tear surgery last fall. Hers didn't show on the MRI and she went into surgery terrified they were cutting on her and nothing would be there. But it was. Be persistent with your doctor, and if you can't get the answers you need, see someone else.

2. Doctors tend to talk very fast and in language that we're not necessarily familiar with. I get frustrated because it seems like I can't communicate with them and tend to start crying, or don't hear everything they are telling me because of panic/questions. If its at all possible, take somebody else with you to the appointment. Even if you and your doc do all the talking, the other person can be another set of ears on what the doctor is telling you and help to make sure you don't miss anything.

I know its a PITA to keep seeing different doctors, but I would try someone different before I went the giant needle route. Of course, I'm a needle-phob.

[Susie]

I would really encourage you to get a 2nd opinion before any treatment, injections included. I forget, do you have a running group/community/club, etc. that you can ask for a rec? My tri club is a veritable WEALTH of opinions and recs on docs, PTs, sports massage therapists, etc. (Actually, my sports doc and my PT are in my tri club.)

I told you before, I had labral tears in both shoulders about 10 years ago. I never had an MRI w/o contrast to say whether it would have shown up, but the MRIs that dx'ed it were with contrast.

[sassystace]

Sorry you are going through this mess. I would get a second opinion before the needle jab procedure. Can you ask your PT who his/her doctor is? Maybe you want someone with more expertise in hip or this particular problem.

[zoidberg]

Nov 15, 2013 14:05:32 GMT -5 mrs.jacinthe said:

Ok, so I read the whole thing. As someone who works for an ortho, I have the following take-aways:

First, I can understand the needle fear; you can always ask for a sedating/calming medication prior to the procedure, if that will help you.

Second, if you don't like the guy's bedside manner, look for someone else. Be aware that sort of thing is fairly common amongst orthos, though - the god complex - you may need to try a couple other doctors or ask friends for recommendations.

Finally, please please ask questions. Most orthos will happily set aside a period of time for a patient who has questions prior to a procedure. And if the doctor is too busy, ask to talk to the nurse about it - most orthopedic office staff know almost as much as the doctor about procedures. Go in with a list of questions. Ask if there's a possibility the slices on the MRI were too wide and a labral tear could have been missed. Ask what the % of people who have surgery after the diagnostic injection is. Ask if you can be sent for MRI over-read and a second opinion.

It's possible he wants to exhaust conservative care with the injection in order to convince the insurance carrier to approve the surgery. Sometimes doctors have to order crap that TOTALLY ISN'T NECESSARY, but because its what the carrier wants before they'll approve surgery, the doctor does it. It's also possible he's a jackass. Do you know any nurses who'd work with orthos and their patients at the hospital? Those are the best people to ask for an opinion of the guy or a referral to a new one. LOL

This is super helpful, thank you. I do have a lot of questions for him, but it takes me time to really digest the information and think of questions. I can never think of what I need to ask until I'm home after the appointment. This time I was all prepared with questions about the tear, because I really thought that is what he would tell me, and was completely unprepared for a negative result.

And thanks everyone else for your support. I'm feeling very emotional-baggage-y today.

I spent some time today with one of my almost-MD friends (she has completed medical school and internship, but is getting a phd before her residency) and she soothed me and gave me some good ideas. I am going to contact current doctor and ask some very specific questions, because he might *think* that he is explaining things to me and not realize that I have no clue what he is saying. I need him to explain to me exactly what he hopes this additional testing will accomplish and specifically why he thinks I have this other condition instead, and most importantly what happens if the cortisone shot does not work or wears off. I am also going to somehow figure out how to get a re-read on my MRI.

My PT actually really likes this guy, because she gets a lot of his hip patients, and that she would go to him herself (she is currently pregnant and can't have the surgery, plus she needs to wait until she has enough leave). She also told me that before him, none of the full hip replacement patients were even sent to rehab (!!!!), but when he came he changed the protocol. So I think he is a good doctor and he does seem like a genuinely nice guy, but I think a pretty terrible communicator. My dad is like that - you have to already know what he is telling you in order to understand him.

[AAM2012]

**hugs**

I also wanted to add that it may help to bring a 2nd person to your appointments that way they can also listen to what the doctor is stating and ask appropriate questions if needed. I had similar issues (celiac) and would walk out of the appointment having no idea what was said because I was so stressed out and upset so my husband started to go with me to some of my appointments and it helped a lot.

Also when I had surgery on my foot I asked to book another completely separate appointment the following week JUST to talk to the doctor about the procedure. My husband came with me and the doctor really took the time to sit down and explain the procedure to both of us and answered our questions.

[zoidberg]

Ok. I emailed the doctor with a list of questions (we sort of kind of work for the same place, and share a mail system).

I asked about 6 very specific questions regarding decisions that have been made, why he thinks it is psoas something or other rather than labral tear, what he is hoping to see with the fluoroscopy, why cortisone shot, etc.

And he explained everything. I feel SO much better.

What he did not tell me in the appointment is that the cortisone shot is actually diagnostic. Since the MRI did not show anything, there really isn't another way to tell what is going on aside from going in there with a scope to look. Because my symptoms overlap these two conditions, the cortisone shot is the easiest and least invasive way to tell them apart. He also clarified his comment that I could also have both things - sometimes the psoas can adhere to the outside of the hip capsule and cause a labral tear.

If the cortisone shot eliminates all of the pain, it means that it is iliopsoas and can probably be addressed by the shot and PT. If it takes care of only some of the pain, it means that I probably have a labral tear caused by psoas adhesion. If it does not help at all, then I probably have a tear from something else and it will have to be scoped.

Now it all makes sense, and I feel confident that there is a plan.

So it turns out that he is just a really awful communicator.

[mrs.jacinthe]

I'm really glad for you. Email is a great advance in medicine because it gives the doctor a chance to make sure that everything is correct. Nicely handled, and way to be an advocate for yourself!

[gt7301b]

I don't have any advice, but I am glad you are getting answers to your questions.

[foundmylazybum]

Hmmm...You know, I would get a second opinion before proceeding. You won't be losing too much by doing this, and recently I've seen a few "labral tears" that were not...and it was only through careful diagnosis that the actual problem was found (stress fractures).


I know that you are afraid of sprialing into a similar situation that you had with your celiacs...but as awful as that situation was, and it sounds horrible--you also learned a lot: when to say when, and I would guess that you will know the limit this time. You know how to advocate for yourself as a patient so much more now Zoid--you did a great job with the anemia, and you can do it here too.

Getting a second opinion might help build a bit more confidence in any decision you choose, and in the mean time, it's letting your leg heal and rest more.

::Hugs:::

ETA::Nevermind, I see you have already KILLED it by emailing some questions! Awesome job!!

[zoidberg]

I think I will proceed with the injection, now that I understand what it is for. But I will definitely get a second opinion if he recommends surgery (because I think that is just a good idea).

[panicked]

I think you and I are medical twinsies. I have Celiacs, with dermatitis herptiformis. I also have snapping hip syndrome. I can totally understand the frustration and anger you feel towards medical professionals. I think you need to become an advocate for yourself. Is there someone you can trust to go with you to the appointments who can help you to ask questions and get more info?

[zoidberg]

I really don't have anyone to bring with me, my H can't take off work like I can and I have no other family here. But now that I know that I can email him with questions I am feeling a million times better about the whole thing.

Plus I think I am just extra emo and frazzled because I haven't been working out, but he said I can go back to biking and spin (as long as I don't do up-downs)! So happy.

[taratru]

6) drink heavily

7) get a new ortho, stat.

8) accept hugs from internet strangers (kams can vouch for my awesomeness in hugs-ha!)

I'm sorry. What a load of shit to carry around.