Funks gone!

There are very few things that can snap me out of the "funk" I've been in feeling as bad as I do, but my friend K did the trick! We've booked a trip to London (my 2nd favourite city in the world!*) for New Year's and my lovely friend P has opened up his home to us. I have the best friends! So it's a birthday and very early Hanukkah pressie for myself! YAY!!! It's also great motivation to plough through all the PT I will be doing.

*NY is the first - of course!!!

HENRY!!!
(yes for those of you who are not aware, I have a deep
fascination with Henry VIII - call it a morbid curiosity into his twisted mind.)

Various snaps of London

The Tower of London

And its' bridge, not to be confused with London bridge...

M.I.A.

I've been MIA because this weather is killing me. Regardless of the hip, the rest of me feels like it's been run over by a very large 18-wheeler.
So the update is as follows:
I still have not heard back from Dr. Kelly's office about a Dr to see regarding what the PA had been talking about. I've sent multiple messages, and as I'm sure this does not rate high on their list, it's essential to me. So off I've been doing loads of research. My parents Dr recommended a rheumatologist at NYU, and I was going to see him (even though he doesn't take any insurance and it's $550 for the first visit - what cheek!). However, I came across some other names on some hyper-mobility boards I was reading and researched them. The one that seemed to stick out for me was Jessica Davis. She is a genetics specialist and when I rang the office happily found out she takes insurance! I also spoke to her assistant and told her (briefly) my various issues, and she said that is the kind of patient Dr. Davis sees. I try to not get too excited about these little things, but it was a relief to hear that I was barking up the right tree, or at least heading into the right forest. So my appt is for 6th Sept. I cancelled the appt w/ the $$$ rheumatologist for now. I figure that if this Dr says I should see one I can do that, but if there is no need I saved a nice chunk of change, and time too.
Dr. Davis' office asked me to bring any sort of records I could obtain. I believe I had an EKG and chest films a year or so ago so contacted my GP for those and also had to ring the horrid ex-rheumatologist's office to get the last blood test results she did for me. I can't tell you how much I was dreading that she's answer the phone. Thankfully she didn't and she seems to have a new assistant who seemed very nice and hopefully will send over those results quickly. Fingers crossed.
Now it's just for me to get through this horrid weather. When will it stop???
On a happier note, my friend and I are planning to go to London for New Years. I'm not sure how great an idea that is with my hip and what situation I will be in. I figure I deserve a reward for all that I am going through, so bugger it, why not!

Gimpy's adventure

This past Saturday I had made plans to go to the football match at the Meadowlands with a friend. Just to clarify, I am talking football, proper football - the type you play with your feet, not American "football". Yes, I could call it soccer since that is what they do in America but regardless of all my friends that pick on me, I will still call it football, because that is what it is. I'm a bit stubborn, but that is the least of my worries.

My friend had an extra ticket for the Red Bulls vs. Galaxy match. I've never been to a live, professional match before so I was excited. All that excitement was tempered with the logistics of getting myself there. Once I got into the match I would be seated, but there was to be a tailgate first - that was a whole new experience for me too. My friend assured me there wouldn't be too much walking, but at the tailgate there is really no place to sit. That concerned me more than anything. 3 hours at least of standing made me start to hurt even before it was Saturday.

Friday after work I stopped off at BB&B to see if they had a cheapish folding chair. They didn't. I did find one by the exit, but it was too heavy to carry, so I was still stressing that night. Thankfully Saturday morning I found a folding chair that came in a bag and it was not very heavy. Sold! I felt much better after getting the chair, knowing I could sit as long as I needed.

I then dropped the chair off at my flat and went to go pick up a sandwich. I live in the city, and went to a place one block away figuring it was close, so I wouldn't be stressing my leg out. Not so much! By the time I arrived at the store I was limping. This did not give me faith for the rest of the day at all. I had already put some lidoderm patches on the hip and then iced it when I returned home. I iced and iced to no avail. I was meeting my friend at the subway station near me. It was extremely nice of her to come up there as she lives further downtown, and that was the way we were heading. I find it very difficult to ask for help and feel overwhelmed when it is given. I must say I am very fortunate with my friends that go out of there way for me.

We met up at the station and then went the bar where they were chartering a couple of buses and headed out to the stadium. I won't even enter into how daft our driver was, other than - how hard is it to locate the Lincoln tunnel? Seriously! Signs are EVERYWHERE!!! But I digress.

I was trying to keep a low profile on the bus regarding the hip but once we got off and I was limping it was hard to keep it a secret. There were very nice people whom I had just met that helped me, my chair and food get to the tailgate, which was thankfully not too far from where the bus parked. (Who knew lot 14 was next to lot 18 at the Meadowlands???)

Invariably when one is sitting and everyone else is standing it becomes awkward. First because you feel like you're not hanging out with everyone - you can't go stick a chair in the middle of a group of standing people, and secondly because it becomes an issue to others why you are sitting. Think of it as "inquisitive minds want to know". No matter how long I try to hold off, it always seems to come out that yes, I've a bad hip, and once that is mentioned, all the other questions seem to appear (did you injure it, no, how did it happen then, what type of surgery, etc). I try to take it in stride as it will only get worse once I've had the surgery and get the crutches and wear the brace on. I've been through this before w/ my hand surgeries. You'd truly be amazed at the idiotic things people say when you have a cast on your arm. I suppose they think they're being clever, but trust me, they're not.

Many of the guys at the tailgate were very sweet and helped me carry my items to the stadium. The stadium workers and their rules were another nightmare. I truly don't know where they come up with some of them but they seem ludicrous. They wouldn't let me carry in my chair, that was folded and in a canvas bag, but they let people bring in large drums and various percussion instruments. They claimed the chair could be used as a weapon - how is that different from the large brass instruments? They wouldn't let you bring in water with a cap on it either. (I took the cap off and put it in my pocket, the guard saw me, but I gave him a look like, go on, just try it - and he let me go. But that was because he and his buddy had given us a hard time with the chair, so I think he realised I was at the end of my tether.) My fabulous friend went all the way over to another gate and checked the chair for me. If we had to leave it out there it wouldn't have been the worst thing, but I greatly appreciate her doing that. Not only did she take the chair, she did not let me go with her. She had one of her friends take me inside, and then after the game she went to pick up the chair, again sans me, and had another friend make sure I made it to the bus. I am usually the super-organised-never-gets-lost girl, but when you feel like crap and are a gimp, it's amazing how much it lowers your self-esteem, confidence and the sort.

In closing I am glad I was able to go to the game, it was a lot of fun, and I hope to go to more when I'm no longer a gimp (hopefully that will not be too far off, please G-d!) But I also want to thank my friend and all of her friends for helping me make it through the day's events. I could not have done it alone.

Answers

The doctors PA rang me and we were on the phone for half an hour! I truly appreciate all of her time and patience on the phone. I did have quite a list and did get some answers. I tried to write down everything but it was hard so here are the q's and what her answers were (I've made them short and to the point though she was quite specific)...
In general she said the surgery should help with the pain, and also asked if I had ever been tested for a collagen disorder (not that I am aware). She is going to check w/ the dr to see if he thought I should and to recommend a rheumatologist that could do the testing. My main issue she said is the laxity I have.

Will these procedures help to “tighten” the tissues and muscles supporting the joint so that it will not be so lax? Will they help my “hyper mobility” in this joint? to an extent it will help but you cannot cure laxity.

What could have caused the labral tear? lax patients are more prone over time to develop tears. she said b/c of my laxity i can move my joints into positions that don't seem over extended for me, but over time it could wear on them.

Is FAI degenerative? yes

Is the underlying femoral neck misshapen and also causing the impingement or a result of the impingement? my FAI is believed to be mild, but I still have impingement. they can shave down the bones if they need to and get rid of any bony abnormality

For the PSOAS release, what is exactly done? Is it the muscle or tendon that is released? Would ART help rather than surgery for it? they release (cut) the tendon portion and only 10% of muscle, the part that is snapping over the acetabulum. Patients tend to do well and not snap after, but b/c of my laxity it is tricky b/c it is a stabilizer for my joint. the dr will decide in surgery, but if it is done i can expect to be weaker than patients that don't have laxity, and they will work on that in rehab. The ART is not recommended for me, again b/c of the laxity, and it would only be a temporary fix, so surgery in my situation is the way to go.

Is my IT band tight? Do you anticipate having to do a release for me? Would you lengthen the tendon or remove a section? my IT band is probably tight if it snaps, which it does. they will check this in surgery as well and if necessary will release it with a knife cut through the IT band, lengthening it.

Re: the trochanteric bursitis debridement, are you definitely removing the bursa or will it depend on what it looks like when you go in? if inflamed they will remove it, and there is a pretty good chance it will be removed. she said i should be ok w/o it because now it is only causing pain from inflammation as it's located between the bone and IT band.

Can you tell if I have any large chondral lesions? they can't really tell this on the MRI so will observe when in there. This is the articular cartilage (the type you have in your knee that is affected when you have chondromalacia), which is different from the labrum which is more like a meniscus cartilage.

Could the PT have made the FAI worse? yes it could hurt the tear, not the FAI, if the pt has been really working you hard and moving leg in extreme positions. i haven't been doing anything extreme so hopefully it didn't make it worse. basically so long as you listen to the pain and not do what causes you pain - though at this point walking and sitting cause pain!

What is the success rate you have had with these procedures? hard to say in a number value, but she feels most people who had a labral tear were glad they had the surgery, but it also depends on what caused the tear. The five categories are laxity, degenerative (arthritis), trauma, psoas and fai. She feels that I am in the laxity category which is one of the worst to be in, and that I will most likely not have 100% improvement, maybe 80%. At this point I'll take the 80! Also, b/c of my situation I really have no choice but to do surgery b/c w/ laxity the options are limited. I am not the best candidate, but at the same time forced into it b/c of the lack of other options. And this surprises me why?

How long for a full recovery, on average? four to six months, but up to 12 months.

After recovery, are there any restrictions? Can I ever ride again? granted the thought of riding at the moment is extremely unappealing, i would eventually like to be able to do this, and happily, she said that they do have patients that have gone back to riding, so after about 4 mos it should be fine. I'll wait longer but glad that i will be allowed to. on the other had, she said riding probably didn't help the situation, and though i haven't done it very much in the last few years, i did it a lot when i was younger, so i could have affected what is happening now.

What are the chances the surgery will need to be repeated? Dr. Kelly does not like to do surgery again, unless, in some cases, it's a revision b/c the tear did not stay repaired after they repaired it, as opposed to debridement it.

Does this surgery increase the chance of needing a hip replacement in the future? there's no data out there b/c this procedure is relatively new. A hip replacement would only help if there was an arthritic condition.

Pain pain go away, don't come again - EVER!

I'm in a slightly whinging, aching, miserable mood, mostly due to the weather acting up my fibro and also the fact that my left hip has been starting to hurt more and more. I think this is b/c the right one is bad so I've been limping more, but I still don't like it! I apologise in advance for a negative update, but I've got to vent for a bit. This week has been one annoying thing after another.

On Monday I had a doctor's appointment for a check-up. To begin with I feel like a beached whale! I've never been so overweight in my life, and it's driving me batty that I can't do any cardio. My doctor kept asking me how long it will be till I can exercise. Not very subtle, but it touched a very sensitive nerve. I never thought I'd miss exercise so much in my life!

Speaking of...I had PT yesterday. I haven't gone for two weeks because of insurance reasons. I have been doing my PT at home in the meantime and trying to do some exercises in the pool as much as I can tolerate. The last few days I've been in a lot of pain so my PT wanted to do some stim with a weight. Fine, not a problem, except...his trainee came over and set it up and then put a 5 pound weight on my ankle, unbeknownst to me. The most weight I've done on my ankles has been 3lbs and though that does not sound like a lot to most people, for me it has been a huge achievement. I tried to move my leg up and it was not moving. I asked her how much she put on and she said 5!!! I'd be quite happy if I could do 5 lbs but I am the one that suffers after and I don't mean just being "sore" from muscles. I mean, can't move the leg or put pressure on it and feel like some one's stabbing a knife in me - type of pain. Anyway she kept saying oh sure you can do it, like that was somehow going to miraculously make my leg strong enough. If sheer will power could get me better I'd be there already. The point of this rant is she just made me feel how slow it's all been for me and I've not even had surgery yet, and with all the concerns and fear and worries in my head, I was about to cry from this.

To add insult to injury, last night I came home to a message from the Dr's PA. She said that she thought ringing would be better b/c she's never seen so many questions before. I'm quite happy to speak to her directly, but it seemed as it was a bit of a jab. Seriously, this is my body, I have a right to know what they're going to do! I know people who are not very proactive and just go along without asking questions, so perhaps the dr's are used to that. Anyway, it was too late to ring back so I left a message for her this morning and hopefully will hear back from her today.

Ok, glad I got that all off my chest.