Core Decompression Climber ready to climb again

[climbergirl]

I was diagnosed (out of the blue) with AVN of both hips on New Years Eve 2014 and immediately began extensive research on the disease and my options for treating it. Although I did find quite a lot on information on the disease itself and some information on treatment options, there is not a lot of 'personal' information out there. How long would I be out of work, what were experiences with pain, were there activities or foods that would increase my chance of healing faster...? Since I found the information so sparse when I was looking I thought I'd document my own journey here to help others who may be in a similar situation.

Let me take a step back and introduce myself. I'm a 38 year old mother of one wonderful 10 year old son. I am very active and up until a few months ago enjoyed hiking, biking, running, and rock climbing, most of these activities with my husband and son. For a few years I've been getting pain in my right knee when running so about 8 months ago (July 2014) I finally went to see the doctor. I was diagnosed with IT band syndrome and sent for twice weekly PT. Two months later no improvement so I was re-evaluated, diagnosed with bursitis, given steroid shots, and continued PT. Although the immediate area where I received the shots was less sore, no other improvement. I was sent for an MRI in December - Diagnosis was bilateral complex labral tears, minor FAI on L, and bilateral Stage II AVN. That sucked. (I also think there probably is IT band syndrome and some piriformis issues in there too, but more on that later).

So after extensive research and 3 second opinions (and a 'last fling' trip to Ecuador!) I decided on Core Decompression of both hips as quickly as possible. There were 3 main reasons I chose this approach:
1. I am still relatively young and want to put off hip replacement as long as possible
2. If there is any possibility I can avoid hip replacement I am willing to try
3. The sooner the better to avoid any further degeneration

I had my first surgery on March 3rd under epidural. All went well and other than some wooziness from the pain meds felt pretty good - I went home that night. All in all I'd say my recovery so far has gone well. I have lived this past week mainly in a comfy corner of my bed with little movement other than to the bathroom and back on crutches. Pain has been fairly constant (deep in the hip as well as at the incision site) although has moved from an overarching 'I just had surgery so everything hurts' to more focused pain. What I did not expect was the soreness in my thigh, although that has lessoned quite a bit, and some back pain, both from the epidural and lack of movement. I have managed pain with ice, rest, and OTC meds. I am also trying to nourish my body well - LOTS of water, whole foods, herbal supplements for bone growth and healing.

I am a get up and go person and I will say this recovery has been slower than I hoped. I had planned to go back to work tomorrow but I still tire VERY easily so may end up waiting until next week. Because of that I do have a bit of the post-op blues; I get frustrated that I'm in this situation, teary at feeling trapped and dependent on other people, overwhelmingly scared I'll never be able to hike or climb with my boys again. My logical brain tells me just take the time I need, treat my body well, and do what I need to do to recover. But it's really hard.

 

[Jaycey]

@climbergirl , Welcome to BoneSmart! The first thing I want to confirm is that you will indeed get back to your climbing. You just need to give your body time to heal.

It is really way too early to be thinking about returning to work. Can you postpone your return until your pain is better managed? And that energy drain is a very real part of your recovery (note the article below). Going back so early is bound to set you back.

Unfortunately what we see here on the forum is that decompression can be a more painful recovery than THR. I would suggest you speak to your primary care doc about better pain medication. OTC drugs at this stage really are not going to give you the mobility.

I'll leave you with some articles from our Library. They refer to THR but your recovery is very similar.
First are the BoneSmart mantras ....
- rest, elevate, ice and take your pain meds by the clock
- if it hurts, don't do it and don't allow anyone - especially a physiotherapist - to do it to you
- if your leg swells more or gets stiffer in the 24 hours after doing it, don't do it again
- if you won't die if it's not done, don't do it
- never stand when you can sit, never sit when you can lie down, never stay awake when you can go to sleep!
- be active as much as you need to be but not more than is necessary, meaning so much that you end up being in pain, exhausted or desperate to sit down or lay down!

Pain management and the pain chart
Healing: how long does it take?
Chart representation of THR recovery
Dislocation risk and 90 degree rule
Energy drain for THRs
Pain and swelling control: elevation is the key
Activity progression for THRs
Home physio (PT)
Post op blues is a reality - be prepared for it
Myth busting: on getting addicted to pain meds
Sleep deprivation is pretty much inevitable - but what causes it?

 

[Jamie]

Hi and welcome to the fourm. Let me second what Jaycey has told you. You will get back to the things you love but it may take a little longer than you had originally planned. Assumng everything goes well with your recovery, you will successfully put off a hip replacement for some period of time....no one can say exactly how long, of course. I applaud your extensive research and calm resolution in making this decision for yourself. It sounds like you have a good attitude going into all of this. It's always a shock when our bodies develop problems like this....we just never plan for it!!!!

You're still early in the recovery process. Take a look at the articles Jaycey posted for you and let us know if you have any questions or concerns. We're here for you.

 

[copsham]

Hello @climbergirl
As you said what a shock for you and so young! I love to read of peoples journey when it is constructive and looking at alternatives. I spent years avoiding a hip op doing all sorts of things to keep the op at bay. It is impossible to tell how successful I was- maybe I delayed the op by several years but may be the process was just slow. I had/have? osteoarthritis in one hip only. Things that helped the pain without a doubt were acupuncture and curcumin95. I also had "tui na " a form of massage therapy to keep the joint moving.

I don't have any experience of AVN myself but my neighbour took fosamax (osteoporosis preventer) for it as part of a trial. Do not know the outcome.

Things to also consider Josephine finds a chiropractioner very helpful. Also if or when the time is right there is a lot of extreme longevity of joints, some lasting 40 plus years.

There are many members of this forum who have AVN who no doubt will respond soon. I hope you find this forum as helpful as I do albeit for different reasons. Wishing you a constructive and creative future!

Karen

 

[copsham]

Hi again @climbergirl
Just noticed a post from @whatthe2 she is back fully involved in her sports post AVN. She describes her journey in detail.
Hope it helps you!

 

[climbergirl]

Thank you all for your kind words and support - SO good to hear from folks who've been there. The articles were very helpful! And knowing other folks are back to regular activities is also a big help.

At this point, a week post-op, the pain is surprisingly manageable; the difficult part for me is how tired I get so easily. I find that even taking a shower wears me out enough to warrant a nap. Holy moly, how long does THAT last?? I see the doc tomorrow for my post-op (and hopefully get my stitches out) and I'm hopeful he'll have me start on PT. I know it will wear me out even more, but I'd much rather be worn on from doing something productive and be moving in the right direction.

@copsham, yes I'm a big believer in alternative approaches as well - anything that may help! I did acupuncture prior to surgery which helped somewhat. I also do yoga and meditations/visualization which I think also helps with blood flow and calming. I've also started drinking a glass of comfrey tea a day (i know, be careful), and am loading up on garlic, ginger, turmeric, and the powerhouses - kale, blueberries, sweet potatoes, and beets. Does it help? Who knows, but it helps me feel like I'm doing something

I start back to work tomorrow (from home) for a few hours, then in the office a few hours on Thursday as a 'test'. I REALLY don't want to set my physical recovery back so if it's too much, that's it for me for awhile. We'll see. When did other folks go back? Did you think it was too early??

 

[Jaycey]

After my RTHR I was back to work (from home only) part time at week 4. At 6 weeks I was full time from home and going into the office 2 days per week. Frankly, that is an early return. Here's a link for you about Phased return to work

 

[Poppet]

Hi @climbergirl, In addition to the articles you have been provided with already, you may like to browse these.

As you so rightly indicate nutrition plays a huge part in surgical recovery, in fact it is one of the 'forgotten topics' of recovery..

The following is a link to an article which provides the current science regarding the healing beneath and around the implant and approximate timeframes for the healing phases and processes and the relevant nutritional information for each phase.

Healing Phases & Nutrition

This second link is to other nutritional articles which you may find interesting, including one relating to bone health.

Nutritional advice for pre op and recovery

This third link refers to my ongoing research..

nutrional-snippets

 

[copsham]

Hi climbergirl,
I had excessive sleepiness for about 3 weeks. I would shower then sleep, takes meds and sleep, read the headlines and sleep and so the day went on.Thinking about making a phone call made me tired! In this phase I kept trying to be normal but did not quite make it! I love my visualisations/meditations but putting one on was a cue to go to sleep it felt quite crazy at the time. At one point I was walking from the bathroom to the bedroom and fell asleep whilst walking and walked in to the wall. The excessive sleepiness did wear off by about week 3-4. I remember reading in the articles from Bonesmart about this being the body's response to the energy expended on healing.

If I had been resuming work as early as you are planning I think I would put a disclaimer on any emails saying please note this is written X days post major surgery!! My brain was not 100% in fact it was quite fuzzy at that point.

It seems that there is a lot of testing ourselves, then being realistic and pulling back if necessary. If we have overdone it our bodies certainly tell us.

I am now in week 7 and I must say I now am beginning feel excited about the future (did I really say that?) having been on quite a roller coaster to get here.

Best wishes for your week ahead!
Karen

 

[climbergirl]

@Poppet, Thanks for the articles - I especially love the first!

@copsham, I think this is the most true statement I've read so far about recovery:

It seems that there is a lot of testing ourselves, then being realistic and pulling back if necessary. If we have overdone it our bodies certainly tell us.

So that going back to work test? It failed. Not entirely, but I can now safely say you should take off at least two weeks after a core decompression - even if you have a 'desk job' (which, once you're on crutches you'll realize is really more of a run around a lot, go to meetings, and go talk to people job). I will say it was fantastic to be back in the land of the living again, but after only an hour or two I was just exhausted. Will be going back starting next week - but part time and almost exclusively from home. Think that's a good compromise .

Some other things I've learned this past week (to be put to use for my next surgery in a few weeks):
- Even if you only take 1 a day, narcotics can cause a 'hangover'. You may be completely whacked out all day even if you take only one at night.
- Have several types of 'aids'. I have two types of crutches and a walker - amazing how much better my back feels when I switch it up
- Your main support people need support people too. Make sure they get out and can be 'normal' as soon as possible
- I burn about 300 calories an hour on crutches. Since I'm not doing any other exercise, I'll take it!

 

[climbergirl]

Having a few issues and have some questions for CD folks out there -

1. Not happy with my doc - I seem to be getting a lot of conflicting advice: NO weight bearing for 4-6 weeks... 30-40 lbs is okay to start with, build up from there... you can now put 1/2 your body weight on it (1 week post-op). What's the real deal?? I tried to put a little weight on it today and had shooting pain up my leg, but maybe it's just because that leg is weak?

2. At my post-op late last week I was told I didn't need PT, that I can swim and use the stationary bike but that I would not be going to PT? Is that normal? I was hoping for someone to help guide me through this healing process but maybe that's not the norm?

3. I'm getting weird muscle spasms in my thigh and an odd pain in the top of my foot - both on the operative leg. I asked the doc if this was normal, he said no, but did not offer further explanation... Anyone experience this??

ANY feedback very helpful - THANK YOU!!

 

[copsham]

Hi @climbergirl
I have no advice BUT big empathy for the lack of communication and lack of explanation .... You must be one of these weird people who want to know what is going on and what to do about it like me JOKE. I hope some one responds to you soon. It is amazing to get better advice from Bonesmart that the consultants. I have been belittled so much, appointments cancelled, ignorance because I am not the norm and have allergies/sensitivies to internal stitches. I expect what you are suffering is not the norm either!!
Why don't you tag Josephine? She gave me sensible advice when the system was failing me.

karen x

 

[climbergirl]

Thanks for your kind words Karen - so appreciated.

You're right, I'm not the norm. By the time I was 5 I had been hospitalized 16 times for severe asthma. When I was 9 I discovered I have a genetic eye condition that has left me legally blind. When I was 14 I was diagnosed with cancer that I fought for 10 years, and after the birth of my son I went into congestive heart failure from an undiagnosed heart condition. God knows there is no reason this newest obstacle should follow a normal path. When it comes to health, I'm just not normal. I shouldn't be alive.

And because of that I am SO SO SO frustrated. There seems to be so little known and so little that is the 'right' answer for this blasted disease. Why am I still so tired from surgery and why am I crying all the time. Why does my thigh hurt and why is my epidural injection site getting more sore instead of less? In all my other health issues I've powered through, figured it out, didn't let it keep me down, fought hard, stayed positive. I seem to be failing on this one, though. No amount of time spent on Google Scholar is providing me the research I need to make the right decisions, no number of second opinions assuring me of the right path. I hope 3 months from now I can look back and be happy with how far I've come, but right now I can only see myself still sitting in my spot of the bed, researching alternatives I've already considered and taking pain meds for pains that came AFTER I was 'treated'. grrrrrr.

 

[craftdee]

Hi @climbergirl Oh dear, those post op blues... I SO feel for you

It is one of the dips on that Roller Coaster that Karen described. I thought I'd paste a quote from my own recovery thread to show you that a) you're no orphan and b) it gets better... coz I sure don't feel like this any more!

said to hubby I hope I start feeling this op was worth it soon, because at this stage I'm not feeling it; I feel more disabled, I'm sleeping worse, medicating more, aching more and feeling more beaten than I have for ages. I feel like I had some sort of deal with my pre-op hip, I didn't ask too much of it and it left me alone. Now I can't lay down without discomfort, can't roll over in either direction (one way hurts too much the other way's not allowed), can't bend over (not allowed anyway), can't sit without a whole great performance about angles and wedge cushions, make sure you don't cross those ankles too - dislocation is only a heartbeat away and it's agony and all this inconvenience starts again!, I can't walk without a crutch, can't walk any real distance anyway without feeling exhausted and having sore shoulders. At this point I HATE!!!!!!!!!! this new hip, the "answer to all my problems" why did I do it?????????????????????????

I too have had "health issues" over the years... last year was a doozy. I always manage to "triumph" over the adversity... I've made it my "thing" to do that.... the alternative is to be beaten by it, ain't gonna happen but this surgery just took SO much out of me - made me feel very vulnerable. The AVN isn't the real issue, (it causes problems for example with OA, but many people can have it and be asymptomatic for life) though my diagnosis added to that feeling of my body letting me down somehow. So when I say "I feel for you", I REALLY DO. I've had a THR so I'm not completely comparing apples with apples, but the sense of frustration I get from your post so resonated with me I just had to reply and show you that you are not alone in these feelings. Frustrated just doesn't begin to describe it.

Your doctor is right too in a way, it may not be "normal", but the one thing about this disease and surgery is that "normal" is pretty elusive! Every recovery is an individual event. Regarding PT... in the US it's very much on the agenda, in the UK and here in Australia... really NOT... and our "success rate" is every bit as good as the US so don't worry that lack of PT = lack of result

Now, the thing I wanted to say the most (after all that) is that IT GETS BETTER, MUCH and SOON. I read my recovery thread and can hardly believe that's ME talking; so down. I am NOT like that normally and not like that now, a few weeks later. I've had some soft tissue problems (from overdoing it too early - so feel free to learn my lesson ) but that feeling of desolation is nowhere to be found, thankfully. The people who got me here are NOT the medicos either... it's the good been-there-done-that folks of Bonesmart. The only Dr that really helped is my GP as she has had a THR, and she readily admits that she had no clue about half of the things that come up in recovery until she'd gone through it herself! It's the equivalent of a childless midwife... they just don't "get it" no matter how educated they are on a technical level. The other thing that has helped, the most I feel, is TIME... I tried to be proactive with my recovery, but I really do have the sneaking suspicion that I was going to be "good" at a point in time, regardless.

The best thing from your point of view is that the dreadful "Energy Drain" (which pre op I considered was a bit of a cop out for the undermotivated! changed my mind on that one ) really should ease up for you very soon. Two to three weeks sees a huge improvement

Keep coming here, venting helps... and it passes that time.

Hugs, Donna

 

[copsham]

Hi @climbergirl
Wow talk about "not normal" we are a right pair!!!

The tearfulness was terrible for me for a few weeks, now I am my normal, that is only sometimes tearful self!

I am a believer in little or no PT. I was progressing well just with very gentle hydrotherapy. Then at 6 weeks I had my first, what I thought was a gentle "on land" physio session and then I could not walk the next day and about three weeks of progress was knocked out. I m now sticking with swimming and walking only!
x

 

[climbergirl]

@copsham and @craftdee thank you so much for your words of support (and it's amazing how much an emoticon hug feels like the real thing ). As you know, it's SO helpful to be able to vent and have someone 'hear'. This whole manic depressive thing is just not working for me - need to figure that sucker out pronto!

As it turns out, there was something else going on. The pain at my epidural site got so bad last night I couldn't sleep on my back (and after hip surgery, that leaves few options!) so called the doc this morning. They brought me right in and it turns out I had developed an abscess (YUCK!). They drained it (double YUCK) and put me on antibiotics - already feeling better. This may have been the cause of the extra pain I had in my left leg as well (how much of a relief is getting answers!?!)

@copsham that's good to know about your PT. I was told once again this morning no PT (although did get clarity on the weight-bearing) so I've developed my own little routine to make sure my left leg is strong enough when I go in for the second surgery in a few weeks. It feels so much better to be able to take action, to feel like I'm doing something!

Thank you once again for your support! It's priceless!!

 

[copsham]

Wow you are really going through it. I was distressed at having to sleep on my back and there you are in agony with your abscess. You need to be floating in the air. By the way is your logo photo YOU climbing?
Karen

 

[Josephine]

I seem to be getting a lot of conflicting advice: NO weight bearing for 4-6 weeks... 30-40 lbs is okay to start with, build up from there... you can now put ½ your body weight on it (1 week post-op). What's the real deal?? I tried to put a little weight on it today and had shooting pain up my leg, but maybe it's just because that leg is weak?

No, it's because the bone is weak. The weight bearing issue is a little like try it a little and see. There is no written out programme if progress for this. They say it has to take around 6 weeks overall but just take it a little bit at a time in the meantime! If youi see what I mean!

Incidentally, which type of core depression did you have?

At my post-op late last week I was told I didn't need PT, that I can swim and use the stationary bike but that I would not be going to PT? Is that normal? I was hoping for someone to help guide me through this healing process but maybe that's not the norm?

No, you don't need PT for this op. In fact no hip op needs PT. Hips actually don't need much exercise to get better. They do a pretty good job of it all on their own if given half a chance. Trouble is, people don't give them a chance and end up with all sorts of aches and pains and sore spots. All they need is the best therapy which is walking and even then not to excess.

I'm getting weird muscle spasms in my thigh and an odd pain in the top of my foot - both on the operative leg. I asked the doc if this was normal, he said no, but did not offer further explanation... Anyone experience this??

Well, I would make an educated guess that you are probably not taking your pain meds enough.

I'm going to ask you some questions and it would be very helpful if you would answer each one individually - numbered as I have done - in as much detail as you can then I'll come back as see where you are ....

1. what are your pain levels right now? (remember the 1-10 scale: 1 = no pain and 10 = the worst you can imagine. And don't compare this with the bone-on-bone pain you had before surgery!

) Also don't forget to include other forms of pain such as soreness, burning, stabbing, throbbing, aching, swelling and stiffness

2. what pain medications have you been prescribed, how much are you taking (in mg please) and how often?

3. what is your activity level? What do you do in the way of housework, cooking, cleaning, shopping, etc.

 

[climbergirl]

@copsham Yes, my profile picture is me last spring . My doc says I should be able to participate in my normal activities at 6 months - think this counts ;)?

@Josephine Thank you for your responses - SO helpful to have guidance. As far as what type, I think I had 'regular'...? No grafts, noting put in the hole. Below are my answers to your questions; any feedback you have on effective healing is greatly appreciated!

1.
HIP: As long as I take my meds on time and don't overdo it I'd give the pain in my hip (or groin area really) about a 2-3. If I do too much (feeling strong so decided to push a bit) it can go up to a 4, but is pretty manageable. The pain is mainly a dull ache with a little stab every now and then.
INCISION: 1 if I don't touch it, tenderness to a 3 when I massage in the Vit. E oil.
THIGH/FOOT: Solid 2, constant soreness

2. I'm taking 1 Extra Strength Tylenol every 4 hours and 2 at bedtime. I was prescribed Hydrocodone (325mg) and Celecoxib (200mg) but haven't taken those in about a week because I don't like the way they make me feel - woozy, disoriented, forgetful.

I am using heat/ice as well. Heat directly to the area 20 minutes twice a day to increase and encourage vascular flow. Ice after I've been out and on the crutches for awhile.

3. Not doing much housework other than folding laundry here and there (thank you hubby) but I am working a bit. I've gone in twice for 5-6 hours each and have been working from home 4-6 hours on the other days. I do notice I am pretty worn out after a day in the office (need a day to recover), but my mental outlook is SO much better after a day in the office. I am also doing some VERY gentle yoga and stretching, mainly for my back and shoulders to counteract the crutches, draining this nasty abscess, and sitting in bed so much. Other than that, I've been out to dinner a few times and usually go up and down the stairs on my butt/hands a couple times a day.

I'd love to hear any suggestions - thanks!

 

[Josephine]

As far as what type, I think I had 'regular'...? No grafts, nothing put in the hole

Okay, I understand. Just a drilling then.

They brought me right in and it turns out I had developed an abscess (YUCK!). They drained it (double YUCK) and put me on antibiotics - already feeling better. This may have been the cause of the extra pain I had in my left leg as well (how much of a relief is getting answers!?!)

That's a major set-back for you but more on that later ...

HIP: As long as I take my meds on time and don't overdo it I'd give the pain in my hip (or groin area really) about a 2-3.
If I do too much (feeling strong so decided to push a bit) it can go up to a 4, but is pretty manageable.
The pain is mainly a dull ache with a little stab every now and then.
INCISION: 1 if I don't touch it, tenderness to a 3 when I massage in the Vit. E oil.
THIGH/FOOT: Solid 2, constant soreness

I strongly recommend you don't massage your wound. You're only 2 weeks out so the wound is too fresh. Besides which, it's really not necessary. Massaging my wound - what should I use?

2. I'm taking 1 Extra Strength Tylenol every 4 hours and 2 at bedtime. I was prescribed Hydrocodone (325mg) and Celecoxib (200mg) but haven't taken those in about a week because I don't like the way they make me feel - woozy, disoriented, forgetful.

You're nto taking an effective dose. One tablet is only 500mgs but a working dose of Tylenol is 1,000mgs. If you don't like hydroocodone, then ask your surgeon or your GP for something else as you need more than Tylenol. I suggest something like Tramadol or codeine.

I am using heat/ice as well. Heat directly to the area 20 minutes twice a day to increase and encourage vascular flow. Ice after I've been out and on the crutches for awhile.

Actually, if you are having pain then heat might not be a good idea as drawing blood to the area only increases pain and swelling. Swelling is a form of pain too as is soreness, burning, stabbing, throbbing, aching and stiffness.

3. Not doing much housework other than folding laundry here and there (thank you hubby) but I am working a bit. I've gone in twice for 5-6 hours each and have been working from home 4-6 hours on the other days. I do notice I am pretty worn out after a day in the office (need a day to recover), but my mental outlook is SO much better after a day in the office. I am also doing some VERY gentle yoga and stretching, mainly for my back and shoulders to counteract the crutches and sitting in bed so much. Other than that, I've been out to dinner a few times and usually go up and down the stairs on my butt/hands a couple times a day.

I strongly recommend you stop going to work. Did you read the recovery articles Jaycey left you? In there are two very pertinent topics which are activity progression and the energy drain. Don't be put off by the fact that they are written for hip replacements as they are just as applicable to CD.

So is going to work at two weeks a big no-no! You should stay off work for at least 10 more weeks as the healing, the need for pain management and the fatigue will be strongly in evidence until then. Even going back for two days will hinder your recovery.

'Yes but,' I hear you saying, 'I'm athletic, I'm used to being busy and I'll get cabin fever staying off that long'. But even though you might not realise it, you have had major surgery designed to regenerate the bone in your hip. By being too active too soon you risk putting that in jeopardy. If you want to give it the best chance of success, which is slim at th4 best of times, then stay off it! By which I don't mean total non-weight bearing, just partial weight bearing and certainly resting to allow yourself to recuperate as well.

In addition, you have an infection which is going to increase the energy drain as well.

BTW, are you making an official complaint about that? Because I think you should. In all my years in surgery, I never ever knew of an epidural site becoming infected to the point of becoming an abscess. I think it's outrageous as someone on that team doing the procedure must have transgressed the sterile technique.