Tag: hip necrosis

Hip Replacement Week – 6

On By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement8 Comments
My New HIp. 14th April 2015 by Dr. Springer, OrthoCarolina
My New HIp. 14th April 2015 by Dr. Springer, OrthoCarolina

I just looked by at my last post about my hip replacement, that was a long time ago!

Let’s see what has happened?  I should tell you the good and the bad…I think this is going to be a short post.

The Bad:   I had vertigo attacks every day for 37 days straight.  I think I had good reason to be concerned.  My personal belief is that the Coumadin had something to do with it.  I was on the medication for 28 days, give it a week more to get out of my system….vertigo slowed down drastically.  I’ve had some vertigo since then, but nothing like I had before.  Thank goodness.

About a week or so after surgery I had vertigo that was very different than I have ever had before.  I felt like I was being thrown around the room.  Literally like my body was being tossed all around.  It was horrific.  I threw up and threw up.  My brain felt like it was coming apart in my skull.  I thought I might be dying.  I was so pale Stuart called an ambulance and I was taken to the emergency room.  My darling husband and sister spent about 7 hours at the hospital with me.  The tossing around stopped when I was in the ambulance, but I still felt like I was moving.  (I got vomit on the Ambulance attendant, I was so embarrassed.  She was so sweet.)  It is very difficult being in the emergency room when you have vertigo.  They can’t really do anything.  They gave me the same medication I have at home, I was just much more uncomfortable.

Funny story, I had to pee when I was in the ER, and of course I had to use a bed pan (they gave me a huge bed pan), can you imagine how much pain that caused when I just had my hip replaced 6 days before?  I must say I’m glad they gave me such a big bed pan, but I still over flowed it.  It was a mess.  The nurses had a big laugh though, they swore I could not have held that much pee and not burst my bladder!  However, it was not a comfortable thing to change my sheets and clean me up!

I’m still having a lot of pain because of my back.  The sciatic pain is hard to deal with sometimes.  My doctor told me to wait a while before I went to the see the back doctor, he thinks it will get better when all the swelling goes down and that could take a few months.  I can’t see the swelling now, except in my foot, but I guess it’s probably still there inside.  I’m really hoping the aqua therapy will help with this again.

The only other bad thing was that my physical therapy was a little behind because of the vertigo.  Unfortunately, I missed quite a few sessions of the home PT.  However, I work hard on my own, my physical therapist was always surprised that I was as far along as I was considering hadn’t been able to keep on schedule.

Another view of my New Hip - by Dr. Springer - OrthoCarolina
Another view of my New Hip – by Dr. Springer – OrthoCarolina

I saw my doctor, Bryan Springer, MD of OrthoCarolina, exactly one month after my surgery.  The first thing he said was when he did the surgery  my hip looked pretty bad in there, then he showed me my x-ray of my new hip, and said I was doing great!  I go back to see him in 3 months!  Woo Hoo!  I did request to go to further physical therapy since I didn’t get to finish my PT at home and he was all for it.  Unfortunately, I haven’t been able to start it yet.  I’ll be doing Aquatic Therapy and the place I went before have drastically cut their hours so I’ll be going to a different place.  I’m a little nervous because the other place was very quiet and I could easily hear my therapist.  I don’t know how the new place will be, I have a LOT of trouble with my hearing so if it is the slightest bit noisy in there I may have a lot of difficulty.

Wendy walking at 4 weeks.
Wendy walking at 4 weeks after hip replacement.

By the 4th week I was able to walk around the house with just a cane.  Now I can walk around just about everywhere with just a cane, if I didn’t need a walker for my balance issues.  I don’t put pressure on my walker though, it is there just to help me with balance so I’m putting my weight on my hip.  I’m walking a lot.  I can easily go up and down stairs, as long as I’m not too dizzy.  🙂  I can walk around the house and yard without any assistance at all…unless, of course, I need it for my balance. How cool is that??

Wendy going up and down the steps for the 5th time, at 4 weeks after hip replacement surgery.
Wendy going up and down the steps for the 5th time, at 4 weeks after hip replacement surgery.

I think I’m doing pretty good at PT by myself, but I want some guidance from a therapist about when I can stop following the “rules” I have to follow, and how hard I can push myself in certain exercises.  I know from experience I can get more range of motion exercising in the pool so I’m really looking forward to that.

For anyone out there who may be reading this who has Avascular Necrosis (AVN), I want you to know that the pain from AVN stopped the moment I had the surgery.  The pain from recovering from surgery has not been anything close to the pain of AVN.  I sincerely wish all of my illnesses could be taken care of so easily.  I do realize that this could show up in other joints, I will deal with that if it happens, until then I’m not going to worry about it.  If you are reading this and you have AVN in multiple joints I have the utmost compassion for you and hope you can find help.

*You may have notices my shirt is way too big.  I plateaued with my weight loss when the pain from the AVN started and I couldn’t move around much.  I didn’t want to get clothes that weren’t going to fit when I started to lose weight again. 🙂  It has started again…yay!  Very slowly though.  I did get the pants from Good Will so they fit pretty good.

**yes this is late, it has been more than 6 weeks since my surgery but I had a bit of trouble with my computer.  I’ll catch up a bit more soon!

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4 days…….What if?

On By WendyIn Avascular Necrosis, Chronic Illness, Meniere's Disease9 Comments

Surgery is in 4 days.

I’ve been very nervous about a few things, mostly my vertigo and how it will affect my recovery.  I don’t like not having a plan.  When I don’t have a plan, I get scared.  I don’t like to admit fear.  I’m not nervous about the surgery itself.  I’m not nervous about normal hip replacement recovery.  I’m nervous about what I’ll do if I have a vertigo attack right after surgery.  What will I do if I can’t roll over on my left side if I have positional vertigo and the only way it is relieved is by lying on my left side?……I’m afraid of falling…….I’m afraid of how I’ll bathe …..

Then I really sat down and faced my fears….What if?

drawing by me....haha
drawing by me….haha

Really, what if these things happened, what is the worst that would happen?

About having positional vertigo….I can’t lie on my left side….ok, maybe it will be relieved by just turning my head to the left while lying on my back, or tilting it to the left while sitting up, or maybe twisting my upper body will do it?  If not, well golly, when I have vertigo from a Meniere’s attack I can’t get relief, and I live through it, I’ll live through it.  I won’t like it, but I’ll survive.  There is a maneuver that can be done that will stop the vertigo when I have BPPV, it does involve turning me partially on my left side for a bit, but I think it can be adapted.  I’ll just have to deal with it.  That is the biggest thing isn’t it.  I will deal with it.

About having vertigo while walking…or having a drop attack….Well I sure can’t control that!  If it happens, hopefully I can fall well.  Oh, I just giggled, I couldn’t help it.  I really do try my best to fall well on a day to day basis, and I do a pretty good job of it, I’ve only broken one bone!!  No concussions!  (Honestly you have no idea what a feat that is!!)  I don’t know how to fall well right after a hip replacement.  However, I am going to make sure I know how before I leave the hospital.  I’ll have the physical therapist show me the best way to move my leg if I fall.  Maybe if I fall I can do that, if not….well hopefully my hip won’t come out of joint.  If it does, we’ll deal with it.  It isn’t ideal, but something I just can’t control, no matter how much of a plan I have.  I can’t have someone with me 24 hours a day for over a month…or three….to walk with me, holding on to me, so that if I suddenly have vertigo of a drop attack they can catch me and help me.  I’d still end up on the floor.  OH…that’s another thing I’ll have to make sure I know how to do…how do I get up off the floor???  Guess that comes along with how to fall huh?  I wonder how many people ask the PT….so, what is the best way to fall?   hahaha    “Well first, hold on to your walker for dear life!”  *snicker*

I have to admit, I’m a little afraid about how to get in and out of the tub and taking a shower.  Our bathroom is not ideal.  It is not level.  The tub is far from being level.  I’ve never been able to stand in it to take a shower.  My balance is simply not that good.  I have only taken baths since we’ve been here.  The only times I’ve taken a shower has been when I’ve gone to the pool….maybe I could just go to the pool a couple of days a week to shower.  haha….yeah, that would work…considering I’m not getting aqua therapy any more, I’m sure they would let me just come in and use the pool plus it’s a about a 20 minute ride from my house….not the best idea, but it’s just a nice shower!!!!   I’m curious if the shower seat is going to sit level.  When you have a hip replacement you can’t bend your leg beyond 90 degrees, and you can’t put all your weight on that leg. so stepping in the tub is a no-no.  I have to sit down and have a straight leg out and slide in the tub.  They make a special seat for this, but our toilet is in the say.  I have not figured out how to make this work yet, but I’m sure the physical therapist who comes over the day after I get home will be able to do it.  I’m sure they have seen everything.   Hey, I know, I’ll just sit on the seat with my legs out of the tub.  Stuart can help wash the part that’s in the tub, and then he can wash my legs out side the tub.  Yep that will work.  hahaha.  Hey, worst case scenario.  We will work it out.

So…..What if?

What if?….. isn’t so scary now is it??

When it Rains…..

On By WendyIn Avascular Necrosis, Chronic Illness12 Comments

I’ve had so much going on, not just getting ready for the surgery but other things happening too.  As they say, “When it rains”….learn to dance.  (ok, I’m paraphrasing)

quote by Vivian Green. image from - www.background-kid.com
quote by Vivian Green.
image source – http://www.background-kid.com

As I mentioned in my last post, a few weeks ago I started having positional vertigo.  If I moved my head in certain positions I had violent vertigo….left for a very limited life.  I’ve had something like this before but it was associated with my migraines.  No migraines with it this time.  After a few days I tried to get in to the doctor here, but no appointments for a few days (13 days after it started), so after 12 days, it finally stopped, the day before my appointment.  I did see the doctor and I was diagnosed have Benign Paroxysmal Positional Vertigo (BPPV).  He said this will most likely pop up now and then forever.  It is caused by crystals in your ear coming loose and going where they aren’t supposed to, the vertigo stops when they go back.  (I’m just touching on the highlights of what he told me here.)  There is a maneuver, called the Epley maneuver, that the doctor can do to get the crystals to go back, sometimes the crystals go back on their own…like mine did.  BPPV can cause one to have feelings of vertigo, dizziness, nausea, lightheaded, and unsteadiness.  It will most often dislodge again, over and over.  I’m not supposed to look up, or bend over very much, and be careful when I’m lying in bed how fast I turn over…..

Some sites do say that this can happen only once.  I know someone who had this happen once and never had it happen again.  Maybe I’ll be one of those.  (one can hope.)  I have having very strong feelings of lightheadedness, and unsteadiness.  When I turn my head too fast I am wayyyy off balance!  Johns Hopkins has a very good write up about BPPV, what it is, how it is treated, and the prognosis.  I won’t try to summarize it here when you can just read it there, it’s a pretty short article.

Yes….I have a 3rd thing that causes vertigo.  I’m such a dizzy broad!

Last week I had a real scare, it happened so fast I was just in shock the whole time.  I suddenly had pain, swelling, and a big knot (sorry it was just too big for me to call it a lump) in my breast.  I wasn’t concerned at first because I know most often breast cancer doesn’t cause pain unless it is very advanced and symptoms don’t come up so fast….I mean within hours.  But there is a breast cancer that can do this, it’s called Inflammatory Breast Cancer.  That stuff is scary!!  My doctor got me in for an emergency mammogram and ultrasound, and an evaluation from a Breast Specialist, within days.  They took a lot of pictures an it hurt like the dickens because my breast was is sore, even the ultrasound was very painful.  But I’m happy to say, I’m fine.  Even though I’m post menopausal, for some reason my hormones decided to make my milk ducts go crazy.  Now everything is going down…slowly, and the pain is going away.  Thank goodness.  But it was very scary there for a while.  I didn’t have all the symptoms, but I could have been in the very early stages, and they normally catch it at Stage III or IV.  It is hard to diagnose and is very aggressive, the normal life span is 5 years!  Yes, I’m preaching a little bit about Inflammatory Breast Cancer, I feel more people should know about it.  Here are a few links that talk about it, take the time and look over one of them.  Inflammatory Breast Cancer Foundation, National Breast Cancer Institute, and the American Cancer Society are all good site to learn more about Inflammatory Breast Cancer, they are all written in a different manner, so check them out and read the one that speaks to you.
I was beside myself for those few days, only my meditation got me through, but I still had a vertigo attack the day before my mammogram.  Even now my head is spinning (not literally this time) that I had no idea about this kind of breast cancer, and how fast things like this can happen.  I really thought that all of my chronic illnesses had made me realize how precious life is, and that I should never take anything for granted, but when I thought about possibly having this, I thought….. I’m going to stop putting off things!  I decided right then, I’m going to always live as if I only have 5 years to live.   Stop putting everything off because I don’t think I deserve it because I don’t contribute, because I’m sick all the time.  If there is something I really want to I’m going to try and do it if it’s at all, yep, I’m going for it!  I don’t want to regret that I didn’t do______________.
I really never thought I would feel that way.  I realized recently how many things I don’t do because I’m afraid of how I will feel the next day.  Because I don’t have enough “spoons”.  You know what?  I’m going to borrow those spoons from tomorrow, and of tomorrow comes and I can’t get out of bed, so be it.  There are a lot of times I can’t get out of bed even though I did do what I wanted.
I thought I lived my life to the fullest and didn’t worry if my life came to an end tomorrow, but when this scare came up, I thought…”I won’t be able to do ____________, or _____________….why didn’t I do __________….Stuart and I never got to ___________.”    That has to change.   Sure finances stop a lot, but we can’t save for a tomorrow that may never come.   Some things we need to do now, instead of saving for the bigger things later.  We need more joy in our lives today.  We need to dance in the rain more often.
On a different note…..
We went to the class about for people having knee or hip replacements at the hospital this week, right before my Pre-Op appointment (yes, I’m healthy enough go through surgery).  Everyone in my class was having a hip replacement.  The person teaching the class started by saying that most everyone there was probably there because they had arthritis in their hip I shook my head, no.  She looked at me, sitting in a wheelchair and said, “Do you have Avascular Necrosis?”  I shook my head, yes.  She said, “I’m so sorry, that is so painful.”  Every eye in the room turned to me.   I have to say, I was wondering why everyone there was able to walk in with no cane or anything.  Only one person had a slight limp.  I had to remember that I can’t judge their situation, I have no idea what is going on with them.  I was just surprised.  When they told me about this class I thought, “Really, they expect people who are having a hip replacement to sit through an hour long class?”  It seemed to be no problem for most people.
I kept wondering why they didn’t give out the hip motility items, before surgery, I know I need all of the help I can get now, and assumed everyone did.  I know now, not everyone needs so much help before surgery.   (The hip motillity items I’m refering to are the devices we get after surgery.  A walker, cane, 3-in-1 toilet, shower seat…..ect)
I do have a walker, 2 actually, one that is very sturdy and will help me when I’m starting to walk again after surgery (and helps me a lot now); another that helps me more with my balance issues, it has a nice seat and everything.  We put in a bar in the bathroom.  It has helped me a lot so far, and will continue to help me even after the surgery with my balance issues.  I’m really looking forward to getting everything else.  Our insurance covers motility devices, Stuart is going to call on Monday to see if they will cover some of these things if we buy them instead of getting them from the hospital.  The person teaching the class sounded as if they will, and it will cost less.  Also, some things they will give me at the hospital isn’t going to work as well as some things I could get on my own.  Crossing fingers here….or we may just be getting some things on our own, without insurance help.
My surgery will last at most an hour….probably less.  Then I go to recovery….they have a fancy name for it, I don’t remember it. I will have a nurse assigned just to me. I thought that was pretty amazing.  After a few hours there, I will go up to my room.  I should walk a bit that day.  It really depends on how the anesthesia affects me.  I won’t be having traditional anesthesia, I will be having a spinal block, much like an epidural a woman has when she has a baby.  I will also have an anesthesia much like what you get when you have a colonoscopy, so I won’t under general anesthesia.  Therefore, there are a lot less risks.
They will spend a lot of time with me in the hospital to make sure I know how to take care of myself when I get home.  Stuart will also be there to make sure he knows things too.  He has to be with me at home all the time the first few days.  I will have a Physical and/or Occupational Therapist come to my home 2-3 days a week.  So I can’t be slack with my therapy!  haha   No worries with that, I really want to get to moving as quickly as I can!
Surgery is 9 days away.  In the past couple of weeks I’ve had vertigo so much!!!  I hope I’m getting it out of my system.  I still haven’t figured out how I’m going to have an attack and not forget all about the rules when it is going on.  But I will make sure I know how to do these things before I leave the hospital.  I have special needs and I will make sure they are addressed.  That’s what it means to be are an advocate for yourself.
Don’t want to count my chickens before they hatch and all of that, but…..
Soon I should be able to dance in the rain with much less pain!

Surgery Date, and Vertigo

On By WendyIn Avascular Necrosis, Chronic Illness, Hip Replacement, Meniere's Disease20 Comments

I will be having my hip replacement on April 14th.

I admit I’ve had my surgery date since right after my last post, but I didn’t want to make a post that just said my surgery date, so I’ve been procrastinating.  I’ve also been busy getting ready.  There’s really a lot to do.  Had to get blood test to make sure I’m not anemic.  If I had been I would have needed to start a drug to build that up a month before surgery.  Since I’m not, I still need to start iron supplements 2 weeks before to reduce the chances of needing a transfusion.  I’ll soon be having the post-surgical mobility people come out to help set up our home so I’ll be all set up after surgery.  For now there are certain things we know we need to do and are trying to get those things done.  (like lift a chair for me, and the bed…)  There’s just all kinds of things I have to do……

Aqua Therapy www.physiotec.ca
Aqua Therapy
www.physiotec.ca

Aqua Physical Therapy has been going well.  It is magical.  I get in the water and suddenly I can walk with no pain.  I go from not being able to put weight on my leg without excruciating pain, to no pain!  Amazing.  Some of the exercises to hurt, can’t avoid that, it’s so different than normally being in physical therapy when you feel better and better as you go along.  My pain is getting worse.  We understand why, of course, but it’s difficult.  However, I am getting stronger.  I can do more repetitions on some exercises, can walk further, I just can’t certain exercises any more, and we have to change other exercises . She has mentioned how amazed she is at how much better my balance and vertigo have been.  I noticed it too.  When I first started going to the pool I was a woobly mess; the last session, on Thursday, I walked the length of the pool without having to have her hold on to me.  That’s huge really.

On Sunday I woke up with vertigo.  Just a moment and it was gone.  I started to move and it was back.  Ughumph.  Back to my head on the pillow and it settled down.  What the?  I tried again.  Same thing.  So, I tried moving my head on my pillow….sure enough, if I moved my head a certain way the vertigo would start, fast!  Oh it was BAD!  Head back to neutral!  Positional vertigo!  I have no idea why.  Normally when I have positional vertigo it is in conjunction with a migraine.  So I took my migraine medication.  It didn’t work.  All day Sunday and Monday if I moved my head I was spinning.  My only relief was to lie on my LEFT side.  During the night on Monday it woke me up when I moved my head the wrong way in my sleep.  I almost threw up in the bed.  ughumph!  Then I woke up on Tuesday still feeling very off.  I was so cautious, I wasn’t sure I even wanted to attempt to move my head, I decided to just go to the bathroom.  I hobbled to the bathroom with the help of my walker my head tilted to the side.  In the bathroom I held on to the sink and straightened my head.  No spinning.  Good sign.  I tilted it back.  No vertigo!  Really?  I rotated it around …very…very…slowly…no vertigo.  WOW.  Yes I’m still very wonky and feel…well…off…but I’m not spinning!  thank goodness.

What would this mean if it happened right after my surgery.   Should I be thinking about this now?  Really how can I NOT?  I know I can’t change it if it happens.  So, I have to think about it, I just do!  I need to figure out a better way to handle this situation if it happens during my recovery.  The only way that I was able to really stop the vertigo was to lie on my LEFT side.  I’m having my LEFT hip replaced.  I won’t be able to lie on that side for a while, at least not constantly for two and a half days.  I’m not going to be able to figure this out right now, but I have to think about it.  Getting up and down and keeping to the “rules” on how I can bend my hip was pretty darn impossible too.  But that will have to be done.  Hopefully that will be easier when I have a chair set up for me.  Also being able to just lean to the left in the chair but not put all my weight on that side might would work better in a chair?  If I have a bad attack and I can’t tell what way is up, or down, or left, or right….I have no balance at all….really, it is VERY hard to explain…there is no way I will be able to control how I fall in a situation like that.  I’m not just dizzy, I have no clear vision at all, what I’m seeing is like a camera that is just spinning around and around as fast as it could be….and it doesn’t stop.  I can’t tell what my body is doing.  It’s not just what I’m seeing, my body feels as if things are moving too.  When you are dizzy you feel a little off-balance.  When you have vertigo at its worst you feel as if you are being tossed around.  When I tell people I get vertigo, they often think I get dizzy.  It isn’t the same thing.   It’s funny, when I haven’t had vertigo for a long time and then I have an attack I forget just how bad it is.  Not really….it is there in my mind….but my body forgets.  It has to I think, for self-preservation.  If it didn’t I think fear would control my life.

Imagine walking in your house when it looks like this, but it is moving, and you feel like everything is moving?
Imagine walking in your house when your porch looks like this, but it is moving, and you feel like everything is moving?

As it is now, my body handles it much better than it used to.  As long as I’m in a safe place, lying down.  I ride out most attacks pretty well, thanks to my mindfulness techniques, and a little help from medication.  If I’m walking….that is terrifying.  When this first started happening my head turned the wrong way when I was coming out of the bathroom and I started spinning fast!  The walls moved, the floor moved, I grabbed the wall and held on!  Luckily Stuart was right there.  (I’m so lucky that normally when I need him most he is right there.)  At this time my head tilted to the left and the world straightened.  Oh, I had my head at the wrong angle….duh.  I knew this was positional vertigo.  Remember, living one moment at a time….without judgment.

Since this happened I think it showed me I can’t wait until it happens after my surgery to think about it.  I have to think about it now.  I am going to talk to my physical therapist, and the post op physical therapist about this.  I’m lucky because my physical therapist who works with me in the pool is also a physical therapist who works with patients as soon as they come out of surgery to help them understand the right way to get up and down and stuff like that.  She has already showed me some things so I’ve been practicing.  I think that’s a great idea, that way I think I’ll be much less likely to goof up after surgery if I’m already getting up and down the way you are supposed to.

Not long now, and I will be in much less pain, but I’ll need to be careful.  A few restriction that I think will be hard to stick to.   I was talking to a new friend who had this done for the same reason a couple of years ago, and she said that it went so easily that it made it difficult to follow the rules for as long as they say….but it’s very important to do so.  I’m going to try my darndest!  I’m really good at following instructions, I think, why go through all of this and not follow the recommended instructions?  I sure don’t want to mess up and end up having surgery again.

So, this time I think there is a bit of thinking about the future to be done.  Not really thinking about it as in, worrying, or planning it out and being disappointed if it doesn’t happen….but making plans to be better prepared.  That’s all I can do.  I’m not going to fret about it.  I will try to be as prepared as I can, that’s it.  If things still happen and I end up falling and the worst happens, well then it happens.  I will know I did all I could do to prepare.  There’s a difference in living in the moment, not living in the past, not worrying about the future….that doesn’t mean you can’t make plans try to be prepared.   However, if things go south, don’t get all out of shape, you tried to prepare, that’s all you can do.  Keep being mindful.  Take one moment at a time.  Take care of yourself.  That’s all you can do.  That’s all I can do.

Hip Replacement with Severe Balance Issues….this could be interesting.

On By WendyIn Avascular Necrosis, Chronic Illness, Meniere's Disease6 Comments

Today….what I learned at my doctor’s visit, my concerns, and how I’m preparing for everything.

I was really shocked when I saw the CT scan of my hip.   Here’s a little quick sketch of what I saw:

by w. holcombe
by w. holcombe

As you can see, in late September I had a perfectly round head on my femur, it looks normal.  The CT I had taken on February 13th, showed the femoral head collapsing.  It is amazing how fast this condition has progressed.  No wonder the pain has progressed so much.  As my doctor said, I’m have a square peg in a round hole.  My leg is now shorter than the other, it is throwing every thing off.  The pain in the joint is very bad.  I haven’t talked about it, but I haven’t been able to walk much.  I can’t walk at all without a walker supporting my weight.  I spoke to a new friend who has this in a number of joints and she said this pain is comparable to bone cancer.  Wow.  I don’t think mine is that bad yet.  Some days I think it gets up there though, but not all the time.  It does ache all the time, I hover around a 7, it never goes below a 5…and that is rare…it does spike to a 10, but I’m lucky it doesn’t stay there long.  It is a very sharp pain when I move or try to put weight on it.  I can’t take narcotics.  They make me feel like things are crawling on me.  I can’t take NSAIDS because I’ve had an ulcer.  The most I can take for pain is Tylenol, and I don’t want to take too much of that, it can damage your liver.  So, I meditate, and I really baby my hip.  If I could take narcotics I could probably move around and do more.  As it is, just the trip to the doctor on Monday left me in so much pain I didn’t sleep much on Monday night, and Tuesday was so bad I couldn’t get up long enough to get myself lunch.  I simply couldn’t do it.  Luckily, Stuart had gone to work very early and came home early, so I got something to eat and much help for the rest of the day.

I got a LOT of information from my doctor.  He told me that many people could have received the same amount of steroids I did and never acquired Avascular Necrosis (AVN).  Guess I’m just lucky.  *grin*  Some people may just have a predisposition to it.  Of course, thinking back, I have had a whole lot of steroids.  He also said this is progressing fast.  There are some other treatments for this, but most are just stop gaps and you end up having to have a hip replacement anyway, and if your femoral head has lost it’s shape, like mine has, you can’t do most (if any) of them.

So, hip replacement is a GO!  I don’t have a date yet, waiting for the appointment setter to call.  I’m sure it will be a little while out, because of things that have to be done before hand.  I have a whole packet of things to be done, things to help you understand more about the procedure and things that are going to happen afterward…..it’s very thorough.  If that weren’t enough, there’s a class, yep a class to explain everything you may have questions about; the procedure, home health care, physical therapy…just about everything.  Don’t know how I’m going to sit through a class without excruciating pain, but I’m going to try.  Stuart said he’d go alone, but I think I should go.

There are a lot of people who have joint replacements, obviously, for them to have a class.  They have really thought of everything.  There will be a home health nurse that will come out twice a week to check my blood because I will be on coumadin to reduce the chance of blood clots.  This has to be monitored closely. (often they just put people on a high dose of Aspirin, but again, I couldn’t do that because of the ulcer thing) A physical therapist will be coming to our home to work with me instead of me having to try to go out to physical therapy.  My doctor said that PT is mostly just walking.  There will be post op services coming out to help set up the house for us, if I didn’t already have one, I’d be getting a walker (I may be getting a new one if they can get me one that fits in the bathroom), a tub bench, and a 3 in 1 bed side toilet.  I wondered what the 3 in 1 was, that means it works a bed side toilet, or railing to hold on to use your own toilet, or to use as a raised toilet seat.  Funny thing, I have one of these back in Durham, Stuart got it a long time ago thinking it might help when I have vertigo, but it didn’t, if I could sit up, I could go to the bathroom.  (you can’t really sit up when the world is spinning like crazy!)  I’ll also get a grabby thing to help me reach things so I won’t bend my leg more than a 90 degree angle.  Also, a special thing to help me put on my socks and shoes.  Stuart laughed, both of those things have been his job for a long time.  Due to my dizziness I can’t pick things off the floor, I was shocked that my doctor knew this!  I haven’t been able to put on my socks and shoes since September.  So this will be a relief for Stuart, and make me feel much more independent.

OH, I forgot to tell you more of what my doctor said about the surgery itself.  I will be in the hospital 1 – 2 days.  I won’t have anesthesia, that doesn’t mean I’ll be awake during the operation, but I won’t be put under a deep sleep.  I’ll have a spinal block.  So I won’t feel all icky, I won’t get sick, and I won’t have to worry about them putting a tube down my throat.  It’s kind of cool.  He told me that most people with this condition tell him that the pain they have now is instantly gone after the surgery.  How cool is that?  He said I will be sore from the incision but I probably won’t hurt worse than I do now.  He said first off there will be a lot of local anesthesia that will take a few days to wear off and that’s when the incision would hurt the worse.  He has been impressed that I have been able to tolerate this much pain without pain medication, so I think I’ll be able to do it.  However, I won’t be babying this, I’ll be working it hard with the PT.  So much more Tylenol.  Maybe a Tramadol now and then, but even that makes me feel funny if I take it too often, but I can take it every couple of days.  He said he will make my legs the same length….yay!  He said I may out live my hip replacement.  All I can say about that is…..life is unpredictable, so no biggie.  I could get this hip replacement and get hit by a bus in a week. No one knows the future.  *shrug*

I’m not afraid of this hip replacement surgery.  I really haven’t been afraid of the surgery itself.  I’m afraid of the hip replacement surgery in conjunction with the rest of my stuff.  Having a severe balance disorder with sudden vertigo that comes on without any warning could be a very big complication to my recovery.  As my doctor said, we can try to plan and prepare for everything, but this is something we simply can’t change.  It’s something we have to hope luck will be with us.

I’m already a VERY CAREFUL person.  I use a walker all the time.  I stay close to walls so if I do have a vertigo attack I have something I can grab and try to fall easy, just slide down the wall.  However, I still fall, OFTEN.  I fell the last week in such a position that if I was recovering from hip replacement surgery there is no doubt I would have dislocated my hip and possibly fractured it.  I simply let go of my walker to sit on the couch and suddenly got dizzy…..WHAM!   This wasn’t even full fledged vertigo, this was just a tilt of the world.  If I was hit with bad vertigo there would be no keeping my balance no matter how hard I tried.  I can’t tell up from down the world is spinning so fast all around.

This is my concern.  Recovering from hip replacement surgery with Severe Meniere’s Disease…or “more than Meniere’s Disease”  what ever they want to call it.  A severe balance disorder and sudden onset vertigo.

Perhaps I should get a Bubble Wrap Suit???  Too hot?  Probably so.

Stuart is going to take time off to be with me during my time in the hospital.  Of course, if he’s completely bored he can work while he’s there.  My doctor said the room I’ll be in is big and has a day bed so Stuart can stay right there.  Since I have a special diet, we can pack me up some food and they will warm it up for us there.  He said he wouldn’t trust the hospital to get it right.  Yeah, I wouldn’t either.

Stuart will most likely be able to work from home for most of my recovery period.  At least for the most difficult part. We don’t know yet, because we don’t know when things will be, or how long it will be.

Going to get our house more prepared.

Not going to worry about my balance problems and my recovery.  I can’t control the future, so no need to worry.  Just be aware and extra mindful of every step I take.  Prepare as much as I can….but worry….no.  Be afraid…no.   One moment at a time, right?

image from sayw.com/quotes
image from sayw.com/quotes

 

Back? Hip? Pain! What is going on…. We may be closer to finding out..

On By WendyIn Chronic Illness, Hip pain10 Comments

Last Wednesday I saw the spine doctor, and good news, the herniated disc is doing great.  So, why am I in so much pain?  My physical therapist and spine doctor think it is my hip.  So do I.

(If you are ever in Charlotte, NC and need a recommendation for a spine doctor, give me a shout out.)

The spine doctor I see is a really good doctor.  He has a great bed side manner.  I never feel rushed when I’m in there, he makes sure to always look at me when he talks, he explains everything very well, and he is very thorough.  He examined me and decided I needed to see the hip doctor again.  I told him how I did not have any respect for the last hip doctor I saw, and why.  I’m not sure if I mentioned it here, and if I did, it probably bears repeating.  The last hip doctor breezed in, did not examine me, and told me that all my problems were from my back.  I asked him why then did I have hip problems before I hurt my back?  He simply ignored me, and said nothing showed on the CT scan, so good news, I had nothing wrong with my hip, good bye.  The spine doctor decided I should see a different hip doctor.  One he said he was sure would treat me with much more respect.  thank you very much.  I will not go to a doctor who does not respect me.

Today I had an appointment with the new hip doctor.  First I had an x-ray of my back.  After all the stuff going on with my back too, he wanted to get a view of it, and looked like no problems there.  Yay.  Then the doctor’s assistant came in and got a good history and did a good exam.  He told me what he suspected and that he wanted to go over everything with the doctor and he would come in soon.  I then had to have another hip x-ray to compare to the one I had in September.  They suspect I may have necrosis of the hip bone, caused by steroid use.  I have been given steroids a lot over the years of my life.  Doctors seem to hand them out like candy, they don’t think about the long term effects of what they can do to you.  Not once when I have been prescribed steroids have I ever been asked how often I have been prescibed then in the past.  Well, they can kill your bones.  The bones that have blood in them, it can kill the blood tissue, then the bone will collapse on itself.  Pretty gnarly huh?

Image taken from the Journal of the American Academy of Orthopaedic Surgeons linked from http://osteonecrosis.me
Image taken from the Journal of the American Academy of Orthopaedic Surgeons linked from http://osteonecrosis.me

The x-ray that was taken in September had a very round ball socket, the one taken today looked a little bit flatter on the top.  It could have been just the angle of the x-ray, or it could be the beginning of Stage II.

If you are interested you can read more about the different stages here: Osteonecrosis.  Right now it looks like I’d be around Stage II, just starting to show outward signs….maybe.

My doctor wants me to send in my information about my cochlear implants to the MRI people there to make sure I can’t have an MRI under any circumstances.  They said sometimes they can do something and they can do them.  So I’m sending in my information.  I’m very wary about this, and think I might just refuse it even if they say it’s alright.  If they try this and (even if it doesn’t rip them out of my head) if it damages them, I don’t think it would be covered under my warranty, and I don’t want to have to have unnecessary surgery to replace them.  So unless they’ve done this many, many times before, I just don’t think the risks are worth the benefits.  I think he will understand that.

If I can’t/won’t get the MRI he said I will get another CT (Computerized tomography) scan.  CT scans are cross sectional.  Normally they are done at a certain width apart, I forgot how wide he said, he will order my new one to be done much closer together to try not to miss anything.

If you were reading my blog before when I went to the hip doctor and had the hip injection and it didn’t help at all  (another reason the original hip doctor said there was nothing wrong with my hip) this doctor said the hip injections often don’t help with this issue.

I was very impressed with this doctor and his assistant. He was very behind in his schedule, but I could understand why, and I didn’t mind.  He did not make me feel rushed when he was with me, he was very careful to make sure I understood everything.  He was great.  Also, before he came in to actually see me, I was seen by his assistant, and I had 2 sets of x-rays.  I wasn’t just sitting there twiddling my thumbs.  I was also impressed that when I got there he had already reviewed my chart and had questions waiting for me and orders for the back x-ray.  He walked in and knew all about me before he started talking to me.  I love it when a doctor does that!

This is a scary diagnosis.  However, if this is what it is, it is a diagnosis!  It can also be fixed pretty easily…I’ll have a hip replacement.  There are a lot of things that a lot of doctors do to work on this that don’t replace the hip, but there’s a lot of risk and most treatments don’t work very well. shhh, don’t tell anyone I said that.  I don’t want to worry people who are having those treatments done.  Just my opinion from what I have read…today…and from talking to my doctor.   Looks like most people have to have their hip replaced anyway, after many more years in pain.   I’m thinking I’d rather just get my hip replaced now.  I know I’m a bit young to have it done, but really not all that young, and with the new technology I hope the new hip will last as long as I do. That is…if I have to have it done.  I can’t predict the future.  Just preparing my mind for it in case that is a possibility.  Heck, my father has had both hips replaced, and I think one he has had done twice, or they are talking about redoing one of them?  He’s hard to keep up with.  All his artificial joints….shoulders, knees….ect….He’s bionic!  He has all the body parts, I have the ears.  Now if I get a new hip, I’ll be working on body parts too!  hahaha

I will be going back to PT, working out in the pool.  The doctor wants me as strong as I can be in case I have to have any kind of surgery.  Also he doesn’t want that leg to get too weak, and I can work it out in the pool because it is non-weight bearing.   Maybe I will hurry up and take this weight I gained from the steroids off and continue to lose more weight!  According to the scales at the doctor’s office I’ve lost about 8 of he steroid pounds.  (I gained almost 16 – that was depressing!  I’ve worked hard to take this weight off…and I want to keep taking it off! Go weight….get off my body!  Not that my body isn’t fantastic just like it is, but I want to make it easier on my hip…less weight to carry around….less pain!  I do not think beauty is determined by size!!)

 

drawing by w. holcombe copywrite - 2015 quote - unknown
drawing by w. holcombe copywrite – 2015
quote – unknown

Now for some awfully sweet news.

When I walked in this office I was met by 2 of the nurses there that just grabbed me and hugged me.  They we so happy to see me and to see me in less pain than I was in the last time I was there.  I also had a small vertigo attack last time I was there.  I’ve only been there 3 times, and I haven’t been there since October, but these girls remembered me and were so thrilled to see me.  I was amazed.  I told them I couldn’t believe they remembered me like that.  They said, they don’t remember everyone like that, nor do they treat everyone like that…only the nice people.  They kept saying how wonderful my spirit is.  How nice I was even though I was in so much pain.  I just cried.  My nurse couldn’t believe I was crying.  Just think, I am home alone most of the time, and on the rare occasion when I go out it is usually to the doctor’s office, I’m amazed I could touch a person’s life like that, in the little amount of time I see people.  We never know just how we may touch another person’s life.  So watch what you say, and always try to be the best person you can be.  On a day when you feel scared and a bit down, you just might run into a couple of people who grab you and hug you and tell you how special you are because you are who you are, and you just make them feel special because of that.  It was an amazing feeling!