No surgery for me

[MammaT]

I’m watching too @Gidget. Agree with mojo333 that you should get additional opinions. There are daily examples of people beating all the odds given to them by medical profession.

Good luck with rehab. You are worth the effort.

 

[Layla]

We're here @Gidget
You're not alone. My heart goes out to you in reading your update. I'm so sorry.
Prayers for strength and that you're soon pointed in the right direction to get the help you need

 

[Gidget]

Update...OS is in Japan (lucky man) and Rehab Doc spoke to him on phone. Almost no possibility of hip surgery. He will come and see me here next week and talk about symptom relief...painkillers etc.

I had 2 units of blood in a transfusion last week and that usually lasts a month but the blood test I had done yesterday shows I need another blood transfusion today. That’s part of the reason Rehab Doc says I can’t have surgery. Bone marrow is barely functioning and surgical risk of complication is high. Also the usual Vit D and calcium is low despite tablets so bone recovery wouldn’t be good.

I’m pretty much resigned to no surgery and being wheelchair bond now but I’ll keep a glimmer of hope for when the OS sees me next week. I’ll still do the hip strengthening exercises as well as my general rehab stuff in the gym.

On a much brighter note (sarcasm)...this morning I’m having an assessment to see if I’m safe in the bathroom by myself. This assessment is done every six months and involves, going to the toilet and showering, drying and dressing, cleaning teeth etc, with a perfect stranger watching every move. It’s such fun! You know those nightmares you have where you suddenly find yourself in the street naked? Kind of like that but with a grade attached. I’m studying for an A+.

I’ve already failed the time management part this morning. We are supposed to order breakfast (oh, yes, very posh room service...anything we want bacon and eggs? Grilled tomato? Omelette? Cereal? Croissant? ) by 6.30 am so it’s delivered by 7.15 and finished in time for the bathroom safety assessment and in gym by 8.30. Oops...what do I do when Doc turns up at 6.30 and I don’t order breakfast (cornflakes, toast and coffee...I’m a creature of habit) till 6.50am. Then have to wait for blood test for cross match and insertion of cannula...I think I’ll score a D-.

 

[Hippielife]

Your story is unique and I hear a lot of your positive attitude in your posts which will help you over come the odds. Never give up HOPE !
This is just a bump in the road. Your doctor will do everything possible to help you thru and onto a better path . Giant hugs.

 

[MammaT]

Wow @Gidget you just have so much stuff going on. Perhaps os will reconsider if transfusions can get your levels us and they maintain. It’s good that he is coming in to personally evaluate you.

Interesting tests they are giving you. Do you ever wonder how many of them the staff would pass?!

It is good they want to assess your safety risk but that must be terrifically awkward.

Will keep hoping you receive help you need. Your determination is awesome.

 

[Layla]

Hi @Gidget
Your sense of humor in the midst of all this is inspiring. You're amazing!
Just wanted to send a hug for Valentines Day some love and a flower too
Hope your evening is peaceful!

 

[Gidget]

Thanks all. I’m back from gym...almost fainted but nothing new in that. I scored an A+ on my bathroom assessment . I even did weights on my legs in gym. Spoke to recovering THR patients having PT. I looked at some who were in their 80s, morbidly obese, had heart problems and obviously not very fit and it made me see myself as totally useless if they could get surgery and I can’t. On the other hand (glass half full), does that mean I might get surgery because I’m 61 with good lungs and low normal weight.

I’m thinking of being subtly ingratiating, using compliments and flattery (“ooh, I hear you are the best at hip surgery”), giving presents of chocolate and cakes to the OS and then he’ll feel obliged....it wouldn’t be bribery and corruption, more like gentle persuasion.

All joking aside, I’ll take whatever the Docs recommend and be content. If they genuinely think it’s too big a risk for the benefit then I’ll just have to bow to their greater knowledge and experience. That’s what they spent decades learning their professions for. It’s up to them to do the risk/benefit analysis because I have a conflict of interest and I might be a bit biased.

The nurse just told me the blood transfusion will start in half an hour so I’ll go to the toilet etc before I get connected.

Thanks everyone for your prayers and wishes. It’s lovely to have someone to talk to about my thoughts and feelings.

Bye.

 

[Gidget]

Nothing much happening. Blood transfusion given yesterday, blood test this morning looks a lot better and I could do more in the gym. Was visited by Oliver, a wolfhound therapy dog...oh so beautiful. He (and his owner) stayed in my room about an hour and a half. It was perfect timing for a fur cuddle because I was missing my little Lily dog so much.

I just read my old MRI report (2011) properly...it mentions subchondral signal hyper intensity of the femoral head amongst the other things like anterior superior labral tear. I must have seen this part before but just skimmed over it. I decided to Dr Google it today and I kept coming up with sites for AVN.

Is it possible to have had AVN for 6-7 years and not know it? Does AVN cause arthritis and bone spurs? I did read one article but it was in professional jargon and I didn’t comprehend much of it. I’ve never had my other hip xrayed or scanned even though it hurts too and I have mentioned this to my GP...I’m just wondering if I should have both hips checked.

It’s Friday night here and this weekend I’m only having one 1 hour gym session tomorrow morning and I’m expected to rest for the rest of the time. It’s going to be a very long weekend.

 

[MammaT]

Glad blood test looks better. You have good questions regarding avn. I know there are several on here who have struggled with it.

The time with the wolfhound sounds great.therapy animals are wonderful.

Your body does need rest this weekend. Hopefully you can find some distraction to help pass the time.

 

[Mojo333]

Is it possible to have had AVN for 6-7 years and not know it? Does AVN cause arthritis and bone spurs? I did read one article but it was in professional jargon and I didn’t comprehend much of it. I’ve never had my other hip xrayed or scanned even though it hurts too and I have mentioned this to my GP...I’m just wondering if I should have both hips checked.

@Josephine would be the one to ask.
I don't believe AVN causes arthritis but may be the other way around. I am pretty sure AVN can occur without osteoarthritis? I also think AVN can cause bone spurs as can osteoarthritis.
I am certainly not the expert...we will see what the expert says.
Hoping you can find an OS that specializes in complicated cases as your cancer diagnosis must also play into surgery/recovery issues.
Please exhaust all possibilities...I'm rooting for you!

 

[SaraK]

I'm not a medical expert but with my first hip I had a subchondral "insufficiency fracture" with collapse. I was told it wasn't AVN but could sometimes be confused for it.

 

[Josephine]

Is it possible to have had AVN for 6-7 years and not know it?

Perfectly possible provided it stays in a mild state.

Does AVN cause arthritis and bone spurs?

It doesn't cause it but the results of AVN are very similar to OA.
And no, it won't cause bone spurs/

 

[Mojo333]

That's why we ask the expert. Of which I am obviously not one.
Hope you can find some peace this weekend Gidget

 

[Gidget]

Thank you. I was on a lot of steroids when I first started getting hip problems and I see where that can cause AVN. If that is what the problem has been I’m going to be a tad cranky that the OS in 2011 didn’t mention anything, didn’t investigate further and didn’t ask me to come back for follow up monitoring.

 

[MammaT]

Can’t blame you for being cranky @Gidget. Unfortunately that’s what happens wth some docs. All you can do is move forward from where you are.

 

[Mojo333]

Gidget is beating cancer! And I know how tough you must be.
I pray you get some solutions but in the meantime please know so are rooting for you.

 

[Gidget]

Wow, I’m in a rehab unit and I went to do some laundry and the clothes dryer is wall mounted and completely out of reach. Wouldn’t you think if any place is going to be wheelchair accessible/friendly it would be a rehab centre? Just like most people, until it happened to me, I never realised how many things are just impossible for people with disabilities.

 

[Mojo333]

That does sound really dumb!
?
How are you doing Gidget? Every time I type your name autocorrect changes it to Fidget. So if I forget to edit it, don't think I'm calling you names!
I remember Gidget was Sally Fields character on old TV show.
It's the cutest name ever.
Hope your day is good

 

[Gidget]

Hi, I thought the day started off well and then....the Rehab Doc came and gave me the “live in reality” talk.

She said that she is going to recommend to the OS that I don’t get hip surgery. She said that given my history of ICU admissions, unstable blood pressure (it drops very fast and I lose consciousness due to neuro problems), low white cell counts and low immunity, bone marrow failure AND no perceivable benefit to my mobility....she can’t see the point of risking my life or having major complications and being in worse pain.

I pointed out that the man in the next room was 77yo, unstable diabetic, morbidly obese, had a heart attack, had 2 stents and refused to do anything to help himself and that he got a knee replacement. Rehab Doc said that I was worse medically...WTH? I might be living in La La Land but I don’t feel bad! I feel like I can and want to, live a full happy life. I never thought being optimistic and positive would be a bad thing.

I still intend giving my best persuasive attitude when I see the OS tomorrow....I have nothing to lose.

I’m adding a photo just to show that I’m not a decrepit, half dead invalid.

PS, forgot to mention....Gidget was the name of my old dog who passed away a couple of years ago. She was Gidget the Fidget or Gidgee Would (we have a wood in Oz called Gidgee). She was a Kelpie and I will always miss her.

 

[MammaT]

I agree with you @Gidget- I would give it my most persuasive argument. Your os is in the best position to determine what it can do for your mobility. You certainly don’t look old and decrepit.

Your os may have some ideas the rehab doctor doesn’t. Good luck with presenting your case!