No surgery for me

[anny]

Oh Gidget ....how exhausting it must be to have to keep on pushing for the right, knowledgeable treatment......unfortunately I always second guess my GPs after seeing one with a hip bursa, and she reached on her bookshelf for her medical book to look it up....I was dumbfounded that I seemed to know more about it than she did! Walking on broken bones doesn't sound good.....I can understand that you want to hang on to your ability to mobilise, but maybe use the whchair until you know what your options are? You don't want to risk making it any worse at the moment ....can you email the Physician you saw in hospital, who sounded at least reasonably knowledgeable and proactive, and ask them to help.....you at least need to talk to someone who can answer these questions. Do you have Disability advocates or a Health and Disability Ombudsman you could contact for backup? You really don't seem to be getting the information and support that is surely your right.....it's all very well throwing tons of money at you but you really need tons of info too to base any decisions on. Tagging @Josephine for you to see if she has any ideas hugs from NZ

 

[Gidget]

Finally, my new chair. Happy dance.

 

[Mojo333]

Yay!
Hope it's got a horn on it (for everyone else's sake)
Hope this makes your life easier!

 

[anny]

Looks pretty cool Gidget.....I like your colour scheme.....are you going to have a launching ceremony?

 

[Gidget]

Well, I went to the Dept of Transport today and registered my green demon. I can now officially use my new mode of transport. Yay!

I need some advice if anyone could help. As I wrote before, my GP referred me to the local hospital fracture clinic. I received a letter from the clinic today saying that my fracture will heal without any need to see them and to keep seeing my GP if I have any concerns. Well, I do have one concern....the hospital sent me a brochure on how to treat a 5th metatarsal fracture. That’s okay, I have 2 fractures in my 5th metatarsal but that’s not why I was referred to the clinic. I was referred for the fractures in my cuboid and calcaneus. It makes me think the clinic overlooked the other 2 fractures. As I also said, I don’t have a regular GP any more because he resigned and he’s not going to be replaced for a couple of months. In the meantime I get to see whoever isn’t busy. Consquently I’m not going to have any standardised care. I don’t know whether to pursue the issue with the fracture clinic or try the GP again or just leave it the way it is. I’m still wearing the moonboot and I have no idea how long I’m supposed to keep it on. I was told 6-8 weeks initially when only one metatarsal fracture and a chip of the cuboid were found, before the CT which showed more damage.

If you were in my shoes (or moonboot) what would you do? Confused.

 

[anny]

crikey...these medical people aren't known for their communication skills are they! I did a brief google for Lisfranc fractures, and anything I can find about moonboots seems to be linked with their use after some sort of fixation surgery. I'd suggest that you contact the fracture clinic and ask for clarification about your treatment....I'm sure Australia has a similar Patients' Rights thing as NZ, that says you have a right to full information about your treatment etc in a way you can understand it.....in fact, this is the link for the Oz one in case you've not seen it. Think you'll have to be the dripping tap.....keep at them until they give you the info you need

https://www.safetyandquality.gov.au/wp-content/uploads/2012/01/Charter-PDf.pdf (that's the abbreviated version)

 

[Gidget]

Yes Anny, I’m not very confident about the knowledge some of these doctors have...or maybe they have knowledge and just don’t give two hoots.

I decided to Google Lisfranc injury myself and came across this in an orthopaedic journal.


The discoloration on the bottom of the foot is very suggestive of a Lisfranc injury.

The photo above was part of the article.

This is my foot more than 3 weeks after the fractures. I’m sorry it’s not very clear but there’s still remnants of bruising under my foot.

Can you see why I’m not convinced that the fracture clinic looked at my CT or the GP notes about the other 2 fractures. At no stage did I hurt where the bruising is. All the other bruising and swelling was lateral and dorsal.

It’s been over 3 weeks now so I suppose it’s not going to do any more damage if I wait a few weeks and ask the GP to re CT it to see what’s happening with the fractures. They’d be partly healed by now so the displaced fracture would be healing in the wrong position...I think ? If it’s not ok now it’s probably too late to do anything about it.

Oh well, as Ellen says.

 

[anny]

Hi @Gidget....how's your foot these days...hope it's feeling much better. Have the docs said anything more about the injury/treatment? Hope you're able to get out and about more now you have some funding and that snazzy wheelchair....let us know how you're getting on

 

[Gidget]

Hi Anny. You must be starting to become more mobile by now. Hopefully pain free and starting a new part of your life. I’m afraid I haven’t really been on here much and when I have, I haven’t had anything to say.

I ended up being in the boot for 9 weeks but it’s all good now, only a bit of pain in my Achilles where it inserts into the bone and a feeling of being unstable but that’s probably just lack of confidence. The CT showed calcification in the tendon so that’s not surprising but I’ve been given some stretches by the physio and I’m sure it will improve.

On the health front it’s been a bit turbulent. As part of the investigation into the Sarcoidosis that they found on skin biopsy, I’ve had a CT of the chest and I’ve got Bronchiectasis, atelectasis and enlarged lymph nodes with a couple of spots in the bones of my thoracic spine. I’m going to have biopsies of the lymph glands in my chest to rule out lymphoma. Then I had a bone density done and I have osteoporosis. So on Monday after my blood transfusion I’m having an infusion of something or other for the osteoporosis. It’s only a once a year treatment which suits me. Looks like I will have to have a PET scan in the near future too. Somehow or other I can’t see my hip being fixed anytime soon.

I’m feeling rather blessed at the moment because the Disability Insurance Scheme has been extremely helpful. I now have a cleaner every week, a gardener every two weeks, I’ve had the gutters cleaned, the outside of the house washed down and all the paths and driveway pressure washed. I’ve had an OT do a home assessment and he’s recommending a wheelchair accessible vanity, remove the shower hob, add a T bar rail and adjustable shower head in the bathroom, widen out the doorways to the office, store cupboard and walk in robe, new easy to use power point switches and a new back door to be made with a ramp so I can access the backyard. All paid for by the NDIS. I’ve also been told I can buy (have already bought, just waiting for delivery) an Apple Watch series 4 as a falls and seizure detector. I’ve also just attended the Merchants of Bollywood show and the transport was paid for by the NDIS and my friend attended as my official PWD companion and her ticket was free. I’m considering having my meals delivered, the preparation and delivery costs will be covered by NDIS, I just pay for the food component. At the moment I live on frozen meals, take away and the occasional meal cooked by my Aunt and I’d love some healthier meals. I’m considering ordering from a company that does the paleo food diet. So all in all, I’m extremely fortunate. At least the taxes I paid for 40 years were worth it.

Oops, it’s 18.20hrs and I haven’t ordered dinner (I’m in hospital...again!!!) and I need to order before 19.00hrs so I better get my act into gear. Looking forward to the glass of red wine with my Asian Pork and Hokkien Noodles. Yummy!

 

[Mojo333]

Good to hear you are living life despite all of your medical problems...
Not good to hear you are back in the hospital.
Hugs Gidget.

 

[anny]

Hi @Gidget.....how are you doing? Hope your hospital stay was short.....are you out of the boot now and did it do the trick? Osteoporosis eh?....bummer! I've got it in my spine and wrist....a little bonus of my coeliac disease. I take risedronate, once a week.....hoping that now I'm g/f (and VERY compliant!) the osteop will have got a lot better and my next dexa will show an improvement so I can come off the rised....it took a year of thinking and researching to reluctantly agree to take it, I have a very patient and understanding endo Your house mods sound very similar to what ACC did for my daughter.....made all the difference in helping her be independent. I do hope you're pleased with yours. And how are you getting on with that snazzy wheelchair....are you terrorizing the neighbourhood with your wheelies? If Lily is anything like my daughter's little dog I bet she loves a little ride on your lap!

Weather's getting warm here, not at all Christmassy but we'll do our best.....hope you have a lovely day, Gidget, Merry Christmas :re-snowman:

 

[Mojo333]

Wishing you comfort and joy this holiday season!:merry christmas:

 

[Mojo333]

Happy New Year, @Gidget !
Hope the new year brings you peace, happiness, excitement, and joy.

 

[GrannyC]

@Gidget Wishing you a happy new year and a 2019 filled with hope, happiness and improved health!!

 

[Sarge]

Remission 1.5 years, I still have a flush every 21 days for one more year before the Doctor will think about removing my stint: Non-Hodgkin's Follicular Lymphoma, Stage three
I too have been told I had limited time to survive the cancer, but treatment with TREANDA and Immunotherapy following each Cancer treatment every 21 days, then an additional year of immunotherapy every 21 days has resulted in remission. I truly believe God has other plans for me. I pray daily for His will and to be useful. My volunteer time has stopped as walking is very painful and stiffness, as is standing too long. climbing the Church Choir steps is becoming extremely difficult.
Last week I was told one of the determinations for hip surgery included a rating of" mild, moderate or severe". The surgeon I have "Very Severe" OA.
I have difficulty putting on my shoes and socks on my "bad-hip", no flexibility issues on my "good-hip".
We seem to have very similar stories. I am concerned about "falling out of remission, Oncologist has approved surgery, and did the Heart Doc for my Murmur (heart defect). Oh I just saw the date on your post is nearly one year ago in Feb 2018.... How are you doing????