Regrets and nerves

I know im not active as much recently, iv just been in my own bubble i suppose. So for those who dont know me il do a quick recap. Im 20 years old, had my complex thr on the 11th of April so about 16 weeks post op, i had collarbone surgery 6 weeks ago which seems to be healing well. Iv had 14 surgeries in total at the moment, 13 for hip and then the collar bone.

So recently im beginning to wonder if iv made the wrong decission, before surgery i was in serious chronic pain, had no life, no mobility, unable to work and so on. And now im exactly the same but the pain is even worse. My new hip is still hurting, still no mobility, my right hip seems to be getting worse and my back pain is even worse than usual, lately when im walking certain areas of my back feel like they are being twisted and then it starts grinding and popping and cracking, my knees are doing the same, then i have the usual knee and back pain from norma activities like washing the dishes, sitting, standing, cleaning the lizards out and so on.

so im general i just feel horrendous, i feel like im getting know where. Before the surgery i made the huge mistake of getting my hopes up thinking things may be a tiny bit bet, i knew id still have the issues with my back and knees but now i feel like everything has just gotten worse. I dont want sympathy, i just want to know if anyone feels the same or is experiancing anything similar. 

It doesnt help that im intimidated by my surgeon and i feel as if he doesnt take me seriously or listen to my problem.

ALso ill include some photos just for fun recent pictures of my 2 new scars, my hips before surgery, hips now, and hey maybe ill even throw in the lizards because i know a few people had asked to see them since iv just gotten 2 new babies 2 weeks ago top row; Enna and Tango, Bottom; Aniera and Lixue, these 2 are my new girls, they are 6 weeks old, they are the tinest things iv ever laid eyes on, so cute

Sarah,

My dear, I just want to cry for you - so awful to be in more pain than before, at least my pain decreased after my operations.

I can see your parts are at least in straight unlike mine.

Surgeons are well known for being uncommunicative and 'offish'.  Mine was much the same, my new surgeon at RNOH Stanmore is so different.

Love your new lizards - very cute.  My son worked for several years as a zookeeper, so we are animal friendly here.

It all sounds like you need (and deserve) a new more sympathetic surgeon.

Healing hugs

Graham

How did you go round getting to see a new surgeon? My surgeon who i see for my collr bone is amazing. My ohysio reads my notes to me and he actually wrote 'sarah is a pleasent young women who is a pleasure to be work with' or summit along those lines. Hes amazing, unlike my hip doc.

How is everything going for you now?

My lizards are my world. Im a huge animal lover. Im currently watching dog rescuers on channel 5 amd its making me sad so me and my big girl tango are having a cuddle 😂

Hi Sarah! I know how you feel! I am in a similar situation.I had my left hip,replaced in mar ch 2015,& have got issues as I am in so much pain,I am a carer for my Disabled Hubby & had to get back into doing all the chore was social services were so annoyed with me!! I need my other hip doing & both knees! But I am so scared & tense all the time.Further more the hosital wanted to do an epidral,but I was in a bad state with Anxiety! Where in UK are you from?regards Amanda h

Im sorry to hear you are in so much pain. Do you mean they want you to do a spinal for the surgery? Im in sunderland area in the northeast of England. What about you? Xx

Im sorry to hear you are in so much pain. Do you mean they want you to do a spinal for the surgery? Im in sunderland area in the northeast of England. What about you? Xx

Hi Sarah,Thanks for getting back to me! They wanted to do a spinal last time but it didn't work as I had a huge meltdown,.I live near Guildford Surrey.i have Reflexology once every two weeksegards. Amanda h

Sarah

I am so sorry that you are still in pain.  Lots of (gentle) hugs.

The only thing I can suggest is - if you find your hip surgeon intimidating, do you know of anyone of a forceful character that could go with you the next time you see the hip surgeon?  You could get together with this person beforehand and make a list of things that you want to discuss/to be resolved and get your 'Lady Bracknell' character to speak to the surgeon on your behalf.......

 

Sarah

I'm so sorry to hear you are in pain.  Lots of big (gentle) hugs.

On the practical side, if you find your hip surgeon intimidating have you considered taking a formidable character along with you the next time you have to meet him?  You could get together with your own intimidating person beforehand and make a list of issues you wish to discuss/need resolving. Your very own 'Lady Bracknell' could then take your surgeon to task on your behalf.

 

Hey there!! Well I'm not sure if mine rthr was going to be a bust or good thing because 3 weeks after surgery at my f/u appt it was discovered I dislocated that hip! Not sure how or when. Dr wound up having to redo the whole thing! Now I am in inpatient rehab, per strict dr orders NO WEIGHT BEARING OR MOVEMENT OF HIP FOR 6 Weeks!! Talk about a real PITA!! Per the OT & PT ppl I'm doing really well getting around I'm just scared as hell cause I don't want anymore setbacks!! Plus I really want to go home!! 😥 I cry everyday and night. Some of the aides make me feel like I'm being a nuisance. And I have to be sure PT knows what I cannot do!! Thursday I go see surgeon to see how hip is and to take off this wound vac he put on me. I hope you get to feeling better cause I know how disheartening and angry you can feel when you feel things are worse than before. Hugs, 🤗🤗 Linda D

Dear sweet Sarah,

My heart goes out to you for all you have, and are still going through. Like Chloe, I feel that you should consider bringing someone with you to see your surgeon - someone like Hugh Laurie who won't stand for any bull****.

But truly, I think you need a consultation between the surgeon, GP and anyone else who has contributed to the plan for your surgeries and recoveries. It is hard for me to understand why there isn't some form of case manager for your case and care. This should not be a string of 'one of' decisions. And the case manager should be actively helping to sort out, in fact manage access to other specialists or practitioners needed to deal with post-surgery problems. It simply isn't right for you to be in this continuous series of surgeries and pain with your life virtually on hold.

Perhaps you should start a new post, specifically asking for health professionals in this forum to advise you on next steps. Something along the lines of: UK Nurses, docs and physiotherapists please advise ...

Thank goodness for your lovely boyfriend and your treasured lizards - stunning by the way. I a m glad you have them in your life.

With much sympathy, love and hope for you,

Linda

dear sweet sarah, 

I was hoping you were getting so much better and less time to be on the forum .. I am so sorry to read that you are not ...

I don't have what you are going through however know about feeling being ignored and not taken seriously - 

what beautiful names you have given your babies !!!!!

I am with all the other loving forum members -

big warm hug and don't stay away too lomg okay ?

renee

I had a spinal and GA for mine because my surgery took 7 hours. I was terrified about the spinal but it was the only lart that was painless. Oh very nice. Do you think reflexology works?

I had a spinal and GA for mine because my surgery took 7 hours. I was terrified about the spinal but it was the only lart that was painless. Oh very nice. Do you think reflexology works?

Thats usually my dads job but its very difficult for him tocome with me as mainly my appointments are during his working hours and as a twacher its hard to take time off

I was none weight baring to. Its hard. I hope thing looks up for you soon. Hopefully after the furst stage of recovery everything will start looking up for you

Thats a very good point you make. Ill consider that. Maybe ill make an appointment to speak to my GP too.

Thankyou. My little babies are my entire life. Like my world literally revolves around their care because its the only thing i can do. Well cleaning them out is agony but i do it because its for them haha

Thankyou renee. Ill try not to. Sending you love and hope everything is going well for you xx 😘

Hi Sarah,

Aww Sarah, I thought things would get better for you,but looks like the opposite has happened, but I still think your a strong young woman and maybe things are just going to take a lot longer for you.  Keep your chin up and keep fighting xx

Love your geckos by the way.