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Offline Karen10

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Phobia of surgery/doctors
« on: July 05, 2011, 10:52:55 AM »
Hello,

I am new to this forum although have been reading quite a few posts recently.  I was hoping there may be someone out there that can give some thoughts on my situation or has even been in the same place as me as I feel quite alone at times.

7 weeks ago I ruptured my mcl and acl and have chipped a piece of cartilage off (confirmed with MRI).  I did this by landing badly on a trampoline.  I have been in a cylindrical leg cast now for 7 weeks which alone is driving me crazy, especially with not being able to look after my 2 year old daughter properly.  At my last appointment the consultant suggested I may have some chance of walking again without surgery but I don't feel he was very confident.  I am absolutely terrified of anything medical.  As soon as I enter the premises I am in tears.  I am finding this quite difficult to write now.  The thought of surgery makes me want to give up totally.  I am not one of lifes quitters and am an intelligent person although people often don't see me as that when I get so upset about what they see as a 'no brainer' situation.  I am due to have another appointment this Friday and am so worried that the consultant will say there is no hope without surgery.  Can anyone give me any hope that there is some chance I may walk again?  I would love to be able to drive again, swim again, and run my dog at agility again too but am starting to feel that without surgery my life is over, and for me, with surgery it is over too.

I realise this post sounds very negative, so I'm sorry.  If anyone has been in a similar situation I would be really interested in anything positive.

Thank you for reading.

Offline Lottiefox

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Re: Phobia of surgery/doctors
« Reply #1 on: July 05, 2011, 12:39:15 PM »
Hi Karen and welcome

Sorry you had to find us - it sounds like you've had a nasty knee injury. I am not sure anyone here can tell you whether you'll cope without surgery as we don't know your knee and we aren't medics....people do live without ACLs I know, but the knee loses a lot of its stability. Combined with an MCL rupture the knee is going to be pretty compromised and I guess the question is whether you feel that a knee without stability would actually be a safe thing to be getting around on. I am sure your surgeon will have more views on this, and I really hope you get good news.

I also don't like medics and surgery. I wouldn't say I am phobic but I backed out of foot surgery last year at the 11th hour in floods of tears. I finally had it done in April this year aas my life was being affected by the problem that needed doing. Can I ask if you know WHY or WHAT it is about the concept that scares you so much? I don't think you're being silly at all - a true phobia of surgery is as areal as a phobia of flying, dirt - you name it. There is often irrational anxieties underpinning the phobia that then become unbearable. Are you fearful of being asleep and out of control? pain? complications? recovery? Or just the whole thing sets you off? If it looks like you will need surgery (and to be honest, we never know when any of us may need something doing as an emergency..) I would say to try and seek out some proper psychological support to help you. (Yes, I'm an ologist....sorry....work mode...) You may never be anyone who breezes through surgeries without a care in the world but the right support and understanding could take you through it with some confidence. Finding control is the key to conquering a phobia of any kind, but it is very hard on your own.

I hope I haven't asked too many questions. Don't feel alone, we ALL understand knees on here and many of us have been very fearful of surgeries.

Where in the world are you?

Take care and keep us posted,

Lottie x
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline Karen10

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Re: Phobia of surgery/doctors
« Reply #2 on: July 05, 2011, 01:26:42 PM »
Thanks for your reply Lottie, it means a lot for someone to not find my fear silly.

I am in the UK and have been let down by the NHS.  I originally went into A&E when I injured my knee and after an x-ray was told I had dislocated my knee, that is had gone back in and I would probably never do it again.  The doctor said the kneecap was slightly misalligned but that would probably go back in without a problem over the next few days.  They put a plaster cast on and said I would get an appointment in the next week with a knee specialist for five minutes and that would be that.

At the next appointment a week later the doctor discussed nothing with me (didn't even tell me his name), asked some inane questions and said that for most people with my injury they would put a knee brace on but for me they were going to be really aggresive and put me in a full leg cast and send me to the knee surgeon.  As you may imagine my world fell apart as I'd thought I was going to get the plaster off, have a knee brace and some physio and all would be well.  I left not having a clue what was wrong with my knee and a doctor who thought it funny that I had a 2 year old daughter that I would be unable to care for.  I came away feeling very distressed and low and spent the next two weeks trying to obtain my notes from this visit.  When I got a verbal report via my gp there were quite a few inconsistencies between my treatment and what had been recorded and I still did not know what was suspected as being wrong with my knee.  My parents decided to pay for me to have a private MRI scan and consultation to find out what was wrong.  This was very traumatic for me but we did find out that I had ruptured my acl, mcl and chipped the cartilage.

I am scared of the whole thing really, the not being in control, feeling violated, the pain that I have not put myself in but someone else has, the inability to control my future.  I don't have a lot of trust in medics already as my Mum would be dead if it had been left to her gp and my Grandma would have died several years earlier if we had not paid privately for a re-op.  I also had to have some tests when I was about 12 years old and had to undress completely at quite a vulnerable age and be talked about, prodded etc with no consideration as to how it made me feel.  My parents used blackmail to get me to keep going for tests and I think this just made me more distant and untrusting.

I am hoping to start physio from this Friday but obviously am worried that the surgeon will say there is no hope without surgery.  I am just hoping that somewhere there may be some hope.

Thanks again for replying
Karen

Offline TwoBadKneesUSA

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Re: Phobia of surgery/doctors
« Reply #3 on: July 05, 2011, 03:09:25 PM »
From you short background there, I would say you have a reasonable reason to feel afraid.  You have been treated poorly by many medical folks.  After such I would not feel very trusting either.  Can the OS you saw privately see you under the NHS?  Sounds like he is not just pushing you off.  Maybe let the OS know you have had bad experiences with docs in general?  Good luck to you.

Milly
'83 lt knee scope
'88 lt knee LR
'89 rt knee LR (6 mos. after left)
'05 rt knee scope (clean up)
7/5/07 - scope, LR left, right clean
3/19/08 - LR failed, Supartz failed
http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=47974.0
8/21/08 - new OS apt
8/5/09 - TTT, LR, PFJR sched.

Offline amoler

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Re: Phobia of surgery/doctors
« Reply #4 on: July 05, 2011, 03:58:20 PM »
Karen10,  It sounds to me like you've had some awful drs. OS's can be real monumental inconsiderate morons sometimes. Lord knows, I've run into my fair share. Can you hunt around until you find one you like? or at least one who is willing to discuss options with you? I have sympathy for your fears. I have a vast drug allergy list and the two surgeries I've had in my life were no picnic. The knee surgery I had 20 years ago was done by a monumental obnoxious fool. These days i wouldn't let somebody like him near me with a knife. The other surgery I had was for major infertility issues- but that surgeon was the sweetest nicest most straight forward doc, and she answered a ton of my questions. There are docs liike that out that and there's a whole bunch of idiots too. Demand answers, demand options, and if they blow you off, switch drs.
'77- Rt knee menicus tear
'90 -2nd menscus tear
'91 -failed arthroscopy/partial menisectomy
patella dislocation 10/ 2010
Dx = grade 4 chondromalacia + synovitis + Meniscus tear + lax strained medial ligaments
Fall down the stairs 7/20/11 - mcl sprain + 2 meniscus tears

Offline Clarkey

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  • Neil TheElephant knee packed up carrying his trunk
Re: Phobia of surgery/doctors
« Reply #5 on: July 05, 2011, 05:32:19 PM »
Hi Karen,

Welcome to the bulletin board and are going through a difficult time in your life and it very normal to be afraid of possible surgery. Surgeons will only do surgery as a last resort if all other options have failed and the anaesthetics now a days have improved with less side effects. You can even have surgery these days awake and have an epidural if you afraid about being put to sleep.

Depending on the MRI report there may be no option but to have surgery and have found the right place for support ans advise. Its does not help when you go to the pre op clinic and tell you all the things that could go wrong during the surgery. There always a risk with any type of surgery and the majority of patients have no lasting affects on their health.

I was also very afraid about my knee surgery back in November 2009 as I never had surgery before so did not know what it was going to be like. On the day of the surgery the theatre staff where fantastic and made me feel at ease just before they put me to sleep. I was allowed to hold one of the nurses hand while they gave me the anaesthetic and fell into a nice deep sleep and found it a nice feeling just before falling asleep and other people say the same thing.

I woke up with a little bit of a sore throat and headache and was allowed back home after a couple of hours. Most knee surgery's are day cases and are mostly allowed back home the same day depending on how much you had done to your knee and if you are having a bad reaction to the general anaesthetic.

I would suggest that you see one of the recommended list of knee surgeons on KG as the Owner of KG only list surgeons with a good record. It important that you get on and like you knee surgeon and thereis a link below of knee surgeons across the UK.

 (might have 2 click twice to get the link!)

http://www.kneeguru.co.uk/KNEEnotes/node/396

Nick  :) {2011} :)
RK: PFPS, Arthrofibrosis, Tendinopathy, Five cortisone injections
16/01/18 Anterior interval release, distal patella excision, lateral meniscal repair
18/07/14 Anterior interval release  
16/11/09 Medial plica excision, fat pad trimming

Offline Lottiefox

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Re: Phobia of surgery/doctors
« Reply #6 on: July 05, 2011, 05:51:10 PM »
Hi Karen

I fully understand your fears and your reluctance. I think many of us on here share a healthy scepticism about surgery - surgeons are sometimes so blase about it but that is what they DO and it isn't them that is being operated on! All I would say is that Nick is right in saying that many many people are scared of surgery but by seeking out the right people you can get through it. Sounds like you've met with some complete idiots who missed out the empathy and communication elements of their med school training. You said you got a private MRI, do you have any way of seeing a private surgeon who could then consider putting you onto his NHS list for treatment? (Even if this is not surgical). In some ways ligament repairs are the most reliable types of knee surgery, although of course any form of surgery has risks.

 I too have had some horrible complications after my foot surgery but slowly I am getting back to full strength - it kind of vindicated my view of surgery as being a last resort but for me it had to be done. I had no joint cartilage left in my big toe and loose bone spurs - every step was painful and at 42 and being very active (I cannot sit still!) I had to bite the bullet. I was lucky to be able to fund the op, and found a surgeon who I would trust with my life as he has been nothing short of outstanding. His skill at DOING the op (it was tricky, many things he had to sort out and lots of hardware in the joint now) and his skill at detecting a very unusual complication at 2 weeks post op has saved me from dire consequences. He is not a "cuddly" surgeon but he personable, dedicated, treats you like an equal and answers questions. I'd trust him with anything medical. You need a similar knee person if you decide to bite the bullet. They do exist and won't belittle your fears. And I'd agree with Milly, your fears have very real roots and justifications. Just don't let the fears stop you living the life you want, there are always ways around things - they are just sometimes hard to see and find.

Physio may well help. Give it some time. Knees are SLOW to improve, so don't panic if things feel horrible and strange and you can't see improvements in days. Its a weeks thing. Can I ask which part of the UK you are in? There are many knee people on here who have seen good NHS knee surgeons and who may be able to help.

Good luck and stay strong,

Lottie x
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline hinata42691

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Re: Phobia of surgery/doctors
« Reply #7 on: July 05, 2011, 06:27:35 PM »
Your fear of surgery is totally normal. I'm currently recovering from mine and I can't even begin to say how terrified I was going into it and how often I thought about backing out. I've had issues with my left knee for almost ten years and I've long lost track of how many doctors I saw (mainly physician's assistants) who told me there was nothing wrong and that I was hallucinating pain. All they ever looked for on me were obvious breaks when it was most likely a muscular issue in the first place. Turns out I've probably been dealing with a torn MCL for all those years, have had my knee dislocate or partially dislocate countless times, have been on crutches more times than I can count (same for PT), and ended up with a stress fracture in my shin from not treating the problem in the first place. Finally about four years ago I found a physician's assistant who didn't think I was crazy and ended up sending me to a bone specialist (she's the one who diagnosed the stress fracture). In December I tore my MCL badly and ended up going to the surgeon who operated on my mom's rotator cuff injury when I was in elementary school. He's really nice and if I have questions he'll answer them. He understands that surgery is scary and hard and even though he likes doing surgeries he wasn't going to push the option on me. I went through almost six months of physical therapy first before I accepted that it wasn't really helping (my kneecap was trying to dislocate at least five times a day). At my six month appointment, we talked about surgery again and while I still didn't want to have surgery I ended up deciding to go for it. If the surgery can help me walk again and go back to ballet without fearing that every step I take could kill my knee it will all have been worth it. I'm still recovering and I can't say it's been easy but I'm managing to get through it by imagining all the things I'll be able to do once I have a good knee again. All I can say at this point is to find a surgeon who is willing to listen, willing to do extra research to help you out, and can answer any question you may have. I know for me it made all the difference in the world. Also, knowing that he is one of the best surgeons in my area and that my mom came out just fine helped too. Good luck with everything and try to look past the recovery (surgical or non-surgical) to the positive result. You can get through any recovery with the right people around you and a positive outlook (even if at times the thinking positive part feels impossible).

Offline Karen10

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Re: Phobia of surgery/doctors
« Reply #8 on: July 05, 2011, 06:35:35 PM »
Thank you for all your help and encouragement.  It has made me feel a little less like I'm on my own.  

Let's hope I start getting some better news as the thought of going under or having an epidural are just not things I feel I can cope with.  The thought of having any sort of needle in my arm/hand makes me feel physically sick.  I think they would end up sedating me which again I'm not sure I could cope with either.

I'm not sure I can return to the nhs now.  The surgeon I saw privately was trying to reduce my costs by getting me to go to his nhs surgery for things like re-plastering my leg - well the response from the plaster room was less than welcoming and I was made to feel like I was the dirt on the bottom of their shoe because I'd paid to have anything done privately.  I think I would worry that they would mess things up on purpose.

I too am an active person and find it difficult to sit still.  This is currently making me feel very depressed.  Even if I did manage to go through with surgery I'm not sure I could get through the after op issues with so much time out, pain etc.  I have already nearly had a nervous breakdown in my life from high pressure work stresses whereby I seriously considered jumping under a train.  I'm a lot better now but when things get stressful I still find it difficult to cope (as if my brain will explode).  Maybe I'm just a lost cause!!

I will see how things go on Friday and let you know if things are looking any brighter either physically or in my mind.

Many thanks again for trying to make me feel better.  I've had more support from you guys than from my husband (he is doing a lot of physical tasks to help but not much support emotionally)

TC

Karen
ps I'm near Bournemouth on the South Coast.

Offline Lottiefox

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Re: Phobia of surgery/doctors
« Reply #9 on: July 05, 2011, 09:38:54 PM »
Ahhhhhhhhhhh Sunny Bournemouth  8)   I have sent you a PM. It should register in your Private Messages section.  :)

Good luck on Friday, keep us posted....

Lottie x
Bilateral patella OA since 2009, no surgeries.
Euflexxa working well x3 to current
Right forefoot CRPS post fusion surgery 2011
Refusing to let the ailing parts stop me....

Offline bd1

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Re: Phobia of surgery/doctors
« Reply #10 on: July 06, 2011, 05:32:52 AM »
Hi karen,
So sorry you've injured your knee.
It's definately normal to have the fear of surgery, I don't think anyone of us on here has welcomed it into thier lives with open arms!!
I had the same injury back in 99
Acl,mcl & torn cartledge, They put me in a cast for 6 weeks to let my mcl heal
on it's own. & the os said we'd see how the acl was, I had 4 months of physio afterwards but unfortunately my acl was to unstable & combined with the cart' tear my knee would give way so surgery was the only option for me. The thought of it used to make me feel sick & i'd start to have panic attacks. I've got to say though they where fantastic on the day of the op. I was able to return to playing sports 6 months later,
which without surgery was unthinkable, I was also struggling with everyday life before surgery & as much as I feared surgery I couldn't carry on with my life without it. & as nick said anesthectic has improved 10 fold, plus the understanding of this type of injury has movf forward a lot sincei had my 1st op 12yrs ago.
Hope this helps!
Good luck fri BD
1999 acl mcl recon'
05 knee dilocation acl mcl lcl pcl recon's 80% lateral meniscus removal
06 plc recon' lcl tighened up
Chronic lcl problems(ongoing)
reinjured dec10 mcl grade 2
hamstring tear

Offline Snowy

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Re: Phobia of surgery/doctors
« Reply #11 on: July 06, 2011, 07:59:58 AM »
Hey Karen,

So sorry to hear about your situation. :( It hits close to home for me because a year ago I was in the exact same place - my first ever surgery was looming and having never had as much as a general anaesthetic before, I was terrified. I honestly don't know whether I was more afraid of the surgery itself or being put under. It's not unreasonable to be frightened - these are big things, and if you haven't experienced them before then there's a huge fear of the unknown attached as well. I simply had no idea what it would be like to go through surgery, but the one thing I can now say with confidence is that the anticipation (if you can call it that) is so much worse than the actual experience.

The thing you have to remember is that your imagination has no boundaries. Before the surgery, you fear everything that might go wrong - and things that almost certainly won't - at every single stage. Once it's happened, you just get on with it - one step, and then the next, and the next. Your imagination throws the whole picture at you - present and future - which is a very daunting thing. The reality is that you have the surgery, and things shrink down to a micro level; you get so focused on the individual milestones (taking weight on the bad leg; having your first shower; walking without the crutches) that the bigger picture takes a back seat.

Remember that for the injuries you have, surgery is elective. Read up about the pros and cons of living without an ACL, keep a close eye on how your knee recovers, and make your own choices about what needs to happen next. If you do find that your knee is chronically unstable then ACL reconstruction may be inevitable, but take it from someone who's been through it - it's a slow, frustrating recovery, but with persistence it's well worth it. My reconstructed knee now consistently tests stronger than the uninjured knee when it's checked out by doctors, and I have no activity restrictions at all. The surgery experience wasn't fun, but I had a surgeon I trusted and great medical staff who made the experience as comfortable as it could be for myself and my partner. Overall, I'd say that I would be less afraid of surgery in the future having been through this. There's no doubt that it's tough, but it won't be anywhere near as bad as what your imagination is throwing at you right now.

Take care, and good luck! Will be thinking of you.

Mar 11: R Biceps femoris tear (skiing)
Jul 10: ACLr (hamstring autograft)
Mar 10: L ACL rupture (skiing)
Feb 06: L partial ACL tear (kickboxing)
Dec 03: R bone edema (motorbike)
Jan 01: R patellar chip (motorbike)
May 93: R ACL sprain (hockey)
Ongoing: bilateral PFS and OA

Offline emmi

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Re: Phobia of surgery/doctors
« Reply #12 on: July 06, 2011, 04:23:41 PM »
Hi Karen

I'm also new to the site an very near to you geographically as I'm in Worthing.

I'm also finding the nhs a bit unhelpful at the moment.

I've dislocated my knees several times each and I am very limited at sports and activity but I am determind to put this right somehow because I enjoy execising.  I am due to have an LR at the end of this month through the nhs but I am not convinced this is the right thing to do.

I will go to the London Knee clinic tomorrow for a private consultation to get a second opinion but I will stuggle to pay for any further private treatment.

Before I discovered this site I also felt as if I had no control over what was being offered to me but now I feel as if there are more choices.  It does help to know that other people are facing similar problems or that they can jut offer verbal/written support.

I'm sorry I can't offer much in the way of advice but I can say that I feel sorry that you are feeling low at the moment.  I think the only thing for me will be to trust my gut feeling after collating as much info as possible.

Hope you feel more positive soon.

Emmi

Offline Karen10

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Re: Phobia of surgery/doctors
« Reply #13 on: July 08, 2011, 02:44:43 PM »
Hello,

To keep those of you who supported me this week up to date, I had my appointment today.  I had my plaster removed and was expecting a knee brace and some physio advice.  Well, I had my plaster removed and that was it.  The consultant said that my medial collateral ligament had repaired adequately which is some good news.  It is now a case of going to physio to see how much stability I can gain over the next 3+ months to see how much of a problem not having an acl may be.

I'm trying to feel a little bit more confident although still am worried about the future.  Just got to get over this weekend now with now support on my knee at all before my first physio appointment on Monday.

Thank you again for all your support, it really did help me today, I did manage to keep it together a little more.  I may be back as things progress.

Karen