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Offline maria1985

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surgeons,can anyone help me?
« on: October 10, 2007, 08:30:20 PM »
hi
its been a while since my last post, and nothing much has changed since then. i saw a specillist in sicily whilst out there on my hols but have decided that for now i will carry on seeking help in the uk as it will be difficult travellin back and forward. i decided to go private here(uk) and had my app yesterday, which has basically confused  me as to what im goin to do now,he wasnt really helpful and said i should see my current surgeon privatly rather than on the NHS(so i won't have to keep seeing the registrars), which i don't see the point in doing as he will only tell me the same thing and also why should i pay to see the same dr i am already seeing on the NHS. Also i was told by him that i have been a victim of the NHS system and that my problem has gone on far too long,(like i needed telling that).
i was wondering if anyone had any advice on what i should do next as i am really running out of ideas.


stressing out HELP!!!!!

MARIA.xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline Nettan

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Re: surgeons,can anyone help me?
« Reply #1 on: October 10, 2007, 08:41:23 PM »
So he had nothing to tell you ? A question...has your pain been evaluated by pain specialists ?
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline maria1985

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Re: surgeons,can anyone help me?
« Reply #2 on: October 10, 2007, 08:47:20 PM »
hi nettam thanks for your fast response, i think i need all the help i can get.
the answer to your question would have to be no, i have seen a pain specialist who suggested i go pain management to spk to a phycologist which i refused because everyone is suggesting the pain is in my head including my consultant. i'm meant to be seeing him in november but that's if he turns up to the app if not i'll be seeing the registrar again. i seem to be going round in circles.

maria.xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline Nettan

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Re: surgeons,can anyone help me?
« Reply #3 on: October 10, 2007, 08:53:22 PM »
You should try get referal to painmanagement team and make them check what kind of pain you have if that is not sorted out.
I checked around at some of your earlier posts to learn more about your problems, though I couldn't read up on everyone of them.
A question..do you have meds allergy, if I read right ? Have you tried things like TENS unit or accupunture ?
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline maria1985

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Re: surgeons,can anyone help me?
« Reply #4 on: October 10, 2007, 09:05:31 PM »
i don't have any allegies to meds but i seen to get really bad side effects to the medication and they don't help me with the pain at all so no one is prescribing anything to me, i have just been left to put up with the pain and am getting no where with the hospitals. i have got a TENS  unit but once again failed to help me with the pain and accupunture is out the question as i have a very bad phobia of needles. i have tryed a number of massages including the chinese herbal things but they did nothing. the pain management i was offered meant i would have to stay in hospital for 3 weeks but the last time i was in hospital for intensive physio i met a few people who were having the pain management and not one of them had a positive outcome with it, i know i shouldn't compare my situation with theirs but i just can't help it as i have already been told that the pain could possibly be in my head.
my surgeon has already admitted that they don't no what else to do, so now i think that they aren't really bothering with me.

maria.xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline Nettan

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Re: surgeons,can anyone help me?
« Reply #5 on: October 10, 2007, 09:13:39 PM »
Maria, really go get this pain management you have been offered. Maybe then they also could see what your painproblem really is.
I have been in that kind of pain management and that have helped me so much.
So I don't believe really that they don't care..you need to try everything before saying you don't get help. Everything can't be solved with surgery after surgery.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline maria1985

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Re: surgeons,can anyone help me?
« Reply #6 on: October 11, 2007, 07:50:50 PM »
hi nettan
i understand what you saying bout trying everything but i haven't had any contact with my surgeon for a year now which is why
i feel i'm getting no help at all. what i don't understand is how talking to a phycologist is going to help me deal with the pain i'm in.

maria.xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline Nettan

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Re: surgeons,can anyone help me?
« Reply #7 on: October 11, 2007, 08:47:51 PM »
Maria, then how do you know that you can't be helped ? And going for this pain management is definately not only seing a psycologhist.
Get yourself educated in what this will mean for you and also get going. I am convinced that treatment in a pain management clinic would be a hit for you.
Surgery 6 times left knee torn meniscus, RSDS,chondromalacia, nervdamage cause constant nervpain,chronic inflamm.
Spinaldamage wheeler 100%.
Right knee damaged aug-06, use brace surgery 4/9-07.LCL tear.

Offline tanyap

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Re: surgeons,can anyone help me?
« Reply #8 on: October 12, 2007, 10:26:21 AM »
Hi Maria,
I dont know your history so feel free to correct me, but you are saying that you have been recommended to have a pain management appointment and speak to a psychologist but you dont want to do that?
Do you not want to do it because you feel it will confirm that the pain is in your head and you feel it isnt?
Or because other people did not have a good outcome?
Or other reasons?

I think that you should do it. Its very important to exhaust EVERY avenue in the quest for answers. You were willing to try chinese herbal things - why not try pain management?

You say your surgeon has admitted he doesnt know what else to do - I doubt he is gonna think very hard about something new to try until everything else he offers is tried. You have to do whatever the surgeon says, realistically he wont pick up a knife until every single other avenue has been explored.

In the search for answers we sometimes have to try things that seem to us at first that they are not worth it. BUt you wont know if its worth it til you try it!!

What do you think?
Tanya

1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline Silkncardcrafts

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Re: surgeons,can anyone help me?
« Reply #9 on: October 12, 2007, 10:34:30 AM »
Hi Maria,

I would definitely look at going to see a psychologist. It doesn't mean it's in your head. You need to look at all avenues. I've certainly done that in my situation. I've tried physio, clinical pilates, counselling and surgery. Basically down to whether I have more surgery, just managing it and counselling. Have you considered going to see a sports physician/doctor ? They generally have a much better understanding of these problems.

My knee surgeon has suggested I work closely with my sports physician and sports psychologist. My knee surgeon knows how hard it's been and my sports psychologist has given me a pain management plan and given me some strategies to deal with my patella instability which has been going on for more than 13 years now. I am about to see my knee surgeon to discuss the next steps.

Hope this helps.  :D
11/1996 - RK LR
07/1997 - LK LR
11/1998 - LK MPFL Reco
12/2005 - RK LR Repair
07/2006 - LK MPFL Repair
11/2006 - LK LR Repair
22/05/08 - LK Trochleoplasty
11/02/10 - RK Trochleoplasty
07/03/11 - RK Chrondroplasty

Offline kathat

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Re: surgeons,can anyone help me?
« Reply #10 on: October 12, 2007, 03:26:55 PM »
Hi Maria,
I would definitely try the pain management option, including the psychologist. I work in a rehab setting (orthopedic, spinal, stroke, etc) and a psychologist is part of the rehab "squadron" that also includes OTs, PTs, speech therapists, doctors, nurses, dieticians and more. A psychologist helps by giving support, lending an ear, teaching coping strategies, and more. It doesn't mean anyone thinks the pain is in your head. I know through experience though that if you let pain get on top of you then you begin to get depressed and the pain worsens and things spiral downwards. Mood has a lot to do with the amount of pain we feel and a psychologist can be a great help in helping break a downwards spiral. If you see a psychologist in addition to a pain management specialist then you have a much better chance of pain control, so please don't chuck the idea out the window before you've tried it. Good luck and keep us posted.
Kathy.
PS - Remember when you are having a down day that you have all of us here for support!

Offline maria1985

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Re: surgeons,can anyone help me?
« Reply #11 on: October 12, 2007, 09:40:33 PM »
thanks to everyone for your replies.
i phoned the hospital today and have an app with my consultant on 14th november i'm going to speak to him and see what he says and where abouts i'm at with all this business.
i try not to let the pain get to me in the sense that i try to ignore it, which obviously doesn't work. i know that the pain isn't in my head because of the fact that my knee is constantly giving way and is swollen, so surely if the pain was in my head then why would it be like that. i think that it can be soo easy to fob it of as being more of  a mental issue than a physical one, specially as no one has been able to confirm the real problem.
i'm just confused about what to do and where i'm heading with all this.

maria.xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline tanyap

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Re: surgeons,can anyone help me?
« Reply #12 on: October 13, 2007, 12:00:23 PM »
Hi Maria,
Im going to tell you a little story - you can take what you want from it.

Im working on rebuilding my leg muscles specifically VMO to try and stabilise my knee. For the past 2 years my quads and VMO have not been firing automatically nor are they strong enough to do their job. As I result I dislocate my knee frequently. I can expect that to keep happening until the rehab is much further along. For 1.5 years I was prescribed physio exercises that did not target the correct areas - I only started with a new physio in June - there has been improvement in muscle bulk, and function since then. There is a long way to go.
As things stand now I 'could' dislocate with each step I take - I dont because I walk slowly, I concentrate on trying to stabilise, I pull hard to try and contract the weak muscles when I walk etc...

I FEEL unstable all the time. And I will do until these darn muscles start working automatically.

However. I feel more stable within my own house. I have very rarely dislocated at home. I can move around my own home at an ordinary speed and even move a little bit quickly to grab something off the cooker or get to a ringing phone.

Outside the home the feeling of instability increases dramatically. Sometimes its so bad that I literally freeze up and cant engage my leg muscles at all.

Theres no physical explanation for this. Why can I walk the length of my house in relative comfort but the same distance walk outside (from my front door to the car for example) is incredibly difficult for me??

Its because there is a psychological side to a weak joint. Confidence plays a part. I feel less confident outside - for a number of reasons. Im afraid Ill dislocate and be in the middle of a big spacious area and have no where to sit down. Im afraid other people will see me dislocating and Ill be embarrassed. My brain has other things to contend with outside like processing the information of space, perspective, unevenness of the ground etc...that I dont have to contend with in the house.

All in all, for me, dealing with the psychological aspect of this knee is actually harder than dealing with the physical limitations.

It took me a long time to accept that there was a 'mental' part to all this. A very nice physiotherapist that I had before told me that 'subjective weakness or instability' was an extremely common feature of lower leg rehab. Its in the mind. Some of it is a physical mental issue like the brain having to process more info outside, some of it is emotional with the brain contending with a lack of confidence etc...

The longer a knee problem goes on the bigger impact it has mentally. The brain will fire many many more neurons in response to one incident of 'giving way' than it will to 100s of incidences of not giving way. So the giving way has a much bigger impact in the mind.

A lot of OS's and even PTs dont discuss this with patients, because in the 'ordinary' run of things people have an injury, rehab the area, and get on with things. The mental side of it is only present for a short period of time, and as the joint becomes strong it goes away by itself. Discussing it with someone who is barely aware of it can cause them to dwell on it perhaps unnecessarily.

For someone who has had ongoing problems this might not be the case, the mental aspect of things is going on longer, is more deeply embedded in the brain and can start causing problems in its own right.

A negative state of mind can make pain feel worse. The pain is quite probably the same, but for the person who has just won the national lottery they forget about the pain for a while - its still there, their brain is just too busy with their immediate exhilaration to register it.

For all of the above reasons its a good idea to investigate the mental side of a knee problem with a professional.

Id LOVE if my medical people offered me a psychologist. I read your first posts of this thread and thought you were lucky to be offered that option.

I understand that it can be frustrating to not have an answer. I spent a long time before I found an OS who explained my knee problems to me and put me on the right track for recovery. I dont think that you should give up the search for answers, but I think that that search can be complemented by taking advantage of pain management, psychologist, and anything else that is offered. Each avenue of investigation is just one more possible cause that can be knocked off the list to find the answers. The more professionals that see you knee and talk to you about your symptoms the higer chance you have of finding answers.

I think in this area of life, as in all areas of life, an open mind can take you a long way.
Tanya

1986 - recurrent dislocations of right patella began
1988 - Modified Hauser Procedure
1991 - dislocations started again
2005 to 2007 - 150 dislocations in 2 years - OUCH!!!
June 2007 - new OS, new physio
Oct 2007 - VMO woke up
Mar 2008 - big quads, still dislocating
Apr 2008 - next OS app

Offline maria1985

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Re: surgeons,can anyone help me?
« Reply #13 on: October 13, 2007, 10:41:19 PM »
hi tanya
thanks for your reply it was actually really helpful reading what you have written.
i can understand why its good to talk to the phycologist but one of the things that does put me of is breaking down in front of them, i have had problems with my knee for 12 years(since the age of 10) and over the years i have basically just been trying to live with the pain specially as it seems no one knows the real course of it, i try to block out the pain and when people ask "hows the knee" i lie and say its fine even though they know i'm in agony. i hate the idea of speaking to a phycologist as i know that i will just start crying and won't beable to stop as my last few app at the hospital i have been getting quite teary but manage to control myself, i know in myself that all this is affecting me mentally because normally i can say what i have to at the app without bursting into tears, whereas the past year or so its not like that, i find myself crying in front of my friends when its really bad that i'm vomiting from the pain.  i hate all this showing my emotions when i'm in loads of pain because i want to be treated normal and i don't want people to think i'm weak and i'm going to break down over every little thing, i try to keep up with my friends socially even though i know i will be suffering really bad after.
i'm now getting to the stage where i'm thinking that after 12 years of hospitals and app shall i just forget it all and learn to live with it!!

maria.xx
chronic knee pain since 10 years old.
lateral release in 2000
goldwaithes in 2002
2 weeks intensive physio in 2005
nowhere near to finding the course of the problem.

Offline Berta

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Re: surgeons,can anyone help me?
« Reply #14 on: October 14, 2007, 08:29:33 AM »
Hey Maria, have you ever heard the saying 'don't sweat the small stuff'
Please do not be put off of going to the phycologist because your scared of 'breaking down', thats actualy the starting point. Take it from one who knows, phsycologists have a never ending supply of free tissues, and it's actually a great place to go and braekdown. No well meaning friends either trying to sympathise, or trying to get you to snap out of it, but a fully trained person who's job it is to help you through those floods of tears, and then help ypu to rebuild and see things differently. In fact this is exactly why you, and about 90% of us SHOULD have a phsycologisy on tap, it means that your tears and rantings can become part of something constructive, not destructive.

Go for it, having a good cry in the office usually means that you can then enjoy being with friends, been there, done that, had great results

Denny
6th Dec 2007 arthoscropy, major debridement and meniscus trimmed
Jan 08 2008 Arthritis grade 2/3 told to wait until TKR needed.
August 2010 Left knee arthroscopy