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Author Topic: When is it OK to give up?  (Read 222952 times)

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Offline _Annie_

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Re: When is it OK to give up?
« Reply #1140 on: December 18, 2008, 11:42:58 PM »
Wow, Laura.

I found this forum googling "patellar tendonitis" in search of something that would help my knee pain (cause unknown...could be runner's knee, could be patellar tendonitis, but 6 months of PT hasn't helped) subside so I could get back to running.  And then I stumbled upon your saga...and spent the afternoon reading all 76 pages of it.

You are phenomenally brave.  I simply cannot imagine going through two years of the kind of constant pain, worry, and frustration that you faced.  And I speak not only of your knee, of course, but your work and personal problems as well.  It seems like things kept going wrong for you---one thing after another.  And throughout it all, you managed to keep a positive attitude and an admirable pragmatic approach to dealing with your problems.  What courage!

I wish you (and your son!) absolutely nothing but the best.

Annie
Arlington, Virginia, USA

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1141 on: January 01, 2009, 10:51:41 AM »
Hi Annie,

Thanks for your support. I don't really think I'm any braver than the next person and although generally positive, there have been times when I've been very negative too.

There are many people hee who are in constant pain, particularly those also with RSD. Everyone's problems are as bad for them as mine are to me and I think to a large extent, how we deal with things is important.

ANyway, my Son is with his father today so I'm off to do some housework.

Hope you had a great Christmas and Happy New Year.

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Clarkey

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Re: When is it OK to give up?
« Reply #1142 on: January 16, 2009, 03:40:10 PM »
Hi Laura,

Correct me if I am wrong but are you going for a consultation with Dr Green at the Birmingham ROH. If you have read my fat pad thread will see that the OS I saw today decided not to give me a steroid injection into the fat pad or the patella tendon after all so back to sqaure one and well cheesed of about it.

The reason why I am asking you if you have an appointment with Dr Green is because I heard he ment to be very good and one of the top OS's in the midlands area. I am thinking about seeing him as well as I think he will do something about my right knee. Many GK members agree with me that I am now at a stage where I should be seeing one of the top OS's at ROH.

Nick :) {2009} :) 
« Last Edit: January 16, 2009, 04:00:28 PM by Clarkey »
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 Doc79316

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Re: When is it OK to give up?
« Reply #1143 on: January 18, 2009, 10:13:32 AM »
Hi All,

NIck - Sorry to hear you didn't get yoru injection. Were you given any other options? A follow up appointment? ANy clinical or diagnostic testing done to see if anything else has gone wrong with your knee?

Mr. Marcus Green is certainly one of the best OS's around, aprticularly in the Midlands but he works only 1/2 days a week at the ROH. I didn't see hiom because I'd have had to wait over 3 months through tthe choose and book system.

On Friday I saw Mr. Ashraf. I was referred by my GP through the choose and book system I had to have more x rays and although it was a long wait (over 2 hours), it was worth it. He's booked me in for a scan (MRI) and is requesting my medial notes from Solihull Hospital. This was all done whilst I was there so I was qutie surprised that it happened so quickly.
He mentioned a full TKR, partly because of the ongoing problems but also because of the arthritis I now have and because my kneecap is so worn down. I'm not exactly keen on the concept of a full TKR but if it solves the problem (or at least part of it) then it's worth having it done.

If I were you, I'd get onto my GP and get referred to the ROH. Mr. Green is the best OS there re knees but MR. Ashraf is fantastic also and very quickk of the mark to get the ball rolling.

Let me know how you get on.

Take care,

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline UK Girl !

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Re: When is it OK to give up?
« Reply #1144 on: January 18, 2009, 04:44:39 PM »
Hi Laura!

Good to see you are getting some progress !

I love my TKR - totally liberating ! The thing you need to find out is how much it would effect your rsd - cant remember the name - but would it make it worse?


anje x
1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Clarkey

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Re: When is it OK to give up?
« Reply #1145 on: January 19, 2009, 03:57:20 PM »
Hi Laura,

Sorry to hear you may need a TKR at such a young age but can only be a good thing as it will stop the knee pain you keep getting and improve your mobilty.

Its sounds like a good idea to go to my GP which i will do and ask for a referral to Dr Green but may have to wait a while to see him which is ok. I been told on my thread by other members to see Dr Green at the Priory Hospital in Edgbaston for a private consultation but and if I need a scope have it done on the NHS at the ROH but are you allowed to do this see him private and get treated at the ROH?

Nick :) {2009} :)
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 UK Girl !

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Re: When is it OK to give up?
« Reply #1146 on: January 19, 2009, 08:39:17 PM »
duh - did i mean crps? or are they much the same thing?
1978 - ruptured acl and all cartalidge removed.
several debridements over years
TKR 10TH JULY 2006 http://www.kneeguru.co.uk/KNEEtalk/index.php?topic=28257.0  Aug 07 patellar maltracking - more physio! Still pain - but so much better !
BIOMET AGC  TKR  (with 10 yr warranty !)

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1147 on: January 20, 2009, 05:21:50 AM »
Hi All,

Anje - RSD and CRPS are the same thing but the preferred name for the condition is (at least for my doctors) is CRPS.
I've been told by the pain specialist who has given up and discharged me that ANY more surgery, regardless of how major it is, will make the pain much worze. To be honest, I can't imagine it getting any worse than it is sometimes but I suppose everyone is different.
Fortunately, my OS knows a lot about RSD/CRPS andso long as he is happy to operate, then I know he's taken it into account before he starts (assuming it's my OS from Solihull). If Mr. Asraf gets to fix my knee first, this is all in my notes but I'm sure I'll get the chance to tal t ohim properly beforehand.

Nick - It's possible to see any OS privately just to get th einitial apppointment done and then to see them on the NHS to get the surgery done. Obviously it would bring forward the appointment time or the initial consultation if you saw Mr. Green privately, but if you were to have surgery on the NHS, yo'd still go ontothe waiting list (which is qwuite short at the ROH so not so bad).
If you're able to afford the £150 or so for the first consultation, then it's well worth it. But please bear in mind that you'll get the same amount of time with Mr. Green as is you were seeing him on the NHS (5 minutes if you're lucky). It's your decision. Personally, I'd do the whole lot on the NHS. It will probably be a few weeks before you see Mr. Green privtely and 2/3 months on the NHS. It depends on how long you think you can wait - although you've waited so long already.
Good luck with whatever you dcide to do.

Take care,

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Clarkey

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Re: When is it OK to give up?
« Reply #1148 on: January 20, 2009, 04:24:07 PM »
Hi Laura,

I have decided to wait it out on the NHS as I said before sometimes my knee pain is not too bad as it been ok for the last 4 weeks but happened before been ok for a few weeks then pain comes back. I waited 15 months already and now getting to the busy part of my job, Spring is not far away and and we will start cutting grass daily again with one less greenstaff as the club cant afford another staff member due to the credit crunch with less members joining. Instead of 6 staff we will only have 5 and we need all the manpower we can get from mid March till the end of September.

I dont mind waiting it out till the autumn if Dr Green decided I needed a scope and would like to see him if possible will see my GP at 5pm on Thursday about my AS medication and ask him if he reccommends Dr Green. I also can see a GP who a member of my local cricket club if he can suggest a good OS that deals with fat pad problems.

I know you said before health comes before work but IF I needed a scope in the end would prefer time off work from October to the end of February as we less busy and my boss will be less annoyed with me.

You said you had to wait over 3 months to see Dr Green but decided to see Mr. Ashraf as he could see you quicker. I have to see my PT Alexander 1st before I can see Mr Green not Dr as I been told the weekend as they dont like to be called Dr but Mr so will now call them Mr. I might see Alexander in March and by the time I see Mr Green, that is if Alexander agree I would see him June/July and if he thinks I need a scope would be towards end of september ealry october.

Thanks again for the advise and hope you having a less painful day and glad you found an understanding OS who willing to treat your knee problems.

Nick :) {2009} :)

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 Doc79316

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Re: When is it OK to give up?
« Reply #1149 on: January 20, 2009, 10:38:13 PM »
Nick,

Where on earth are you getting your info from? If you see Mr. Green (or any other OS for that matter at the ROH) there is at least a 4 month waitnig list for scopes because they're not seenas a priority. If you do't see anyone until Maybe July, it will be November at the earliest before you get surgery. Furthermore, you're still talking about arranging time off work in the winter. If your knee problems were that painful r causing that much of a problem to you, There's no way you'd be timing surgery to coincide quiet times at work. Y0u'd want it done asa p. So ultimately bythe tie you get a scope (that hasn't yet been decided anyway), yo'l have bene waiting almost 2 years? Why di dyou have to wait 15 months to begin with? Did you follow anythign up about that?

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Clarkey

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Re: When is it OK to give up?
« Reply #1150 on: January 22, 2009, 07:56:10 PM »
Hi Laura,

I saw my GP today and he will write a letter to alexander if I could see Mr Green. I not had much knee pain for around 4 weeks as I have not done much manual labour until this week but have been doing some drainage work on the golf course shifting soil and gravel and my right knee hurting more again on the lateral side again and feel it catching and pinching followed by a sharp pain. I know its too ealry to say I may need a scope but to me this catching inside the knee not getting better and a good look inside the knee is the next option.

You are right ignore my boss he a asshole thinking the knee problems in my head and thats the main reason why I would want a scope done in the winter as I am worried he will have a go at me. I agree its best to get knee sorted sooner rather then later and IF I needed a scope done in the summer accept it as leaving a knee injury too long can be harmful and make the knee problem worse.

My pain tollerance is failry high and just learn to put up with the sharp pain I keep getting but I know its wrong to think this way. If you are an OS and see a patient who had fell heavy onto the pavement in october 07 and cant run since and walks with a limp and gets regular knee pain on the lateral side and can feel catching and pinching inside the knee there no other option but to scope the knee. How bad does the knee have to be to have a scope. I want to go jogging again as I miss it and disagree when people tell me how do you know you need a scope as you may not need to have one.

Even Alexander said a scope is the next option if I dont have injection or its does not work and he told me that a senior OS suggested it. Sorry if you think I had a moan just wanted to show my feelings.

Nick :) {2009} :)
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 Doc79316

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Re: When is it OK to give up?
« Reply #1151 on: January 22, 2009, 10:34:21 PM »
Hi Nick,

The choice to see a certain OS is your decision and a choice to be made betwen you and your GP. You don't have to see your PT first and please bear in mind that he's not an expert in knees or knee surgery - that's why he's a PT and not an OS. It's 2 separate disciplines.

Also, in my experience knee pain increases in the winter no doubt as a result of the colder weather. If you're considering surgery of any sort it's better to have it done during the summer months when you can recover more comfortably at home.

I don't mind you moaning at all but Alexander is not an authority on knees and he's giving youa lot of nkfo - some f which may be either wrong or not relevant to your case. There's no way you can know for sure if you need a scope. You say tthat Alexander said a senior OS suggested it. Have you seen this senior OS? Has it been suggested to you personally by this senior OS?

Bear in mind ALL knee problems shoudl be dealt with on their merits and all patients shoul dbe considered individual cases with their own specific needs. it shouldn't e a case of "well, you've had this done so now we have to do that before considering anything else". it may be that a scope will get you nowhere but a different surgery may help you. Alexander is certainly not in a position to advise you.

I think you should wait until you see your OS - whjether that's someone you've already seen, Mr. Green at the ROH or someone else. Explain EVERYTHING that's happened and tell them that Alexander has said certain things to you. At the ROH they will explain things properly to you and will tell you why something will or won't work. SO please, for you own sake, listen to what the senior, experienced OS you're going to see will tell you rather than taking as gospel the speculation of a PT.

Take care,

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Clarkey

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Re: When is it OK to give up?
« Reply #1152 on: January 23, 2009, 04:06:16 PM »
Hi Laura,

You are right about Alexander not knowing as much as an OS and happy to wait to see Mr Green as I know he will listen to my knee problems and take note how long its been going on for and the treatments I have had so far.

I know you keep saying might not need a scope but this catching on the lateral side of the knee can be very painful at times when it catches inside the knee and this is stopping me from walking ok and running. Its increased since I last had my knee looked at by alexander in june can feel the catching a lot more before could just about feel it.

Hope you are right and dont need to have a scope but cant see any other options at this late stage and its good to be prepared for a scope. If I did not have to have one would be fantastic but if I do know its takes time to recover and fine about it if it did come to it. Had over a year to think things through so ok with what ever Mr Green or another OS decides to do at the ROH when I do finally see one.

Have a good weekend  :)

Nick :) {2009} :)

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 Doc79316

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Re: When is it OK to give up?
« Reply #1153 on: January 24, 2009, 10:43:09 PM »
Hi Nick,

One thing I know from experience is that if you se another OS they will ask for certain clinical and diagnostic testing to be done long before any surgery is performed. Thsi may include x-rays and /or MRI/CT/Ultrasound/bone scans. These will give a good indication of what may or may not be wrong with your knee. From this, and expereinced OS will tell you if you nedd a specific surgery, if you just have to live with the problem or if a scope MAY be possible with a view to it being more of an exploratory operation where they can see what's going on inside, maybe with flouroscopy as well to help during the surgery.

Until you have a lot of test results, nobody should tel you that you need a scope. At this stage the onyl person who is in a position to do so, is the OS you previously saw and who has treated you up until now. However, yo've had no testing of any sort done for so long now that things may have changed inside your knee, so repeat testing would ahve to be done to get an accurate diagnosis/prognosis.

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation

Offline Doc79316

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Re: When is it OK to give up?
« Reply #1154 on: May 08, 2009, 09:52:41 PM »
Hi,

After a lot of arguing, consultations and extra hospital appointments resulting on 2 OS's from 2 different hospitals finally working together, it ahs bene decided that laser acupuncture MAY help with the mecahnical pain from my knee (although not with the nerve realted pain). Once I've had a 4 week course, a 2 week break and a second 4 week course, I will then (if still in pain) be put on the waiting list (only 2 months) for  TKR.

And the best part.......................I have an appointment opn Monday afternoon with my original OS at Solihull to get the results of an MRI I had back in December!!

Laura xx
Left knee surgery
08/06/02-L/Release
13/08/03-Fulkerson TTT
05/06/05-Stabilisation & Medialisation/Tendon Transfer
13/01/06-Proximal Hamstring Superior Stabilisation
06/03/06-RSD/CRPS diagnosed
20/07/06 + 03/04/07-Excision of scar tissue
29/05/15-Arthroscopy
02/03/20-Left transfemoral amputation