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Author Topic: So where do I go from here??  (Read 1486 times)

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Offline Jo

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So where do I go from here??
« on: April 11, 2006, 10:02:53 PM »
Well, I'm shall we say, disappointed with second O/S visit yesterday.  I've learned a great deal from him in the 2 visits I've had with him but he's now saying he can't do anything for my right knee because of the RSD, he says more surgery would make things worse, which leaves me where?  No proper pain control, no pain dr, no hope of walking pain free without the damn crutch nothing that anyone can do?  I'm finding this really really hard to swallow, and what made it worse was O/S told me yesterday that I have the three classic symptoms of RSD - temperature change, colour change and muscle wastage ALL of which should have been picked up much much earlier by old O/S and if it had've been picked up in time I could have actually got this thing into remission!!  But because he didn't pick up on the three classic signs until 12 months down the line and I didn't see the pain clinic until 18 months after the initial surgery and because this has been going on for nearly 5 years, new O/S says I'm gonna have to live with this for "a very long long time" GUTTED, I cried and cried when I got home yesterday, how can a qualified surgeon miss the three signs?  All of which were blatently obvious?    :-[
 
As for my left knee, well he x-rayed it and in his words there is substantial damage to the back of my kneecap, all accross the bottom of the knee cap which he said is strange as usually its damage on one side or the other but mines all along the bottom half both sides and he says it will need sorting out but he wants to wait until "things start to break off" and deterioate further then he will go in and sort it out, at which point he says if there is anything that needs "balancing up" he will do that at the same time AAARRRGGGHHH SORT IT OUT NOW!!!!  Dear me..so he's left me an open appoinment for 12 months, if I get further probelms with left knee in that time he'll see me direct, if not I will have to go through my own GP again but he says things will start to break off sooner rather than later..?
 
Not happy, where do I go from here, this guy is so good, explains everything clearly and listens too I was in there for 30 mins again yesterday but all this doesn't make me feel any better when he isn't prepared to touch my right knee which is the pain in the **** knee.....I just don't know what to do next.  ???
 
Sorry to go on but all this is hard to take in. 

Jo
-x-
 
Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline Doc79316

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Re: So where do I go from here??
« Reply #1 on: April 11, 2006, 10:37:33 PM »
Hey Jo,

I'm sorry I have no answers for you. What I do know is that I also have had TTT surgery and have RSD. My surgeon is also very good and if he thinks I need surgery, he'll do it within 6 weeks. No NHS waiting list for me - whether I have RSD or not.

When I asked him if more surgery would make the RSD any worse, he told me that I was dealing with the RSD in any case and any extra pain would be caused by what was wrong with my knee. Obviously there's pain after surgery, but I'd get over that regardless of whether the RSD was in remission or here to stay.

All I can say is keep your head up. It WILL get better even if ir does take a while. And don't apologise for going on. Feel free to moan and shout and whine all you like. We're here to listen to you and help any way we can.

Take care,

Laura x
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 Jo

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Re: So where do I go from here??
« Reply #2 on: April 14, 2006, 09:22:52 PM »
Hi Laura,

Thanks for your reply, I've really had a rough week with all of this, I'm kind of getting my head around it now but it is very hard to accept that the RSD could have been avoided!  I really don't know what I can do know for my right RSD knee, perhaps I will discuss things with my GP see if she has any suggestions.  Surely this can't be it?

I am so grateful for this site, I would be lost without it and all of the people on it - thanks to all.

Hugs & healing.

Jo
-x-
Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline Doc79316

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Re: So where do I go from here??
« Reply #3 on: April 14, 2006, 10:38:36 PM »
Hey Jo,

If you could keep the RSD under control would you get the surgery you need then? Have you been to pain management or tried alternative methods of pain control?
If you're anything like me, anything is worth a try once. If you don't like it, don't do it again.

If your OS is so good then why is he prepared to leave you in so much pain and with som much difficulty with your knees?

Laura x
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 Jo

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Re: So where do I go from here??
« Reply #4 on: April 15, 2006, 05:35:45 PM »
Hi Laura,

I've been to the pain clinic and was under a very good pain management dr.  Tried just about everything, blocks, drugs, tens etc etc.  The blocks, worked well on the burning/sensitivety on my leg but did nothing for the pain in my knee.  Because the block was at best supposed to last anywhere from 9 months to 2 years + and mine only lasted three months before it wore off, and because it carries it's own risks they wouldn't do anymore even though I asked them to as really this is the only thing that did anything.  They then offered me a spinal chord stimulator BUT no guarantee that it would work on the burning/sensitivety and highly unlikely that it would work at all on the knee pain because of the results of the blocks, this being the case I declined to have one implanted although I am wondering if I made the right choice as now I'm left with nothing, the pain clinic discharged me last year and nobody is even checking on the meds I've been left on?

As for the O/S, well he really is 100 times better than the old one but I'm not sure if, because what happened with the other surgeon (long story will IM you and explain) I think he may be being too cautious.  My argument is that, the blocks didn't do anything for the pain in my right knee, nor has anything else.  I've been told the pain in my right knee is - coming directly from the joint, arthritic pain, bone pain, mechanical pain?  But yet nobody seems to be able to fix it or wants to even attempt it?  They've not even done a scope to see if they are missing something, if they did this and found nothing than at least I'd have peace of mind knowing that there isn't anything that the O/S can fix but at the moment he won't even try because of his fear of making the RSD worse but I can't be the only one with this problem?

And why he want's to wait until things start breaking off in my left knee, I really don't know?  But it swells now, it's painful now, and I can't straighten it now so how much further does he want things to deteriorate?  I don't know...

Thanks again for your support, still not sure which way to go now?

Jo
-x-
Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline Doc79316

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Re: So where do I go from here??
« Reply #5 on: April 15, 2006, 05:54:07 PM »
Jo,

Can you get another opinion? A different surgeon may be both able and prepared to treat your kne problems regardless of RSD or not. Can't hurt to speak to another surgeon can it?

Laura x
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 Jo

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Re: So where do I go from here??
« Reply #6 on: April 16, 2006, 03:23:17 PM »
Hi Laura,

Thanks for coming back to me again.  I've seen 4 surgeons over the years, GP said when she referred me to this guy that she wouldn't send me to anymore because she's worried about the emotional effect all this is having on me?

The one thing I have come up with whilst racking my brains is, if I could get the pain clinic to give me the same block that lasted three months before - this one kills the sympathetic nerves although they do grow back, then surely the scope could be done whilst the block was active hence reducing the risk of making the RSD worse?  And as I keep saying, I really don't know how much more he wants to left one to deteriorate before he'll do something.  I'll see what GP thinks about it, but I'd have to be re-referred back to the pain clinic as they discharged me last year and I'm sure the waiting list is long.

At the end of the day I simply cannot give up looking for a fix especially for my right knee, as I explained the pain has been labelled as bone/mechanical/joint/arthritic pain, even anterior pain, my point being if they are not sure what it is, how can they say that they cannot fix it?

Thanks again.

Jo
-x-
Jo-UK

TTT right knee October 01  RSD diagnosed October 02, Arthroscopy left knee Oct 04

Offline lightedge

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Re: So where do I go from here??
« Reply #7 on: June 09, 2006, 12:44:42 AM »
I have been diagnosed with RSD. I'm going one more place in California to try to rule out a nerve entrapment in my sciatic nerve but I must accept RSD now. Nothing helped the pain but my biggest problem is muscle disfunction in my lower leg. I was in a wheelchair 4 months last summer because of pain and disablement in my left leg.

I went to a clinical trial of a new neuromuscular stimulator called the InterX 5000 by NRG. I'm fortunate because they are based in Dallas where I live. This device didn't solve my problem but it got me to a point where I only need a wheelchair for walks longer than 5 minutes which is much better than FULL TIME wheelchair.

Try giving NRG a call to see anyone practices with the InterX near you. It might help quite a bit. I bought one for a lot of money and swear by it. 972 665 1810.

Offline stgiles16

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Re: So where do I go from here??
« Reply #8 on: June 10, 2006, 01:48:57 AM »
Jo, I dont live in the Uk so I am not sure how things work there but I wondered something. Why would the pain clinic discharge you if you are still in chronic pain? Are you only allowed a certain number of visits? What do you do about getting new meds when they run out? I am sorry to hear that you are having so much trouble. I wish you luck with getting it straightened out and finding something that will help your pain.

missy
2 ligament recons right ankle
2 arthroscopic,
5 open knee procedures
2 Plica removals
bone spur removal
2 microfractures
4 debridements
2 open LOAs all on left knee
Arthritis,both knees, ankles, shoulders, elbows, hands,spine
Fibromyalgia
Arthrofibrosis
LOA & PKR 2/15/06
RA
in pain mgmt
TKR JAN 2012















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