KNEEtalk

The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: daedalus on November 12, 2008, 03:10:08 PM

Title: Extremely Frustrated and Losing Hope
Post by: daedalus on November 12, 2008, 03:10:08 PM
I've posted about my problem here before, but still have not found any solution so I could really use some more advice.

I'm 31 and injured my knee in a motorcycle accident 2 1/2 years ago.  I fell on my knee and had a deep cut down to the surface of the tendon but the tendon and ligament are intact.  No surgery to date.  I have constant pain and throbbing in my knee when standing, walking, driving, etc.  I can't pursue the activities I once loved, and it's killing me inside.

I have seen at least 5 OS's and had 3 MRI's done.  All MRI's are negative, and show no internal damage.  I realize that MRI's are not always 100% accurate and may not catch everything. 

Several doc's suggested acupuncture, so I'm trying that now.  I've had two sessions with an acupuncture doc.  His looked at my X-Rays and MRI's and his diagnosis is that the blood flow to my knee has been restricted which is causing throbbing/numbness/pain.  The first two sessions he gave me multiple shots of Marcaine in my knee.  Extremely painful.  He's very patient and spends a lot of time with me, but I've had absolutely no improvement so far.  Maybe it's too soon to say.

He is very confident that acupuncture will work, and he said several times I should absolutely not get an artheroscope done because there's no need and it may make matters worse.  But if I'm getting no benefit from the acupuncture what other option do I have?

I'm seeing yet another OS tomorrow to get his opinion.  But now I'm scared to get a scope done because I definitely don't want to make things worse.  And if there is really no internal damage, what good would a scope do?  I'm just extremely frustrated now and becoming hopeless that my pain will ever go away.   

Thanks for letting me vent, and I appreciate any advice you can give me.
Title: Re: Extremely Frustrated and Losing Hope
Post by: jathib on November 12, 2008, 03:48:40 PM
I think I've replied to your posts before. You've tried everything, you're still in pain. If you're still in pain then something is wrong. Since MRIs were negative the only way a doctor is going to be able to see the damage and fix it is to go in and look. It's time to get a scope. They rarely make things worse. You can only get better. I don't know what kind of medical training acupuncturists get but I don't think they're medical doctors. He has a vested interested in preventing you from getting surgery. How long are you going to mess around? You could have the scope and be healed in a month.
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on November 12, 2008, 04:26:11 PM
jathib thanks for your reply.  Yes, you have responded to me before.  I'm sorry to keep posting about this, but I'm just being pushed in so many directions.

The acupuncturist is a board certified medical doctor.  He is a personal friend of my mother, who is also a physician.  In fact, he does not even take my insurance but is treating me out of professional courtesy.  He's not making a dime, so I really think he has my best interest in mind.

I will see what the OS tomorrow says.  He is very highly regarded and is also a friend of my mom, so I think he should give me some good advice.  One on hand, I'm very lucky that my mom knows these doctors but on the other hand it sometimes gets confusing when they give such differing advice.

Title: Re: Extremely Frustrated and Losing Hope
Post by: gigi67 on November 13, 2008, 06:29:24 PM
sometimes we just need to vent about our frustrations and that is perfectly fine..we have all done our share. I agree that if all other avenues have been explored than it cant hurt to scope around in there...they can see better whats going on inside. Is there any differences in the temperature or colors in your legs...what about the skin? is the bad leg shiny compared to the good one?  ANy burning type of pain? Does it wake you up out of sleep or prevent your form sleeping? sometimes after injuries and periods of immobilizations RSDS ( CRPS) can develop ( Reflex Sympathetic Dystrophy Syndrom ) ( Chronic Regional Pain Syndrome) and often explains what is otherwise off the chart, unexplainable pain. Has your doc referred you to a neurologist or made references to this condition?

 I am not saying that all cases of unexplainable pain is RSDS because it is not the case always and Im not saying thats what is going on with you but it can develop and some doctors  arent always aware of this or dont think about it...my OS didnt even know what it was..told me to look it up on the internet when I was diagnosed with it...wasnt his specialty. I am currently in RSDS " burn out" other than ocassional discomfort or my foot staying very very cold if I let it get cold to begin with so i try hard to keep it nice and toasty. but it is no longer purple and such horrific pain I want to cut my leg off.... :P

anyway  make sure you post back about the outcome, etc and know that we do all understand your frustrations and its okay to voice them...even if your scared  or hesitant  to try other things  you are stll entitled to grumble.I really hope you find an answer soon so you can begin some sort of treatment to regain more functionability..but please do keep i mind...sometimes we cant go back to the things we use to do...18 months post injury I still cant squat down..not even half way to the floor..I have to have something to hold onto, then drop down on my good knee..but just to do a full squat to the ground...aint happening..I cant bike like I use to love to do...because I know my quad is so atrophied it wont catch me if I became unstable..so i have  learned to love other activities like...walking for example..because I went so long without such a simple pleasure...anyway I do wish the better things for you soon!
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on November 14, 2008, 03:10:09 PM
gigi, thank you for the kind words.  I'm glad you are able to go for walks again, and I can relate to enjoying even a simple pleasure like that after seeing how it can be taken away.  I'm learning to take up new activities which I may not have pursued otherwise.

Here is the update after seeing the OS yesterday.  He looked at my MRI's, X-rays, physically inspected my knee, and observed me walking around (I don't have a limp).  His diagnosis is much different than the other OS's I have seen.  He said I have a mild case of early arthritis, which was probably a pre-existing condition that was aggravated by my injury.  He said I should definitely not get a scope, because my ligaments, tendon, and everything else is intact.  He said a scope may actually make things worse.

I was kind of hoping he would recommend a scope, and I was ready to just have it done.  But it was the opposite.  He said there is absolutely nothing I can do to improve the condition, and it will only worsen over time.  My heart was literally in my stomach.  He basically said I just have to learn to deal with the pain and it will be there forever. 

Keep in mind, this OS is supposedly one of the best.  His name is Dr. Alfred Tria.  He kept saying, don't worry, there's nothing to worry about, etc.  But now I feel even more hopeless that there is no solution.

I saw my acupuncture doctor again last night, for my third treatment.  I told him about Tria's diagnosis and he reassured me that there is still a good chance that acupuncture will work.  Time will tell I guess. 

I'm confused about a few things though.  I thought a scope is a diagnostic tool?  How is Tria so sure there is nothing wrong without looking inside?  But now I'm even more hesitant to get a scope after he recommended so strongly against it.  Also, several other radiologists and OS's have seen my X-rays and MRI's.  Is it possible none of them detected the arthritis, and only Tria saw it?  Or maybe it's more likely that Tria is wrong.  Maybe he thinks my mild OCD is arthritis? 

I'm not expecting answers to all of these questions.  Just venting and putting my thoughts out there.  Thanks for listening.


Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on November 14, 2008, 03:30:59 PM
gigi, I forgot to answer your othe questions.  My bad knee is not a different color or shiny.  Once in a while, very rarely, I get a burning type pain in it.  It does not wake me up from sleeping.  Actually, when I'm laying down that's one of the few times the pain goes away.

None of the docs have mentioned RSDS.  I will look into that myself.  Thank you for the information.
Title: Re: Extremely Frustrated and Losing Hope
Post by: gigi67 on November 15, 2008, 03:06:31 PM
dont give up! pain is not  something we have to simply accept and crawl in a hole disheartened ask your Os about pain management clinics...I dont buy that response of " nothihg can be done...just get worse blah blah blah" if thats the case then he can help get you on disability. ask about pain management or to be referred to an arthritis specialist who can confirm if that is really what it is by viewing the x rays and mri..it is odd no one else mentioned it

also have you tried hydrotherapy? that really helps sooo much esp arthritis pain and just general stiffness...it helped me to get up and walking my first year into my recovery before I had a set back or two but dont accept that answer..dont let anyone tell you theres nothing can be done...if it is truly arthritis then there are options..they can shave it off, injections, meds, rehabs, hydrotherapy, etc...like I said i would go see a rheumatologist and see if he /she confirms the DX and then set your mind to focus on treatment options. He is an OS..all they do is piece back humpty dumpty's broken pieces..thats it....thats what Ive been told when I tried to blame mine for lagging on treating my RSDS and other problems not related to broken bones...the arent bone specialists...just bone surgery specialists so arthritis wouldnt be his forte. and so cannot determine there arent any options to explore.
Chin up  and pull your heart back up out of your stomach...get a referral for rheumotologist or go on your own..ask  your OS about shaving off the arthritis and pain management options... and perhaps even call your other dr's who saw the x rays and ask them specifically if they saw arthritis iin them....keep that water therapy in your brain too and ask about that! check out the arthritis board here and post there as well...keep pushing forward  in determination to be your own advocate an as well as getting your life back to the best of your new abilities. :D
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on November 15, 2008, 07:34:45 PM
Thank you, gigi.  It really helps being able to post here and discuss this ongoing battle.  Well, my mother and I showed my X-rays and MRI's to the head radiologist at the hospital here.  He said he does not see any arthritis at all!  I also asked another doctor I had previously seen.  He looked at my films again and said the same thing - no arthritis! 

So I'm really doubting that Tria's diagnosis is correct.  I'm learning to be very skeptical of doc's, even the highly regarded ones.

gigi you are absolutely right, I will not give up.  I'm determined to fix this or at least make it better.  I know many people here have had much worse injuries, and they have managed to improve so there's no reason I can't do the same.

I will look into hydrotherapy.  My acupuncuture doc has put me on a regimen of alternating heat/ice treatment, strenghtening exercises and massage.  I'm doing that every day.  If the acupuncture doesn't work after a couple of months, I will look into a scope again.

Tria's main reason for recommending I don't get a scope is that it can't help arthritis.  But if he's wrong about the arthritis diagnosis, I should not rule out a scope completely. 

Thanks again for listening and helping me out.  I really appreciate it.  I will update as I find out more.
Title: Re: Extremely Frustrated and Losing Hope
Post by: jathib on November 15, 2008, 07:38:30 PM
I don't think you'll get any relief without a scope. I don't know why you're so against having one. It could mean relief from all your pain and frustration.
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on November 15, 2008, 10:07:50 PM
I'm not against having one.  I'm just trying to keep it as a last resort after other non-invasive options are exhausted.  And since more than one doctor has strongly advised me against a scope, it makes me think twice about just jumping in and doing it. 


Title: Re: Extremely Frustrated and Losing Hope
Post by: gigi67 on November 17, 2008, 11:19:34 PM
theres nothing wrong with caution...alot of suregeries have been in vain but a scope is a relatively simple procedure...however that being said even scopes have lesser dangers but dangers all the same so "scoping out "all of your avenues and researching and getting opinions is  in my opinion  a very reasonable plan of action.
 ;)
 I think you are on the right course of trying things, getting opinions and then making an educated decision. you just keep us posted on how things go for you okay? ... take care.
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on December 04, 2008, 10:12:08 PM
Here is an update on my situation.  I saw my OS on Monday and he spent a good amount of time with me.  He read my MRIs and X-rays again, then physically examined my knee.  Everything shows my knee to be normal with no damage.  But the pain is real and I struggle with it everday.

His diagnosis is chondromalacia patella, but he cautioned this is a very general term.  Basically he doesn't know what is causing my pain becuase everything appears normal.  Bottom line is he does not recommend a scope at this time.  He said he would bet that if he did a scope he would find nothing.  He suggested I do another 12 sessions of physical therapy and see what happens.  I'm also doing alternating heat/ice therapy at the same time.

One one hand I guess I'm lucky there is no severe internal damage.  But on the other hand, I feel as confused as ever because the cause of my pain remains a mystery. 

The doc said if physical therapy doesn't work, we can try the scope but he would probably just go in and cut the plica.  He said there is some chance that may alleviate the pain, but he wouldn't count on it. 

I'm hoping physical therapy will help me improve, but I'm not really sure.  I did two months of PT last year and showed zero improvement.  I'm trying to keep a positive spirit about it, but I'm really afraid I'll have this pain for life. 

This injury happened 2 1/2 years ago.  After that long, is there any chance I can improve it?  What do you knee geeks suggest?  Thank you for reading.
Title: Re: Extremely Frustrated and Losing Hope
Post by: jathib on December 05, 2008, 01:17:14 PM
After two and a half years I'd skip the PT and tell the doctor to do the scope. It would be a no-brainer for me.
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on December 05, 2008, 02:09:15 PM
Even if the doctor himself thinks he will find nothing by doing a scope?  He basically said if we do a scope, he thinks he will not see anything wrong inside my knee and then just cut the plica and see if that helps me.  Doesn't sound very reassuring to me.

Also, am I wrong in thinking a scope is a diagnostic tool?  Isn't it possible the MRIs and Xrays don't show something that is wrong?
Title: Re: Extremely Frustrated and Losing Hope
Post by: eaglemom on December 05, 2008, 02:33:29 PM
MRI's and xrays do not always show everything.  Now that goes both ways - the os goes into a knee from something he's seen on the mri and when he scopes the knee its a totally different situation.  Also nothing shows up - but the knee is scoped and he finds something / several things wrong in there.  Scopes are tools, yes.

Having said that I totally understand you not wanting to get a scope.  As blunt as this sounds (and I don't mean for it to sound that way) you are the only one who can decide what you want to do.  Don't "get talked into it" or "talked out of it."  You are the one in pain - not the os. family doc, personal friends, etc.  Do will get to a point where your ready to make that decision. 

I've been "recovering" quite sometime.  The os says "it shouldn't hurt or be doing that.  Go see a neurologist. I'll let him handle this from now on."   So I do just that, and he says "well hummm several things are going on, but I'm not sure so lets try medication then go back to os."  They both now want me to see a neurosurgeon!  On certain days the knee/ leg really isn't too bad - then I'm ready to have something done immediately because of the pain / discomfort.  I'm the only one who can (or will) make that call. 

Hang in there - eagle
Title: Re: Extremely Frustrated and Losing Hope
Post by: jim2406 on December 05, 2008, 03:50:56 PM
daedalus,

some words of hope:

i have had several surgeries on my left knee, after a quiet period everything was OK then my knee started crunching (And hurting) as I straightened it.

had MRI scans, x-rays, etc... didn't show anything. OS wouldn't go near it again, said its 'just crepitus' and to live with it. I saw someone else for a second opinion and was told 'its just wear and tear... youll need a knee replacement in a few years probably'.

i saw a new surgeon, who said he can have a look, since something seems wrong, and if he finds something and fixes it, great - if he doesn't, the odds of it making things worse are low.

i had the surgery.

turns out i had a small bone spur getting in the way of the knee straightening. as soon as i woke up my knee felt better and i can straighten it now without pain.

i still have other problems, but i had those anyway. so even though 2 OS' told me that there was nothing wrong and nothing i could do, and scans were negative, there was still a surgical solution that made things better.

good luck,
jim
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on December 05, 2008, 04:42:09 PM
eagle mom and jim, thanks so much for your replies. 

you are absolutely right that i am the only one who can make the decision about surgery.  the good thing is that out of all the OS's i've seen (and i've seen a lot - 5 or 6), i trust this last one the most.  he said he is a "minimalist" and if i elect for surgery, he would do the bare minimum he deems necessary to fix the problem and not touch things that don't need fixing.

at this point, i'm thinking i will try the PT for a month and see if there is any improvement whatsoever.  if not, i will probably bite the bullet and get the scope done. 

it's sad to say, but i'm starting to think i will just have to deal with this pain for the rest of my life.  i'm only 31 and was formerly very active.  i know many people here have problems much worse than mine, and i give them so much credit for being strong and working through it.  it's not easy.
Title: Re: Extremely Frustrated and Losing Hope
Post by: jathib on December 05, 2008, 04:52:43 PM
Even if the doctor himself thinks he will find nothing by doing a scope?  He basically said if we do a scope, he thinks he will not see anything wrong inside my knee and then just cut the plica and see if that helps me.  Doesn't sound very reassuring to me.

Also, am I wrong in thinking a scope is a diagnostic tool?  Isn't it possible the MRIs and Xrays don't show something that is wrong?
Absolutely, if you're in pain then something is wrong. MRIs and x-rays can miss things. Maybe the plica is causing pain. If you have one then you have something in your knee that is not supposed to be there. They cause pain.

Scopes are indeed diagnostics tools. It's what they use when they can't find anything else with non-invasive tests and the patient is still in pain. Again, if you're in pain, something is wrong. After more than two years I'd think you'd be ready. When the pain is bad enough you will be.

So, say your doctor goes in and finds nothing. You're sore for a month and then back where you started no worse for the experience. But what if he does find something? He fixes it and a month later you're asking yourself why in the hell you waited so long. Yes, I know, some people get worse after scopes but the majority don't. It's a chance you take when you get desperate.  Personally, I find that scopes of the knee are a walk in the park. I've had four of them and was back to normal within a month each time. And this is when something *was* wrong beforehand. I realize I'm nonchalant about surgery since I've had so many of them (over 20) and I've never ended up worse for the experience. For other people it's a major amount of stress and fear and a whole lot of other things. I think you know this isn't going away because you keep coming in here and telling us about it and seemingly wanting people to tell you what to do. At the end of the day, you have to make the decision yourself. Either spend the rest of your life in the pain you're feeling now or suck it up and get the scope. We can't decide for you.
Title: Re: Extremely Frustrated and Losing Hope
Post by: daedalus on December 05, 2008, 05:19:04 PM
thanks for your response, jathib.  i agree that i am getting to the point where i don't have much to lose by getting a scope.  i'm just not convinced i have much to gain either by getting a scope. 

i am not expecting people here to tell me what to do.  i post here to discuss my issue with people who may have had similar experiences or may have more knowledge about this subject than i do.  i know that complaining won't solve anything, but it does help me just to vent sometimes.  i really appreciate everyone's help and i understand in the end the decision is mine.
Title: Re: Extremely Frustrated and Losing Hope
Post by: jathib on December 05, 2008, 06:03:02 PM
thanks for your response, jathib.  i agree that i am getting to the point where i don't have much to lose by getting a scope.  i'm just not convinced i have much to gain either by getting a scope. 

Actually, you do have something to gain, a resolution to your pain. You're looking for hope, a scope will give you that.
Title: Re: Extremely Frustrated and Losing Hope
Post by: gigi67 on December 08, 2008, 09:06:19 PM
hey D

I personally think that it is wise of you to consider this so thoroughly. Many people jump right into surgeries without fully researching options, possible complications, further complications that surgeries can lead to. the truth is there have been  unecessary surgeries performed..most surgeons are advocates for it because ..thats their service...surgery.. ergo the word " surgeon " in their title. ( I'm not being smart with you I promise) :D

I have also had a great many surgeries performed in my life and I CAN say that had I been properly informed I may have made a different decision here and there althoug ultimately each surgery was overall necessary but you have to take the good with the bad of course for example: ...  one surgery can create too much scar tissue and some surgeries followed by immobilization can sometimes lead to RSDS which is what happened to me but i got over the worse part of it all in time.
Therefore your are certainly not wrong in waiting this out as you have done. that being said..there may come a time when you do have to make a decision one way or another and just deal with things as they happen..because nothing at all may happen and you may bounce back like a rubber biscuit and feel fantastic!  ;) some of my " lesser" surgeries went  very smooth indeed and I dont regreat them at all!!!

I have been without insurance since august and although I have had some pain issues with my knee and older break to my tibia..I have not been back to a dr because of obvious reasons associated with no insurance..BUT even though my insurance will kick in January..I could run right off and go to my OS and ask for an MRI, scope, etc...but I figure I have made it this long without a dr involved and simply dealt with any discomfort Ive had as it comes..
in a sense I have learned to live with it. as many do. the truth is that i dont  know of anyone that doesnt hurt somewhere on their body every day.
Of course that doesnt mean you dont have options..you clearly do:  scope \  2nd opinion \ try current OS suggestions\ decide its bearable pain and find quality of life somehow\ ask your Os about other options like pain clinic, injections, etc

And you r right:
your doing what everyone else here does....coming here to find others with the same experiences
or similar ones...and that is part of the process of making and " informed decison".. " informed"..requires research and asking and discussing.. so you are not doing  anything wrong nor are you coming here looking for someone to tell you what to do..you are seeking opinions and help and suggestions..thats one of the primary reasons everyone else comes here..some come here to offer encouragement after they have made their journey, some are new and scared and want reasssurance, some seek information only, some need opinions of others, its normal to say " what do you think ? "  ..most people ask that before even simple daily activities such as ...oh say ordering at a restaurant. ::)
so you are fine....
keep asking and keep searching and keep posting.!  sorry for any typos thats par for the course for me!  :)