KNEEtalk

The WAITING ROOM => GENERAL KNEE QUESTIONS and comments (good for new threads) => Topic started by: marco4432 on July 28, 2012, 09:58:12 PM

Title: Can any one help me understand what these Doctors tell me
Post by: marco4432 on July 28, 2012, 09:58:12 PM
Hi all, I had two arthoscopic and 2 denervation surgerys, in Las Vegas every thing failed so my PCP recomend that I go To UCLA Santa Monica, arrived on Tuesday saw a Dr B. OS specialality knee replacements, he reviewed my MRI and Dr notes, he told me knee looks great he does not recomend TKR and suggest I go to pain Management all this I have done before, Then on thursday i saw Dr G. OS speciality meniscus repair he ordered X ray's and I saw Dr B. looking over Dr G.s shoulder, Dr G. says I need a new knee (So does that mean that Dr B. lied to me), he told me that he spoke with Dr B. and said that Dr B. does not feel comfortable doing a new knee as I have had to much done, he told me that he would Email me when and if he can find a OS who would undertake the surgery.

So know what I can't live with my knee at present and am working 2 days a week just to keep insurance and pay rent, please please if anyone has any input please respond, I don't understand how one Dr can basically lie to me rather then tell me that he does not want to do the surgery, I just don't understand I have done everything Doctors wanted, I just don't get it if I can't work I cant live pay bills insurance, what do they want me to do lose everything and live under a bridge.

Please if anyone one has any input it would be greatly appreciated

Marco :'( :'( ??? [Note from KNEEguru - I have edited out the names of the surgeons as you are using expressions that might get the site into trouble for libel]
Title: Re: Can any one help me understand what these Doctors tell me
Post by: momma-cat on July 31, 2012, 07:29:55 PM
what this means is that you have enough already done to your knee that if they do a TKR, the likelihood that it will improve your situation is questionable and may even make your situation worse. This puts the OS in a positionof liability. If the TKR does not take and makes the situation worse, they are liable and you can sue them so it is better for the OS to defer your case. Does this make it right? Of course not but that is just the way it works. Sorry for you situation. I hope that you can find someone with the answers and treatment that you need.
Title: Re: Can any one help me understand what these Doctors tell me
Post by: MyKnee2010 on August 01, 2012, 02:52:18 AM
Hi Marco,

I've read some of your posts in the past as I have had nerve damage in my legs too. Didn't you say you had a lot of relief when the Dr tried a nerve block in your legs? If that is the case, I don't see why the Dr would think you need to have your knee replaced.

I have had both knees replaced & it did help cure some of my problems but it did not resolve the nerve problems. I ended up going to Massachusetts General Hospital (I live in North Eastern US) for the nerve surgery. They did a great job with helping relieve the nerve pain. I still have issues with the replaced joints & may need additional surgery to get that resolved.

I guess I'd just say - make sure you are having the correct surgery. I would guess that the first OS did not lie to you - he gave you his opinion. Each Dr will have their own opinion - I've found it's harder to find two OS who do agree rather than 2 who don't!  Keep looking for the right diagnosis & the right Dr.

Good luck!
Title: Re: Can any one help me understand what these Doctors tell me
Post by: marco4432 on August 03, 2012, 08:06:14 PM
Thanks for your replies,

The only relief was when the Doctor injected my knee with marcine or lidocaine, I had  immediate relief which lasted 4 to 8 hours, and thats why I thought it was nerves but both denervations failed, what gets me is that the knee replacment Dr looked at my MRI and said they indicated a good knee, wheras two days later the second Dr ordered X rays and said I had artheritis in all compartments, and the only cure would be to have a TKR, but he does not know if I can find an OS to do it, wow that's two completley different interpretations,  so most probably the first Doctor just did not want the liability, but where does that leave me  ???
Title: Re: Can any one help me understand what these Doctors tell me
Post by: MyKnee2010 on August 03, 2012, 11:09:25 PM
Sometimes it is very difficult for them to figure out what is wrong with a knee. I had calcium deposits built up in both knees. Two different OS said they didn't know what caused it,they just knew it would get worse but they didn't know how quickly. The calcium was like sandpaper in my joints tearing away at my meniscus.

I had my left knee scoped twice to fix tears. I still had massive pain. The first OS said there was nothing he could do because the xrays & MRI didn't really show much. He told me to go talk to someone else. Great doc, huh?

The second OS determined that I had nerve damage in my leg probably caused by the first surgery so I had that pain as well as the joint pain. The OS kept trying different little things basically just trying to stall until I gave up & went away. He didn't know I was so determined! I finally backed him in a corner & told him to DO SOMETHING!!! He then agreed to replace my knee. He was really worried about whether he did the right thing or not. He really stressed that this was very iffy on whether it would help or not. It turns out that it did help quite a bit so 6 months later he replaced the other knee.

The TKA on the second knee helped some but not as much as the first knee. I still have joint problems in both knees & am going to have an appointment with OS #4 in Sept to see if he can figure out what's wrong.

Before I had my first knee replaced I asked the OS if he could go in with a scope & just look to see what was happening. He said sometimes you can open the knee & look all around & still not be able to tell what's wrong.
He couldn't tell if my knee had any problems until he cut the end of the bone off & then he could see the damage.

I trusted that this OS was a very good surgeon & I waited until I couldn't stand the pain any longer. It's kind of a crap shoot I guess....  I am still convinced that I made the right decisions but I think a big part of itwas luck!


Title: Re: Can any one help me understand what these Doctors tell me
Post by: marco4432 on August 04, 2012, 08:50:22 PM
Missmy knee,

If I may ask how old our you, I am 48 and the pain is becoming unbearable, I take Fentanyly 100, 5x 30 oxycondone ir 30 mg per day 4x 16 mg exalgo Cost insurance $2200 per month for 120 pils,, restoril for sleep clonopine relaxing, between the meds and the pain its driving me insane, Os says I'm to young for a TKR I work on my feet and now work 1-3 days a week, pretty sure I might get fired if I cant work more.  So on the one knee that worked could you tell me would you be able to work standing and walking for 6-8 hours, thanks for your help


Marco
Title: Re: Can any one help me understand what these Doctors tell me
Post by: MyKnee2010 on August 05, 2012, 10:26:09 PM
Hi Marco,

I'm not sure if you meant me or not (Missmy Knee?) but if you did: I had my first knee replaced when I was 50 - a couple years ago. I have a couple days a week at work where I am on my feet most of the day for about 14 hours. It's tough but I do it. The rest of the days I am sitting more but still very active.

I found some ice cooler things that are great to wrap around my knees. They are like bubble wrap but each bubble is full of water. You put it in the freezer so each little bubble freezes. It is flexible enough to wrap around your leg under a foam brace or whatever type of brace you have. It feels wonderful! Working on my feet a lot has been good for keeping my muscle strength up but it does make some days very, very challenging!

I've been dealing with my painful knees for about 4 years now so I know what you mean about having to deal with chronic pain! My pain has gotten better since having my knees replaced but I still have problems. I hope you are able to find an OS who will help you - it may take awhile but keep persisting!

Title: Re: Can any one help me understand what these Doctors tell me
Post by: marco4432 on August 06, 2012, 08:36:29 PM
Thanks for the reply greatly appreciated, could you tell me where to find the ice wrap that you mentioned, also I,m still trying to find an OS who will do the surgery before I lose my job and health insurance ( then probably my life !! )

My knee is getting worse everyday, I have become so opiate tollerent that the med's don't work, IF I may ask did you have the surgery that cuts into your quads or the minably invasive one where the cut is about 5 inches and does not cut the quads, How long was your recovery ( back to work}, how did you persuade your OS to do the surgery, I live in Las Vegas, the OS here that I have seen don't seem to want to operate as I have had four surgerys, my PCP told me to go to LA UCLA Santa Monica same responce. I'm at a loss I don't know how to persuade an OS to operate, I will lose my job money car payments home, health insurance, Then what look for a Job that's out of my profession ( Rest Manager )

Thanks for letting me vent

I'm sorry for all the questions but you responce is greatly appreciated
Title: Re: Can any one help me understand what these Doctors tell me
Post by: MyKnee2010 on August 11, 2012, 12:54:42 AM
Hi,

The ice wrap I use can be found at Walmart or Target. It's usually in the outdoors dept with the coolers. It's pretty cheap & they seem to last a long time.

As for how to find an OS who will do a TKR -- that's the difficult part. I've found I have the best luck with doctors when I go in fully prepared & act as professionally as possible. I've gathered all of my past medical records & organized them in a 3 ring binder with a summary timeline at the front of the binder. I make a copy of the summary for the OS & go over it at the beginning of the first meeting. I think you really need to show them you've done everything you can up to this point to try to resolve your knee problems. Going to PT helps also. If you can get a report from the PT that's important to include also. Keep a record of what you've tried & how your knee responded. I find it helpful to keep a journal so I can report new pains or higher/lower levels of pain. Anything you can possibly do to show how serious you are about this is helpful.

Maybe you can talk to your primary doc & ask him to refer you to another OS. Maybe he could send some info about your condition to a number of OS to see if your problem might be something they'd be willing to look at. There are OS who will replace a knee at a younger age than 47. I know of one guy who was 36 when he had his knees replaced. If you get an appointment with a new OS you might try being proactive on the question of should a younger person have his knees replaced. You can tell him you have thought of all the pros & cons & then list the pros & cons as you know them & tell him how each pro or con would affect your life & how you would deal with it.

You want to sound as knowledgable & objective as possible. I know it's very hard to be objective & not too emotional when dealing with this. I've blasted off on a couple OS in the past & it hasn't gotten me anywhere so now I am really trying to not let my next OS appointment go down that road. It's ok to rant or fall apart after the appointment but try not to during it - I don't know if I'll be able to follow that advise but I will be seriously trying to.

I don't know any OS out your way - I live in NorthEast US. Look online & then discuss them with your primary doc to see who might be the best ones to approach.

Good luck! Don't give up - this is a challenge but it is doable!
Title: Re: Can any one help me understand what these Doctors tell me
Post by: silver14 on August 11, 2012, 03:32:51 PM
Marco,

I know this may sound extreme, but if things get that bad you may want to look into SSDI even if it is temporary until you can get some relief from your knee problems.  I also live in NE, but I know that here there are many resources in my town that I can take advantage of for food ect. if I needed to, try local churches, food banks, and town resources. If you are unsure of how to get started, and again I live in NE, but we have a 211 number It may feel like you have given up or given in, but sometimes  a helping hand is all you need to then get yourself back on track.  Having constant financial worries does not help you recovery.  I am fortunate enough to have an OS that has been very truthful with me and when he did not enough knowledge of my condition he sent me for a second opinion with an OS who was more familiar.  I am also seeing a wonderful, knowledgeable pain management dr. who has been supportive and helpful.  I agree with myknee t is important to be calm and knowledgeable about your dx, symptoms and treatments. Let the OS know everything you have tried which has worked and failed. Try to be as positive as possible about the whole situation with the attitude that you may be frustrated but really need to have a resolution of your problems.  I think we have all had our days, pity parties, blow ups which comes along with the desperation and hopelessness you feel when no one seems to have an answer or cure for what is wrong, Keep your head up and keep on pursuing all avenues that are available to you.  Life will give you a break, just got to keep your head up.  You are in my prayers. 
Title: Re: Can any one help me understand what these Doctors tell me
Post by: marco4432 on August 11, 2012, 10:01:46 PM
Thanks everyone for all your advice, As usual I have tried to contact the OS who told me I need a new knee, but as usual it seems he has dumped me or changed his mind, called a few times his assitant says she see's nothing about the OS contacting me with a referall, and that she would have the OS call me, still have not heard anything.

I'lve looked into SSDI seems it takes years to get approved and even then there's no guarantee, I don't have the funds to wait ad see, I guess I'll keep going until I cant work any more, I don't want to live as a cripple so looks like there's only one way out.

Thank you all for your time and consideration
Title: Re: Can any one help me understand what these Doctors tell me
Post by: silver14 on August 13, 2012, 04:08:08 AM
Marco,

 look up he company Allsup, they help you apply for SSDI.  I do believe they may charge a fee for service, but it is worth it.  And to people whom I have spoken to it  takes on the average 3 -6 months to get through the process, but a lot do get denied the first time and usually accepted on appeal. This is where Allsup comes in they do all the leg work and follow ups and keep you informed of what is going on and they get many accepted the first time. Mt long term disability company uses them.  check it out and start it now since it is a long process.