Revision TKR Knee replacement is not nice to me...

[sashayinglady]

Praying for your community to heal after this tragedy. So sad.
I'll also pray for you, I really don't have any suggestions except "bug the ****" out of your PCP. My mother is allergic to everything under the sun & when she finds an antibiotic or pain med that works, within a few doses she breaks out in hives. Last reaction we had to treat with EPI subQ in the MD office because the ER refused to give Epi because of her cardiac history. Crazy!
Take care!

 

[sunflower]

I just need to try to find some way to manage my pain and I don't know how I am going to do that without help.

Coachie, do you have a pain management clinic in your town? Can you ask for a referral to a neurologist that specializes in pain management? I really hate that you have to suffer so much. :cry4: I'm sorry too that you lost two students to a senseless tragedy.

 

[Coachie]

Coachie, do you have a pain management clinic in your town? Can you ask for a referral to a neurologist that specializes in pain management? I really hate that you have to suffer so much.

That is the problem. There is a pain management clinic that my pcp wants me to go to in a nearby town, but the earliest they can see me is August 30th- and even that day is just a seminar and not an actual appointment. My appointment will be a few weeks after that. This is the earliest I can get into any pain clinic according to my pcp.


I have called my PCP's office 4 times in three days. Have yet to speak with her and have yet to get any answers. Frustrated doesn't begin to describe what I am feeling right now.

 

[Dewy]

Coachie,

Your PCP (=GP?) sounds useless. Have you considered:

i) Formal written complaint about his/her lack of responsiveness

ii) Changing GP

See my comment under Wantoride's post.

 

[sunflower]

I have called my PCP's office 4 times in three days. Have yet to speak with her and have yet to get any answers. Frustrated doesn't begin to describe what I am feeling right now.

I don't know what it's like to be in your shoes but I would think that I'd get so fed up with it all that I'd 1) go to the ER or 2) make a personal appearance at the pain specialist's clinic and beg, plead, rant, cry to the receptionist until someone took me seriously.

This is just awful ! I don't know why it has to be so difficult to get much needed medical attention and better pain management.

 

[wanttoride]

I agree, Coachie. Time to find a new PCP, or head into the ER on Union Street.

 

[Coachie]

I actually got my pcp to finally agree to call the pain management clinic herself and tell them it was urgent. They now have me scheduled for the seminar next Thursday (the 23rd) instead of at the end of August. Works good for me because it is the first day of summer vacation so it would be nice to start off my summer with some positive results.

 

[wanttoride]

Good work, Coachie! Sometimes it takes a "team" effort!

 

[Jamie]

I'm glad to hear that step forward, Coachie.

 

[Coachie]

Yeah, but she said there were not any appointments any earlier but you got in for Monday? How the heck? I really don't get it. My Dr's office called down too and said I needed an early appointment- that it was urgent.

There is no way for me to get into the orthopedic's office any earlier as he said I had to wait for that stupid one year mark and then he is on vacation over the 4th, etc, etc. I see him July 15th.

 

[wanttoride]

I know how frustrating this may seem, and surely is. Whereas I've already been diagnosed with RSD/CRPS, which is the root of my pain, I'm not seeing him for a diagnosis, as you are. I don't know how I got in...if there was a cancellation, or they made room for me. I know most people DO go to the information seminar before their appointment so that they will know what to expect, and what the center can do for them. I think it also prepares you with questions to ask, and things to bring so you are prepared on your first visit, which is usually a lengthy consult and information and history taking session. Xrays and other tests may be ordered at that time also.
Had I not previously been diagnosed with RSD, I, too would be waiting for the informational seminar as well.
Once this year passes, "Coachie", you will find that things will progress much faster....and after you see Dr. Walsh, also. I'm confident in that!

 

[JennyI]

Hang in there Coachie. You are in my thoughts and prayers.

 

[Coachie]

Thanks Jenny. I appreciate it!

So I called to confirm my appointment next Thursday at the pain management clinic. The receptionist told me that even though they fit me in earlier for the informational session that I still might have to wait until late August or early September before even getting an appointment for an evaluation- let alone getting some actual pain management. I asked her what she meant and she said that unless there are cancellations, they are scheduling 2-3 months out. She also told me that sometimes even with cancellations they don't take the people who are on the top of the list. They often take people who live closer- knowing that they can make it to the appointment on shorter notice. Since I live about an hour and 15 minutes from the clinic, it doesn't look like I'll remain top of the cancellation list :(

I don't understand how or why all of these places get so far behind in scheduling and have to schedule so far away. How is making someone wait for 2-3 months effective in pain management? Obviously if I need to go to pain management, wouldn't that mean that I need help? So what are people expected to do in the meantime? If I could manage my pain, would I really need to go to this rehab center? My mind is just boggled by all of this.

 

[sunflower]

So what are people expected to do in the meantime? If I could manage my pain, would I really need to go to this rehab center? My mind is just boggled by all of this.

Perhaps getting in to see a different GP or OS who is more likely to treat your pain until you can get in to see the specialist? Somebody somewhere will be able to help you short term until you get in to see him.

I was battling knees that would swell up for no reason and when I went to see my OS, he determined that I had gout. We tried different meds but I would continue to have more flare ups so he referred me to a rheumatologist. I had to wait 6 months to get in to see her. I tried scheduling with other rheumatologists and the waiting period was just as long. :arghh: I finally had to work with my GP/OS to manage my pain until I could see her. Talk about frustrating! I certainly can sympathize with you, Coachie.

 

[Coachie]

I really don't have any options left for me at this point. My family dr. has said that there isn't anything they can do- that is why I agreed to try out the pain management clinic (even though I didn't want to.) I've talked to several other dr's and they all agree with mine.

Basically, I have to live with this pain and deal the best I can until someone can figure out why I am having the pain. That is why I am so upset. I've been trying to deal with this for a year and I'm tired.

 

[Dewy]

Coachie,

I wouldn't necessarily take what the receptionist said as "gospel" - she may have been talking through her hat - receptionists sometimes talk all sorts of nonsense.

The fact that your GP has told them that your case is urgent and you've now got an appointment for the seminar fairly quickly indicates (to me at least) that your main appointment should follow soon afterwards.

GPs can make routine referrals to specialists (which take months) or urgent referrals (which should only a week or so). (I'm not sure if there are any in-between categories.) The schedules are arranged to allow spaces for these urgent appointments. Once your GP has classed you as urgent, all the lights should turn green and your main appointment should come quickly. The GP is the gatekeeper, which is why it is so important that they have your case correctly categorised.

That is how it works in the UK anyway, but I would be supprised if it was so different in the US?

Rather than asking the receptionist about timing of your appointment, perhaps ask the specialist's secretary? You should mention that you understand that your GP has told them that your case is urgent.

If you still get the message that your main appointment is months off, perhaps go back to the GP and let them know.

 

[Jamie]

In the US, most doctor's don't have their own secretaries. The clinic will have an admin staff and maybe even a designated person who schedules appointments.

But you're right....there is another person who should be in the know that you can talk to. That would be the doctor's nurse. This person will carry some weight to be able to get a scheduling done in a more timely manner if needed. These nurses can wield significant power in the process and they are VERY knowledgeable about the medical aspects of problems that patients might have.

So, Coachie....now that you have an appointment even though it's for a consultation, you are officially a patient and therefore you can contact your doctor's nurse to discuss your specific situation. I'd do it!!

 

[Coachie]

I asked them yesterday if they could schedule me ahead of time so I wouldn't have to wait another week before being able to schedule a consultation. She told me that they are not allowed to do that because if you don't go to the informational seminar, you cannot get any treatment. They won't take people on their word that they'll be at the seminar so they won't schedule until you are seen AT the informational appointment.

 

[WaterBaby]

Aw, Coachie, I can see how frustrating this all is! A real Catch-22 scenario. It stinks so bad and it isn't right.
I don't have any advice to give you - just a whole lot of sympathy, and admiration for your perseverance in the face of so many run arounds and obstacles. Surely you will get a break soon! In the meantime, keep coming to the forum to get some encouragement and understanding to keep you going...

 

[wanttoride]

Coachie, There are a several pain specialists in the Bangor area. I don't know why your PCP can't call a few and see how open their schedule is. You don't HAVE to go to the "rehab center". Your PCP can refer you anywhere. Also, YOU can call any of the pain centers, doctors or clinics yourself and see how far out they are, and if they need a referral from your PCP (based on your insurance guidelines).
You year's anniversary from your surgery is sooner than a possible appointment at the rehab center. My guess is that once you see Dr. Walsh, he may have a clue as to why you are having pain, and then be willing to possibly scope your knee, or do other diagnostic tests.
Please remember....the pain clinic is not going to be able to diagnose the problem without Dr. Walsh's one year input. If after you have tests, etc. to determine WHY your knee is in pain, and IF those tests come back inconclusive, it is then that the pain clinic will be to your benefit. You've already had an EMG, so you are way ahead of the game.
Stress is a BIG part of pain. I have been EXACTLY where you are right now. Jo and Jamie can attest to this. Please don't take this the wrong way, as I am only trying to help. If you are "anxious" and your medication isn't helping, I would talk to your PCP about that. Waiting when you are in pain really "stinks". Most of us are at the mercy of the "wait a year" period. Can you imagine how I felt knowing that my knee was put in crooked, and I had to go almost 4 months....4 MONTHS....!!!!! in order to have the revision surgery because I HAD to wait a year. You want to talk about frustrating and totally ticked off? !!!!!!
You are closing in fast on the one year, AND your appt. with Dr. Walsh. Try to concentrate on that appointment, rather than the appt. with the pain clinic if you can.