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Author Topic: Doc recommendations?  (Read 1810 times)

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Offline centaur532

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Doc recommendations?
« on: October 29, 2005, 09:55:58 AM »
Well, my appointment on Wednesday went as thus:  'I don't know what's wrong with your knee, I'm stumped and I can't do anything else.  You need to get another opinion.  I don't even know who to recommend.'-my OS.

I'm not angry at all because he tried his very best and ran all the tests he could think of.  However, he had no idea who to send me to next.  His one thought was Dr. Fulkerson in CT. 
Does anyone know of a good specialist with an interest in soft tissue/tendon damage/knee issues?  I'm in the New England area, but at this point, I am willing to travel (and I can do it for free, thanks to my brother being a pilot).
In the past few days I've started to notice pain around my patella as well as the posterior pain.  It started medially, but now I also have an odd sensation located at the top and behind the kneecap.  It's not so much pain persay, as a very strange sensation.  More of a distended feeling?  And my knee feels very shaky, as if it could give out any minute when I walk.  This is entirely new to me and fairly uncomfortable.  Any thoughts?

Hope you're all doing better and aren't in too much pain at the moment. 
Cheers
B
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline My Sister Sam

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Re: Doc recommendations?
« Reply #1 on: October 29, 2005, 02:47:50 PM »
Is there a reason you aren't interested in seeing Dr. Fulkerson? If you are agreeable to traveling, you'd be in very good hands with him.

Have you seen any other knee specialists in your area? I suspect there are a number of doctor's in Massachusetts, Boston, who are knee specialists. Have you been to any others? Perhaps you might look up other knee specialists close by before you start thinking about traveling.

Wish you the best.

« Last Edit: November 06, 2005, 12:57:36 AM by My Sister Sam »
'70 Auto accident - Salter Harris IV fracture distal femoral epiphysis - R knee
'71 R - Bony Bar Resection femoral epiphysis
'78 L - Epiphysiodesis
'79 R - Distal Femoral Osteotomy/LR
'04 R - TTT/Medial Reefing 
'05 R - Trochleoplasty/Medial Reefing/TTT
'05 R - AIR/LOA
'07 R - TKA

Offline centaur532

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Re: Doc recommendations?
« Reply #2 on: October 29, 2005, 05:11:38 PM »
Is there a reason you aren't interested in seeing Dr. Fulkerson here in Connecticut? If you are agreeable to traveling, you'd be in very good hands with him.

Have you seen any other knee specialists in your area? I suspect there are a number of doctor's in Massachusetts, Boston, who are knee specialists. Have you been to any others? Perhaps you might look up other knee specialists close by before you start thinking about traveling.

Wish you the best.

Liz

My OS also told me that there were about 100 OS's in the area who would basically tell me the same thing or thereabouts.  Thankfully, being at school in Amherst means that I am not that far from Dr. Fulkerson.  I am definitely willing to go pay him a visit and see what he thinks.  At this point, I will go to anyone and try anything.  I'm glad you think highly of him as that gives me confidence.  My goal is to get back to a full courseload next semester.  Nothing huge, nothing that will really require much out of the knee except the ability to sit through my lectures.  I'm really hoping he can do that for me.
Cheers!
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline pwt13

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Re: Doc recommendations?
« Reply #3 on: October 29, 2005, 07:30:09 PM »
Depending how far you are willing to travel, the Cleveland area has 2 nationally recognized ortho departments.  One is at the world renknowned Cleveland Clinic and the other is at University Hospitals.  I have had various orho surgeries done at both and have not ever had any issues at either one. From personal experience, I prefer Dr. Brian Victoroff or Dr. Shana Miskovsky (both are at University, www.uhhs.com) she correctly diagnosed my medial meniscus tear without an MRI and repaired it within in 48 hrs. of my initial visit. While any surgery sucks I feel confident, based on prior experienc with these Docs that everything will be OK!

Of note Dr. Miskovsky spent about 40 minutes performing various physical tests on both my knees befoe she made her diagnosis.
10/13/05-R.knee,medial meniscus repair(buckethandle tear)
Feb.04-R.shoulder,Torn labrum,torn rotator cuff,subacromial decompression,clavical resection
Feb.02-L.shoulder,Torn labrum,torn rotator cuff,sub-acromial decompression,clavical resection
Oct.00-L.Shoulder,Torn labrum,torn rotator cuff

Offline Heather M.

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Re: Doc recommendations?
« Reply #4 on: October 30, 2005, 09:24:58 AM »
I may be wrong, but I thought Dr. Fulkerson had retired....?  Maybe I'm mixing him up with someone else...

Anyway, if I had your mystery knee problems I'd go see one of the other top knee docs in the world--Dr. Steadman in Vail, CO.  He's been doing knees for something like four decades, and I'm pretty sure he's seen it all!  I had about half a dozen doctors refuse to treat my knee further, even though I was in terrible shape.  They all said there was nothing to be done and more surgery would make me worse, but Dr. Steadman knew what had to be done and did it.  Too bad I waited so long, as I have permanent mechanical changes.

So I'd recommend going to Vail and being seen by Dr. Steadman or one of the other knee docs there (Steady has a long wait, but it is well worth it!).  Not only are the surgeons at Steadman-Hawkins top notch, but the physical therapy facility is one of the best I've ever seen, and they can likely give you valuable input as well.

Here's more information on the clinic and knee issues.  http://www.steadman-hawkins.com

Heather

PS Have you been evaluated for hip and/or back problems as well?
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline My Sister Sam

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Re: Doc recommendations?
« Reply #5 on: October 30, 2005, 01:58:39 PM »
Dr. Fulkerson is not retired. I has another surgery with him last month, and will be seeing him again in just a few weeks.

Where did you hear that he had retired?

« Last Edit: November 03, 2005, 09:31:24 PM by My Sister Sam »
'70 Auto accident - Salter Harris IV fracture distal femoral epiphysis - R knee
'71 R - Bony Bar Resection femoral epiphysis
'78 L - Epiphysiodesis
'79 R - Distal Femoral Osteotomy/LR
'04 R - TTT/Medial Reefing 
'05 R - Trochleoplasty/Medial Reefing/TTT
'05 R - AIR/LOA
'07 R - TKA

Offline centaur532

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Re: Doc recommendations?
« Reply #6 on: October 30, 2005, 08:50:09 PM »
I may be wrong, but I thought Dr. Fulkerson had retired....? Maybe I'm mixing him up with someone else...

Anyway, if I had your mystery knee problems I'd go see one of the other top knee docs in the world--Dr. Steadman in Vail, CO. He's been doing knees for something like four decades, and I'm pretty sure he's seen it all! I had about half a dozen doctors refuse to treat my knee further, even though I was in terrible shape. They all said there was nothing to be done and more surgery would make me worse, but Dr. Steadman knew what had to be done and did it. Too bad I waited so long, as I have permanent mechanical changes.

So I'd recommend going to Vail and being seen by Dr. Steadman or one of the other knee docs there (Steady has a long wait, but it is well worth it!). Not only are the surgeons at Steadman-Hawkins top notch, but the physical therapy facility is one of the best I've ever seen, and they can likely give you valuable input as well.

Here's more information on the clinic and knee issues. http://www.steadman-hawkins.com

Heather

PS Have you been evaluated for hip and/or back problems as well?

Thanks for the website and tip.  I read about Steady somewhere else on the board, so I looked him up.  I talked with my parents about going out to CO, but they'd prefer I stay at least New England local for now.  Part of the big problem is that it's not the actual joint itself giving me trouble.  All I've really been tested for are joint problems and for some reason, the joint is behaving but the muscles/tendons around it are not.  This is making a diagnosis extremely difficult.
I do have lower back problems which were discovered last last September and treated successfully by a chiropractor (oh, the x-rays were extremely pretty, up there with some of y'all's knees on a scale of screwed up!) and I have no hip issues.  I am one of those really annoying uber flexible people.  So no go there.
I'm calling Dr. Fulkerson's on Monday to get an appointment.  I also have an appointment on Tuesday with an intergrative medicine doctor to see if he can find something everyone else has been missing.
We'll see how it goes :)
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline Heather M.

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Re: Doc recommendations?
« Reply #7 on: October 30, 2005, 09:14:24 PM »
Dr. Fulkerson is not retired. I has another surgery with him last month, and will be seeing him again in just a few weeks.

Where did you hear that he had retired?

Liz

My mistake.  I think I'm mixing him up with the other big-name Dr. F--Dr. Fowler.  HE has retired, I'm sure.

B--you say it's not the joint, but the muscles etc. around it...maybe that is part of the problem.  You can't really separate the joint from the soft tissue around it.  You have to look at the whole package.  I mean, my original problem was the soft tissue on the lateral part of the knee, but it eventually caused degenerative changes in the joint itself.

Anyway, I think you're on the right track--find a superstar surgeon with decades of experience.  One who is intrigued by a mystery case like yours, not intimidated!!  It's the best feeling in the world when you've seen a bunch of doctors and been blown off and told to live with it, and then you finally find THE doctor who looks at your knee and knows what is wrong...and how to fix it.  Also, keep an open mind.  You've had one surgery, so perhaps the problems you have now are a result of complications of that?  I had the same pain post op that I had pre op, but for a completely different reason...it really messed up the diagnostic process, because my surgeon was chasing red herrings.

Heather
« Last Edit: October 30, 2005, 09:18:20 PM by Heather M. »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline centaur532

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Re: Doc recommendations?
« Reply #8 on: October 30, 2005, 09:25:33 PM »
Quote


B--you say it's not the joint, but the muscles etc. around it...maybe that is part of the problem.  You can't really separate the joint from the soft tissue around it.  You have to look at the whole package.  I mean, my original problem was the soft tissue on the lateral part of the knee, but it eventually caused degenerative changes in the joint itself.

Anyway, I think you're on the right track--find a superstar surgeon with decades of experience. One who is intrigued by a mystery case like yours, not intimidated!! It's the best feeling in the world when you've seen a bunch of doctors and been blown off and told to live with it, and then you finally find THE doctor who looks at your knee and knows what is wrong...and how to fix it.  Also, keep an open mind.  You've had one surgery, so perhaps the problems you have now are a result of complications of that?  I had the same pain post op that I had pre op, but for a completely different reason...it really messed up the diagnostic process, because my surgeon was chasing red herrings.

Heather


I appreciate the vote of confidence and support.  I've been starting to think I'm not going down the right track with the type of specialist I've been going to.  That it wasn't an OS problem or something. 
I have wondered if it's a complication from the first surgery-it would be making my life so much easier if the MRI and bone scan had shown anything. 
I'm really holding out for the big guns now, I know I don't have to live with this for the rest of my life, and I refuse to.  As time goes on, I've been reducing my goals to smaller and smaller accomplishments.  Now all I want is to make it to all my lectures.  I hate school!  This is what it's come down to!  Something has really got to give :) 
Also, it's comforting to hear you had a similar problem, because it makes me sound less crazy.  I'm tired of being told this is all psychosomatic.
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline JenSinclair

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Re: Doc recommendations?
« Reply #9 on: October 30, 2005, 09:35:07 PM »
You might also want to check out some soft tissue sports med people.  I can't recommend any names, but if Dr. Fulkerson doesn't think it's a job for an OS, he might send you along to someone who deals more specifically with soft tissue problems.

Good luck!
Jen
LR/TTT 3 August 2006, RK
LR/TTT 16 June 2005, LK
CPMs are evil.

Offline centaur532

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Re: Doc recommendations?
« Reply #10 on: October 30, 2005, 09:39:43 PM »
You might also want to check out some soft tissue sports med people. I can't recommend any names, but if Dr. Fulkerson doesn't think it's a job for an OS, he might send you along to someone who deals more specifically with soft tissue problems.

Good luck!
Jen

Thanks.  I've been thinking about finding one, I just wouldn't know where to begin looking!  Hopefully I will get a name from him, as my last OS couldn't recommend anyone besides Dr. Fulkerson.
Current tally:
7 diagnoses (all wrong!)
8 doctors
4 knee braces
3 rounds of PT
2 cortisone shots
2 MRIs
1 bone scan
1 surgery
countless X-rays
-----------------------
No solution!

Q: What has one leg and says arrrrrrr?
A: Me when you cut my right leg off and give me a peg leg.

Offline Heather M.

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Re: Doc recommendations?
« Reply #11 on: October 30, 2005, 09:56:09 PM »
I know it's frustrating.  I went through 5 procedures in 10 months.  But prior to that, I had a single scope to remove a torn bit of meniscus and a cyst, and to do a lateral release to cut through the tight lateral structures and realign my kneecap.  I initially did okay, but then about 8 weeks post-op started a steep decline.  There were MRI's and x-rays and such done, and I was essentially told it was all in my head and I was just a slow healer.  I was told to push through the pain and stop being so sensitive.  Then, they found a knee full of scar tissue on a second surgery--this DID NOT show up on MRI or x-ray.  It should have been picked up in a physical exam, but my OS and PT didn't really know what to look for and were distracted with the symptoms.  I was given a series of about six different potential problems--each time, the doc was confident that THIS was the problem...six times.  It was infuriating and frustrating.  Then the OS started talking about phantom pain and nerve damage and things that were 'outside of his hands.'  He was basically dropping me, in a very nice way.  I was so angry, because he had ruined my knee and then refused to even prescribe pain meds to help me deal with the problems.  PT dismissed me because there was nothing more they could do.  My insurance cut off payments for 'palliative' care because there was nothing to do to 'cure' my condition, so they said any treatments were a waste of money (gee, pain relief is a waste of money??).  

Believe me when I say that I know what you're talking about.

When I finally saw Dr. Steadman, 6 other doctors had refused to help me (including a hotshot at the Mayo Clinic).  Steady knew exactly what was going on within 2 minutes of starting my exam, and didn't bother to order MRIs because they often don't show scar tissue (which he believed had regrown in my knee, despite numerous removals).  And when I woke up from my first surgery with Steady, he stopped by my bed in post-op to tell me a story...about how most of his arthrofibrosis patients (excess scar tissue) had been told to see phsychiatrists before they finally saw him, because they had been told that the pain was all in their heads.  He told me "your pain is all in your knee."  It was so nice to know that he GOT IT, that he understood the frustration of having a rare knee condition that defied conventional treatment.

Good luck with Dr. Fulkerson, but keep in mind that he is the patello-femoral expert in this country.  However, if you have a problem that is not related to patello-femoral mal-alignment, mal-tracking, chondromalacia, bad mechanics--whatever you want to call it--then you may want to seek other opinions elsewhere.  For example, I don't know that Dr. Fulkerson has a specific arthroscopic and PT regimen for dealing with arthrofibrosis, but he does do some of the larger open procedures that can deal with altered mechanics caused by arthrofibrosis.  Dr. Steadman does the scope and PT regimen, but not the big open procedures.  So just keep in mind that even the best of the best OS's have areas of specialization, and if your problem doesn't fall into that area, then that expert may not be the one for you.  Just like, as wonderful as Dr. S. is, he's not the one to help someone with serious mal-alignment who may need a Fulkerson procedure, because he told me he doesn't do them.  That's been one of the hardest things for me to deal with; I've seen about 5 nationally-recognized experts in certain conditions, but four of them specifically said they couldn't help me because my problem didn't match with their skill set.  I'm actually quite grateful they did say that, but many doctors won't--they'll just say "you can't be helped," rather than "I can't help you, but someone out there can."

So anyway, while it would be great to stay in your particular region of New England, it may or may not be possible.  If you have problems related to scar tissue, try some of the experts in Boston--Dr. Gill, Dr. Millett's office (I think he just moved back to Colorado to work with Dr. Steadman again).  There are a couple others.  Of course, arthrofibrosis would be a complication of surgery, likely.  But it can easily be missed by MRI and by someone who doesn't know what to look for, so it may be a possibility that you have to deal with and dismiss.  Sometimes it's as important to identify what you don't have so that you can focus on what you might.

You'll find lots of people who have been through similar knee journeys  It sucks to not be on the bell curve, because it seems that a lot of doctors only treat the bell curve!  That's why it often pays to go see a surgeon used to dealing with rare and exotic injuries.  I think you're definitely on the right path, now.  It's only a matter of time until you get your diagnosis.  Make sure whatever doctor you see does a full assessment of back, hip, feet, and legs beyond just the knee.  You'd be surprised how often a problem manifests itself in the knee that starts somewhere else.  The fact that a chiropractor treated your back doesn't mean that you can't have back issues lending themselves to knee problems, unfortunately.

Heather
« Last Edit: October 30, 2005, 10:00:43 PM by Heather M. »
Scope #1: LR, part. menisectomy w/cyst, chondroplasty
#2-#5: Lysis of adhesions/scar tissue, AIR, patellar tendon debridement, infections, MUA, insufflation
#6: IT band release / Z-Plasty, synovectomy, LOA/AIR, chondroplasty
2006 Arthrofibrosis, patella baja
http://www.flickr.com/photos/hmaxwell

Offline JenSinclair

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Re: Doc recommendations?
« Reply #12 on: October 30, 2005, 10:01:54 PM »
Wow...I realise anew each time I read stuff like this how lucky I am to have found the right OS on the first try.

Let us know how it's going and what Dr. Fulkerson says.

Peace,
Jen
LR/TTT 3 August 2006, RK
LR/TTT 16 June 2005, LK
CPMs are evil.















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