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Author Topic: Help and Support Needed  (Read 4054 times)

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marhipster

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Help and Support Needed
« on: April 05, 2009, 08:49:03 AM »
I sent Dr. De Smet the letter below. If anyone has any ideas or help for me, please let me know.  I am very anxious to get my hip situation solved.

Dear Dr. De Smet,

I read about you in a book by Patricia Gabriel and on the Surface Hippy website.

I hope you are able to read this email and to respond as soon as possible.  I would appreciate that greatly.  I have a terrible hip situation.

I live in New York City and I an 53 years old.  I was an elementary schoolteacher until I became disabled due to complications with hip replacement surgery.

I had my first hip implant, which was a hemiarthroplasty stryker cobalt hip in 2003.  I had fallen and broken the head of the right femur.  The surgeon told me he was going to pin the hip and that I would recover nicely.  I was only 48 years old.  He removed my healthy hip without telling me and sent me home without indicating he had given me a hip replacement.  I found out a few days later when I went for xrays at another hospital.

The hip became infected within weeks and the same surgeon removed tissue and gave me intravenous vancomyacin.  I had a bad reaction to the vancomyacin and almost died.  My skin peeled off and my kidneys failed.  I was in the hospital for six months.
I pulled through, thank God.

The hip was never very good.  I was always in pain and it loosened fairly quickly.

Last year I decided to have the loosened hip implant removed and to receive a new hip.  I chose to go with ceramics because I have fears about metal ions and metal allergies. 

The surgeon put a cement abtibiotic spacer in first based on my infection history.  However, my blood levels for infection were fine and all cultures from the bone were negative.

The first bag of antibiotics I received (for precautionary measures) caused severe pains in my kidney areas.  Nurses ignored my call bells and refused to contact a physician to have my pain assessed.

On ther third day, a resident came to tell me the surgeon wanted to insert a picc line for a six week course of antibiotics.  Because I had such severe pains, I refused the picc line.  I was afraid of the complications from intraveneous antibiotics I suffered from in 2004.

Because I refused the picc line, a stretcher was sent to my bedside to take me to a psychiatric hospital.  I was taken to one of the worst psychiatric hospitals in the U.S. - Bellevue.  Although I had a patient right to refuse the picc line, my records reflected that I had a prior diagnosis of ''mental illness''.  (I suffered from bouts of depression since childhood.  I was never a dangerous or suicidal individual.  I went to a therapist for many years to help overcome the depression.  I did not exhibit any symptoms at the orthopaedic hospital and had been free of depression for years.) Thus, my past psychiatric history was used against me in a discriminatory manner and, in turn, this jeapordized the outcome of my hip procedure drastically.

I was left at Bellevue for four months without an orthopaedist to speak of.  I had no pain specialist and no physical therapy. The psychiatrist and nurses were mentally abusive.  When I complained about my lack of medical attention and pain medication, I was tortured with haldol injections and locked in an isolation room with just a mat on the floor.  I was unable to crouch down on the mat because of my hip and was left standing there in pain.

The original surgeon never came to see me and ignored all of my phone calls.  I left messages for him telling him I was in writhing pain.

The psychiatrist in charge insisted that cement hip spacers can last up to one year.  I told him that the pain was excruciating and I felt my bones and muscles in the hip area getting damaged.

After four months I was sent to a state mental hospital where many criminally insane patients reside.  I was told I could only go home to my Manhattan apartment if I agreed to use the surgeon who had abandoned me and inappropriately sent me to a mental hospital without necessary surgical follow yp.

I stayed at the state hospital for one month.  I have been home three weeks now.  My hip is a mess.  I am quite scared.

I am supposed to be operated on at Xpecial Surgery next week.  I like my surgeon very much.  He is from Germany.  The only problem is that he is very young and lacks experience.  He has only been in practice since 2005.  I have heard that he takes on a lot of difficult cases.  I don't know anything about his reputation.

My surgeon told me my xrays are very bad and that my case is a disaster.  He said the spacer should probably never have been used, and that it was left in too long.  I told him I have had bazaar symptoms and have felt physically sick since the spacer went in and he said my body probably had a reaction to the material.

I apologize for the lengthy email, but I felt you needed to know my story to understand how bad my situation is and to know whether you can help me..

I want my life back.  I would like to be a high school health teacher or an advocate for the mentally ill.  I want to be as athletic and active as possible for the remainder of my life.  I can't go through one more bad operation.  The hip might end up permanently unrepairable.

I might need bone grafting and I need to know that a surgeon can fix this mess without further damage and by lining everything up as best he or she can. I am interested in the safest biomaterials that are suited for my situation..

Do you think I am making a mistake by using such a new surgeon?

Would you be interested in my case?

Do you know anyone in New York or in the States who is excellent for a situation like mine?

I am afraid.

Please get back to me if you can.
Feel free to either email me or to call me.

Sincerely,

Mary

obxpelican

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Re: Help and Support Needed
« Reply #1 on: April 05, 2009, 09:23:20 AM »
Mary,

I am NOT a doctor, just another patient like yourself.  The advice I am give you is solely based on many cases I've read about.  All that said, if your case is a difficult I would NEVER go to any doctor who is not VERY well versed and VERY experienced.   Dr. Su is a doctor in NY, NY.  My surgeon is Dr. Gross, he's taken on very difficult surgeries too, he's in SC.  If you would not mind the travel and can afford the surgery I would go to Dr. DeSmet by all means.

Pat has many doctors on her list who are very experienced like Dr DeSmet--- too many patients have chosen the easy route because they did not want to travel, they picked someone local and they suffered the consequences.

Like a surgeon told me Mary, this is not cancer you have, you're not going to die...... what you need to do is get a good surgeon so that you can get on with your life without pain and complications.

In the mean time I will be sending lots of positive thoughts and lots of prayers your way.


God Bless you,

Chuck


Chuck
RH/Biomet U/C Dr. Gross/Lee Webb
8-6-08

stevel

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Re: Help and Support Needed
« Reply #2 on: April 05, 2009, 12:09:49 PM »
Mary,

You are at the best hospital for orthopedic surgery if "Xspecial surgery" = Hospital for Special Surgery = HSS, as they have been rated no. 1 for orthopedic surgery by US World News and Report for the second year in a row.  If so, at the hip replacement/hip resurfacing class, they mentioned three Drs. that do hip resurfacings.  I looked up one of the names and he is from Germany and is listed on this website as having done over 120.  I went to Dr. Su as he had done over 700 and is now exceeding 900.  He does complicated cases from all over the US.  There is no need to go overseas.  Read Dr. Bob Arnot's story and my story under Dr. Su's section of this website.  More information is available at www.hss.edu (both Drs.) and www.hipresurfacingnewyork.com (Dr. Su).
« Last Edit: April 05, 2009, 12:12:03 PM by stevel »
Steve
LBHR 60mm/54mm Dr Su 9/29/08 age 55
RBHR 60mm/54mm Dr Su 11/1/19 age 66

obxpelican

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Re: Help and Support Needed
« Reply #3 on: April 05, 2009, 08:10:19 PM »
Mary,


If the guy did 150, how many complications has he done?   I would beware of someone who has done < 500 if your case is complicated.

The moral of the story, pick someone with lot's of experience..... I would respectfully disagree with Steve, if you can afford the trip and the cost of surgery, Dr. Desmet is hip money in the bank, I would be willing to bet that he would fix you up with no other complications.

JMUO (just my uneducated opinion) and nothing against Dr. Su Steve, but I just do not think he's at the level of DeSmet.


Chuck
Chuck
RH/Biomet U/C Dr. Gross/Lee Webb
8-6-08

MarilynRS

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Re: Help and Support Needed
« Reply #4 on: April 05, 2009, 09:09:32 PM »
Mary -- No one should have to go through what you have described.  I will keep you in my prayers, that you find clarity in deciding what to do next and that you have a wonderful outcome -- finally ! 

Marilyn
Grateful !  U/c with Dr. Gross
L: 07/13/09 and R: 07/15/09

obxpelican

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Re: Help and Support Needed
« Reply #5 on: April 05, 2009, 10:16:49 PM »
That maybe the best post on this thread.

Good thing to pray for.


Chuck


Mary -- No one should have to go through what you have described.  I will keep you in my prayers, that you find clarity in deciding what to do next and that you have a wonderful outcome -- finally ! 

Marilyn
Chuck
RH/Biomet U/C Dr. Gross/Lee Webb
8-6-08

stevel

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Re: Help and Support Needed
« Reply #6 on: April 05, 2009, 10:21:59 PM »
Chuck,

Jane's story which is posted on this website, describes where Dr. Su replaced a botched hip resurfacing (steep socket angle) with a total hip ceramic replacement.  This was arranged by Vicky Marlow, who used to monitor this website.  Dr. Bob describes in his story where one of the inventors of the BHR device (must be Dr. Treacy or Dr. McMinn) told him there is no need to go to England for a bilateral hip resurfacing, so he went to Dr. Su at HSS.  I like the total package at the HSS, e.g. lowest infection rate in the US, best orthopedic hospital, insurance coverage (maybe not overseas), legal recourse if somebody makes a mistake).

Mary describes where she received a THR after a hemi resurfacing and then a cemented antibiodic spacer for a failed THR.  She is due to receive a ceramic THR.  This is getting complicated and going to the "most experienced" is prudent.  As a matter of fact, since we are talking about THRs instead of hip resurfacings, I wonder who is the most experienced (a Dr at HSS or Mayo Clinic or a Dr. overseas?).  I would ask Thomas P. Sculco, MD, who is surgeon-in-chief at the HSS and also does THR's.  Plus he has white hair and looks experienced, which may appease Mary.
« Last Edit: April 05, 2009, 10:37:37 PM by stevel »
Steve
LBHR 60mm/54mm Dr Su 9/29/08 age 55
RBHR 60mm/54mm Dr Su 11/1/19 age 66

obxpelican

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Re: Help and Support Needed
« Reply #7 on: April 06, 2009, 07:21:53 AM »
 As a matter of fact, since we are talking about THRs instead of hip resurfacings, I wonder who is the most experienced (a Dr at HSS or Mayo Clinic or a Dr. overseas?).  I would ask Thomas P. Sculco, MD, who is surgeon-in-chief at the HSS and also does THR's.  Plus he has white hair and looks experienced, which may appease Mary.

You raise an interesting point Steve, but in all cases I would go with the best most experienced surgeon in her case, it seems that Mary knows that as she personally wrote to Dr. DeSmet.  If she can afford the trip and surgery costs if I was her I would go overseas and see DeSmet white hair or not.   I do not think Mary is looking for appeasement, but rather she is looking for help by an experienced surgeon.  As a second choice (as a patient with complications) I would go for somone in the states with lots of experience like Gross, Mont and yes someone from HSS with experience......keep in mind that is what I said in my original post.

Keep in mind we're talking the difference between Dr. Bob's basic surgery for an HR and Mary's complicated surgery due to other issues.  Again, Dr. Bob's surgery was not complicated, Mary's is, we're beyond apples and oranges. 

If I had the $$$ and I had complications I would be heading overseas, if not I would seek out some of the aforementioned surgeons where I am reasonably sure I would get very good results.



Chuck
Chuck
RH/Biomet U/C Dr. Gross/Lee Webb
8-6-08

Pat Walter

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Re: Help and Support Needed
« Reply #8 on: April 06, 2009, 11:17:20 AM »
Mary

I wanted to say that I will keep you in my thoughts and prayers also.

I signed you up for this group in hopes it would give you some support.  I hope you will find your way here to talk with the people that give you support.

I emailed you privately and made my suggestions to you.  I also felt you should interact with the folks on this group.

I did not want people to think I was ignoring your since I already responded via private email.

We all wish you the best and hope you can find a quick solution to your hip problem.

Pat
Webmaster/Owner of Surface Hippy
3/15/06 LBHR De Smet

stevel

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Re: Help and Support Needed
« Reply #9 on: April 06, 2009, 11:20:11 AM »
Chuck,

Naturally, I'm biased towards Dr. Su as you are toward Dr. Gross.  Vicky Marlow (former monitor) has stated that she would go to Dr. Su if she was staying in the US.  Her and Pat went overseas to save $$$ before the BHRs were approved by the FDA in the US and had to pay totally out of pocket.  Dr. Su does bilaterals in the same day whereas Dr. Gross spreads them out over two days and Dr. Rogerson also spreads them out.  I vote for same day bilaterals.  Dr. Mont does the anterior-lateral approach which the leading Europeon hip resurfacing surgeons abandoned years ago due to problems with gait in some cases even though the hip resurfacing device was properly installed.

Note from Patricia Walter - Owner/Webmaster of Surface Hippy.  The informaton above that the anterior-lateral approach was abandoned years ago due to problems is incorrect according to my information.  Also Dr. De Smet of Belgium, my surgeon, told me in person at the 2008 LA 2nd Annual Course on Resurfacing, that some of the overseas resurfacing surgeons use the anterior-lateral approach for resurfacing surgery very sucessfully.  That is because they are very experienced.  I just needed to put the information I have received into this discussion since it was directly from Dr. De Smet, not another patient advocate's personal opinion.

So I think Dr. Su is the best (IMO) with 900 plus hip resurfacing surgeries, even though he is a bit behind Dr. Mont, Dr. Gross and Dr. Amstutz in volume but probably catching up fast.
« Last Edit: April 06, 2009, 02:32:12 PM by Pat Walter »
Steve
LBHR 60mm/54mm Dr Su 9/29/08 age 55
RBHR 60mm/54mm Dr Su 11/1/19 age 66

Pat Walter

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Re: Help and Support Needed
« Reply #10 on: April 06, 2009, 11:36:09 AM »
Just a note to remind everyone that Dr. Mont will do whatever approach your prefer including doing BHRs.  He is very talented and has done more resurfacings than any other surgeon in the US.

I will also remind everyone that the anterio-lateral approach is quite sucessful in the hands of an experienced surgeon.

The direct anterior approach is also very sucessful in both hip resurfacing and THR in the hands of an experineced surgeon.  The direct anterior approach has been used very sucessfully in Europe with hip resurfacing and now there are a few very excellent surgeons using the direct anterior approach to resurfacing in the US.

I just want to remind everyone to keep an open mind.  Do not listen to one person's opinion about what approach is the best if they are not medically trained or a doctor.  Patient Advocates, like myself, are great but everyone has to realize we are only ordinary people passing on information. None of us are medically trained or doctors. 

Vicky no longer posts on this website due to our differences about experineced doctors and surgical approaches. She has started her own website with a similar named to mine.  It is good to have a number of websites about hip resurfacing since we have many different opinions.

Remember, hip resurfacing is changing daily and what we accept now may not be the norm in the future.  I have already seen a number of changes in 4 years.  Keep an open mind and always try to use the most experinced surgeons - that way no matter what device or surgical approach is used - you will have the best chances of an excellent outcome.

Pat - Owner/Webmaster of the Surface Hippy Website
« Last Edit: April 06, 2009, 02:35:28 PM by Pat Walter »
Webmaster/Owner of Surface Hippy
3/15/06 LBHR De Smet

stevel

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Re: Help and Support Needed
« Reply #11 on: April 08, 2009, 11:52:46 AM »
Hi Pat,

In response to your edit above:  Then Dr. DeSmet should update his website.  A FAQ "What other approaches (not posterolateral) can be used in resurfacing?

Answer

1.  Anterior approach (Watson-Jones) (Smith-Peterson)
2.  Anterolateral approach
3.  Ganz-approach (anterior dislocation, after anterior capsulotomy and greater trochanter osteotomy)

All 3 approaches keep the vascularisation of the femoral head intact (circucmflex vessels).  The anterolateral approach has the disadvantage of abductor muscle destruction with possible persitent gait problems.

The Watson-Jones and Ganz approach do not have this problem where the big disadvantage in the Ganz approach is greater trochanter osteotomy.

1.  Possible risk on not healing of the osteotomy (pseudarthrosis)
2.  6 weeks pargtial weight bearing with 2 crutches are necessary (only 10 kg!)
3.  A second procedure for removal of the screws is necessary

Note his comment about the anterlateral approach above.

I also listened to Vicky's interview (part 1) with Dr. Mont at the AAOS meeting in Las Vegas in February 2009 last night, and he stated that about 20 % of his patients demand the posterior approach so he complies.  His preferred method is the anterior lateral.

A prospective patient sure has to sift through a lot of technicalities before proceeding with surgery.

I have one question:  Why is hip resurfacing more difficult than a full size metal head replacement?  Positioning of the hip replacement stem for THRs is critical for correct leg length.  This is not a problem with hip resurfacings although the Dr. needs to properly install the device for correct leg length.   
« Last Edit: April 08, 2009, 11:54:28 AM by stevel »
Steve
LBHR 60mm/54mm Dr Su 9/29/08 age 55
RBHR 60mm/54mm Dr Su 11/1/19 age 66

Pat Walter

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Re: Help and Support Needed
« Reply #12 on: April 08, 2009, 01:56:25 PM »
Hi Steve

What Dr. De Smet does not have on his page is that the anterior lateral approach can be very successful in the hands of very experinced hip resurfacing surgeons.  He told me personally that in Europe there are some surgeons using the anterior lateral approach with the Cormet and they are very successful because they are very experienced.  I will stand by that statement. 

I am not a doctor or medically trained. I can only share information.  Again, it comes down to using an experienced surgeon that your trust and let him/her decide what is best for you.

I have had this discussion in other places on Hip Talk and like Lee Webb explains - no one can fly a jet plane like the pilot, yet we all get on the plane and put our trust in him.  Hip Resurfacing is similar.  No matter how much you read and think you know - you can never have the experinced the surgeon does.  So a layman can't make the final technical decisions as to what is best for them.  They can read and ask - but after that you need to trust your surgeon.  You, as a patient, are only guessing.

I don't tell people to base their information on that of other people or patient advocates - I tell people to ALWAYS listen to their surgeon. 

I am not going to get into any more discussion about what approach is best.  Again, if you use the most experienced surgeons, the odds of people having good outcomes are very high.

Let's let the discussion of what surgical approach drop now.  In a few years, trends will change and you might be surprised as to what approach or device is best.  Again, the field of hip resurfacing is constantly changing. 

Hip resurfacing is more difficult than a THR because the cup has to be placed exactly properly and the cap on the femur must be placed properly for the loading and angles to be exact.  Sometimes it does vary depending on what the patient expects to do and their physically make up.  It is not an easy task according to all the surgeons I have listened to and watched do surgery.  I am not able to tell you more since I am not a doctor.

Please, let's use our energy to support each other and answer questions we know the answers to about our own surgeries and recoveries.  None of us are medically trained and able to answer the really techincal questions of hip resurfacing. Some people mistakenly think they are capable of answering the technical questions, but they are not medically trained.  This is not a place for surgeons to disucssion techniques, etc - that happens at the training courses for hip resurfacing where patients are not invited.

This is a patient to patient website where we share the information we actually know about - that would be your own surgery and recovery.

Pat
Webmaster/Owner of Surface Hippy
3/15/06 LBHR De Smet

 

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