MUA It's been a long time.....

[NatalieMeadows]

I was in such a mess when I came out I just agreed about the medical records and left,I think it's because the new doctor wants them right now and Mr Porter will need to add to them too.
I agree about me seeing one of his colleagues I'm almost positive he will say the exact same thing but I will see him and then walk away from that hospital.
Sonja I so hope Dr Maale can help me but I feel so deflated I can't see anything fixing me anymore :(
My fight has got up and walked away :(

 

[RestAssured]

Well then Nat, climb on my shoulders, and hang on!

I promise you I will NOT stop fighting for you! Amy heard your story for the first time today, and she was appalled by the way you have been handled! Amy is "The gatekeeper" to Dr. Maale, but she and I have formed a bond. Well. I have with Jeannie, and the rest of the crew as well. It's funny, I'm shy but they seem to like me anyway!

By the way, don't let ANY doctor fill your head with rubbish that this is as good as it gets! He obviously doesn't know Dr. Maale very well, when he said he didn't want you to get your hopes up because Dr. Maale is already envisioning putting in the new knee, getting rid of any lingering SC and taking care of any other messes that were left behind!

BoneSmarties are united! Keep the faith Nat and don't give up on us! If the next consultant says sorry nothing can be done don't be shocked. Just say, I need the scans and records please, because there is a doctor in Dallas who KNOWS something can be done!

 

[Brownie51]

Wow Dr. Maale has awesome credentials. Is he willing to do a "cross the pond" review of records Sonja?
About Dr. Maale

Named a Best Doctor in Dallas 2006​

Board-Certified Orthopaedic Surgeon Fellowship-Trained in Bone and Soft Tissue Tumors, Infected and Complex Joint Reconstruction and Revisions Gerhard Maale, MD is the founder of the Dallas Ft. Worth Sarcoma Group. Dr. Maale has more than 30 years of experience treating bone and soft tissue tumors, metastic bone disease, musculoskeletal infections, infected total joint arthroplasty and complex bone and joint reconstructions. Dr. Maale specializes in complex reconstruction of joints that have failed from previous surgeries, with a high percentage of limb salvage. He has pioneered several techniques for the treatment of infected joint reconstructions and is actively involved in the design of limb salvage implants for the hip, knee, shoulder and elbow. His research interests include bone and soft tissue tumors, metastic bone disease, osteomyelitis, and total joint arthroplasty infection. He has co-authored numerous scientific papers on the diagnosis and treatment of tumors and infections of the musculoskeletal system and has a special interest in biofilm.

He graduated from the University of Florida School of Medicine in 1975, and completed a residency in Orthopaedic Surgery at the University of Virginia. He then spent one year as a Fellow of Orthopaedic Oncology at the University of Florida under the direction of William F. Enneking, M.D.
Prior to founding the Dallas Ft. Worth Sarcoma Group, Dr. Maale spent two years as an Associate Clinical Professor in Orthopaedic Surgery at Texas Tech University in Lubbock. Currently, he holds several academic positions, including Clinical Associate Professor at the University of Texas Southwestern Medical School in Dallas, and at Texas Tech Universities of El Paso and Lubbock. He also serves on several committees involving cancer research.
In 1990, Dr. Maale founded the Dallas Fort Worth (DFW) Sarcoma Foundation a nonprofit research group. He is actively involved in medical research dealing with the treatment of our patients with sarcomas (bone cancer) and musculoskeletal infections through this Foundation. This group includes a multidisciplinary medical professionals group, including many sub-specialists experts. Dr. Maale and the DFW Sarcoma Foundation strive to optimize care for patients with sarcomas and musculoskeletal infections through ongoing collaborative research programs.

 

[Brownie51]

Well I couldnt get the rest to post. It would be so great if he could review Natalie's records!

 

[NatalieMeadows]

Sonja I don't know what I did to deserve such an amazing person to come in my life I hope after a few days I will feel stronger for now ill climb on those shoulders until my fight returns.
Please say a massive thankyou to Amy and the rest of the team.I will send an email to the records department about the scans and I will ring Monday.Will the MRI be ok to begin with?

 

[Celle]

Hi Natalie,

I understand how upset and frustrated you must be at this point, but please don't give up.

So, your OS has out-manoeuvered you (the system wins, yet again!) in referring you for a second opinion to a doctor of his choice! I have no doubt that he will give his opinion to this doctor, which will influence that doctor's opinion.

You are entitled to know at least what your OS thinks is causing all your pain and weakness. And why he thinks nothing can be done. It sounds to me as if he is trying to dismiss you as just a hysterical woman, whose problems are all in your mind. That is just so untrue! His attitude (unless he has given you a full and believable explanation) also sounds remarkably like a case of covering his own back.

I can understand that you were knocked backwards by the response you got, but that is why you took your husband. That is when it would have been helpful if he had spoken up and explained that you needed more information and that you wanted to see Dr Maale, regardless of what your surgeon said (you do have the right to choose who you see for a second opinion).

When you see this other surgeon, take your husband again. Make it clear to your hubby and to the surgeon that you are not leaving the appointment until you have your records in your hand. You have waited more than long enough for them and you have played along with the system up till now. It's time to get hard-nosed and insist on your rights. If necessary, talk to a patient advocate and take him/her along with you for that appointment.

While your OS could be right, and there may be nothing more that can be done, you just can't give up and accept that until you have pursued all your options - and that includes getting Dr Maale's opinion. You are still young and you owe it to yourself and your family.

Have a big cry and a big rant (you're allowed to do that, too!) and then take up the fight again.

I know, from my experience as a nurse in England, that sometimes consultant surgeons think (and are treated) as if they have a status next to God. In that situation, it's easy to feel as if they are superior and know it all, but really they are human beings, just like the rest of us.

My brother-in-law is a consultant surgeon. He puts on his trousers one leg at a time (just like us), his wife yells at him (just like we do to our husbands at times), and he has all the bodily needs of any other mortal. If you feel intimidated by a doctor, just imagine him sitting on the 'throne' before he gets in the shower each day.

Good luck and lots of hugs!
Celle

 

[NatalieMeadows]

Celle

Thanks so much.Hubby did have his say he told him that we were told Wrightington was a centre of excellence after already bring treated for 3 years and what we were told was another centre of excellence in Birmingham and so far no one has helped so what did he expect us to do when the new doctor said there was nothing he could do and Mr Porter said he would refer us to London but again I would be getting my hopes up.To which hubby replied all we have is hope and we need some definitive answers not just there's no more we can do.
Porter just kept saying I was a difficult case and everything that could have been done has been done over the last 9 years and not one thing has worked for longer than 6 months so what is the point in repeating such operations and treatments.

Without a doubt he will talk to the new doctor and he will say all the same things which will make me and hubby look stupid but we want to ask him if he is anymore experienced in SC and if he has dealt with anyone with it as Porter hasn't.

He said until I excepted this would be my life I had no hopes of moving on :(

 

[Campervan]

Sonja I don't know what I did to deserve such an amazing person to come in my life I hope after a few days I will feel stronger for now ill climb on those shoulders until my fight returns.
Please say a massive thankyou to Amy and the rest of the team.I will send an email to the records department about the scans and I will ring Monday.Will the MRI be ok to begin with?

Hi Natalie, people come into our lives for a reason. God has put Sonja into you're life and I know she says she's shy, but shes also stubborn. She's not going to give up on you, nor let you give up on yourself.

I know I'm going to get hit hard for saying this next statement - you're dealing with a public health system and sometimes it fails the people its meant to help. I'm not saying the private health system doesn't also fail some people and sometimes private surgeons become money driven. The trick is finding one that's specialty is your need and I think Sonja's Dr Maale sounds like he might be able to help. I know there's going to be a cost involved but I think Sonja has said before not to worry about that and that she has some ideas. So lets get your hands on those scans and records and get them to Dr Maale.

I'll keep praying for you.

 

[Knitter4444]

I am as shocked as everyone else. My suggestion..don't even wait for the other opinion. Why couldn't he set it up while you were there? (That is not a question for you, just my frustration for what you are going through)

And of course Dr. Maale can't do diddley squat without seeing your scans etc. So if I may suggest that you do not wait for the next appt but call the OS office that you saw today and insist on your records. I have to believe that the team there may be threatened by you going outside.

Nat...I don't believe for 1 second that there is nothing that can be done. Please try to erase that from your mind. You need a fresh mind or minds..and I truly believe that Dr. Maale has other professionals that he leans on for difficult cases.

They are holding you hostage by holding your records. Why does this smell to me.

Do you have a lawyer friend. Just one that can send an overnight letter demanding your records. I know you are in so much pain that you have so little energy to even think straight..so please allow us to guide you a bit.

Lawyer..who will write a demand letter. I have to believe that there is a reason they don't want anyone else to see these records.
A letter should not cost much...see if you have a friend who knows someone who can do this. Not talking about litigation or anything like that..just get those records. Perhaps your husband calling would help but I would get someone of authority like an attorney to do this.

For all of us in the medical profession on these boards (and even for those who aren't) we are all stunned by this process.
Enough excuses from them. Get some support there Nat. You are not in condition to do this yourself.

I think many of us have logged on here all day to see if you have posted. Amazing that you have the energy for that.

We are here for you.

 

[RestAssured]

Yes, he is! I have discussed Nat's case with Dr. Maale, and he said, "With the amount of pain and the instability of the revision, I am willing to bet that they left some of the SC behind!" He went on to explain that all must be gone or it will ruin a knee replacement! Dr. Maale has dealt with people who have come to him and they had knee replacements and sc! He said in most of the cases they hadn't gotten all of the SC! He said you must be very careful and find every bit of it before closing, or it will grow and cause problems again! We will find a way to get Nat over here, if she decides she wants to come!

 

[RestAssured]

By the way, yes he does have a team approach to the way he handles each case! Nat, don't worry, his team is efficient, and he only has the best and brightest on his team. When he receives your MRI, scans, records, he will look at them, and if he doesn't think he can solve the problem himself, he takes it to the team. When I had my knee revision, I had a team of doctors. He covers every base and if anybody can help you he can! Get some rest this weekend! Monday we will rally the troops!

 

[Debbie_joints]

Natalie I feel so bad for you. Are you going to be able to make the long trip here to see Dr. Maale when you get your records? I went through a problem with my foot that one podiatrist tried treating for a whole year and he finally told me he was going to turn me over to one of his associates and I thought sure what will they do. Well, went in and she checked my records did more x-rays and gave me a cortisone shot and had me come back a week later. I went back and she wanted to know how it went and I told her that I was so mad. She looked up at me and looked kind of frightened and I told her that I wasted a hole year with that other podiatrist and you fixed me in a matter of minutes. So even though this is minuscale compared to what you are going through, maybe another doctor even though in the same practice can bring new light on your problem. I hope you can find the answers you need.

 

[karmigirl]

Natalie,
Please don't take this the wrong way, but what your doctors are trying to tell you is that all of this stuff is in your head. My friend it is not in your head it is in your knee, please please don't let anyone else try to tell you it's not. You must be very strong now. As I have said before it sounds like the system is trying to pull a fast one on you and by holding your records back from you is just wrong. Get those records asap and get them to Sonja, so she can help. I am only saying this to try and help YOU. Don't walk run.

 

[RestAssured]

Nat, I see Dr. Maale on the 15th of Nov. do you think that you will have the scans there by then? If so, get a release signed from your hospital if you want Dr. Maale and I to discuss your case. Otherwise, in the US, we have the HIPPA act, the patient's right to privacy and he can't tell me anything. If you put my name on the release he can talk to me. It is up to you, I am just a "shy" messenger!

 

[RestAssured]

Natalie I feel so bad for you. Are you going to be able to make the long trip here to see Dr. Maale when you get your records? I went through a problem with my foot that one podiatrist tried treating for a whole year and he finally told me he was going to turn me over to one of his associates and I thought sure what will they do. Well, went in and she checked my records did more x-rays and gave me a cortisone shot and had me come back a week later. I went back and she wanted to know how it went and I told her that I was so mad. She looked up at me and looked kind of frightened and I told her that I wasted a hole year with that other podiatrist and you fixed me in a matter of minutes. So even though this is minuscale compared to what you are going through, maybe another doctor even though in the same practice can bring new light on your problem. I hope you can find the answers you need.

I hope that is the case for Nat, but Debbie, they have been writing her off, and treating her like dirt for the two plus years I have known her, and NO one deserves that type of treatment! Nat, even speaking of amputation tells us how bad her situation is, but one of the UK's most respected consultants threw her to the curb today, and then threw her a bone by saying I will send you to an associate but I doubt there is much he can do either!

 

[RestAssured]

He wasn't keen on me seeing Dr Maale as he is worried I'm getting my hopes up and thinks I need to stop pinning my hopes on things and move forward.He also said he doesn't think any surgeon is ever going to be able to fix me.
He said he will do anything to help me he will refer me to whoever I want he will help get me to Dallas if that's what I want and once I have seen the new surgeon I can have all my records etc.
He was very upfront and sympathetic but that's the end of the line as far as he is concerned.

Interesting, on him not being keen on you seeing Dr. Maale! Dr. Maale has been over to England several times to do lectures on various subjects. I wonder if they met? How will he help you get to Dallas? I like the fact he didn't shut the door on the idea!

 

[Motorcycle Meemaw]

Natalie, I so sorry for all problems. I think Sonja can help you. She seems rather determined. I would sure want her in my corner if I needed an advocate! I'll keep you in my prayers!!!!!

 

[1ELISEA]

Add my sympathies as well. Medicine is a strange world for most of us, and dealing with it when our health is suffering can be agonizing. And Sonja is the best because she has traveled a similar journey.

I don't know if this would work on your side of the pond, but now when I have an xray or scan, I immediately do the paperwork to get a CD of it. They seem more accommodating to provide it when I ask at that time from the source rather than later when it has to go through the records folk.

For instance, last month I had digital x-rays of my spine and asked for a copy from the technician before she took them. I hadn't even changed back into my clothes yet and she was standing at the door with the CD in hand when I came out of the room. It took her less than 5 minutes to copy them onto a CD for me and I left with it. And those places that insist on paperwork, I fill it out at the front desk when I am checking in for the appt.

You mentioned a Rheumatologist too, right? Why not make a list of drs that you would like to see when you come to America and then make several appointments for that time frame. Also, if you have the funds to do so, I'd make second opinion appts as well. Dr. Maale sounds perfect, I am confident he can help, and we know what he's done to help Sonja, but why not also get a second opinion while from another dr in the greater Dallas area. Make the most of your visit while you are here. And perhaps Dr. Maale can provide a referral to a Physiotherapist who can evaluate and suggest certain exercises or other tools as well. Or maybe a Rehabilitation MD that can suggest things immediately that can help while awaiting a medical solution.

Just trying to make suggestions so that you utilize your time in America wisely as I know it will take a lot out of you to come. And yes, I too, believe you should come as soon as possible.

 

[NatalieMeadows]

Hi guys thanks for all your replys I'm really struggling today no sleep again and pain plus trying to get my head around everything.
I promise I will reply properly later xxx

Sonja you are an angel xxx

 

[Josephine]

How in the world can they hold YOUR records HOSTAGE! You paid for them! I can't believe what I am seeing.

Sonja, he can't release them because his colleague will need them. There is no conspiracy here.

He doesn't feel however that this is causing all my problems.He said my problems were awful and wished he could find a solution but doesn't think there is one, operating isn't the answer.

Well, that's his opinion and he's not an SC specialist!

He wants me to see a colleague of his Mr John Hodgkinson for a 2nd opinion in case he has missed something but he thinks its very unlikely.He doesn't want me to wait so that will be ASAP.

Well, broken link removed: https://www.wwl.nhs.uk/Internet/Consultants/specialist_services/john_hodgkinson.asp is no SC specialist either, just a regular joint replacement chap so I fully agree with your comment! Nat, did it ever cross your mind to say "Thanks but no thanks"? It's your choice you know.

He wasn't keen on me seeing Dr Maale as he is worried I'm getting my hopes up and thinks I need to stop pinning my hopes on things and move forward.

That's because a) he doesn't know Maale and b) he's worried he's going to get shown up!



BUT THIS IS THE MOST IMPORTANT BIT

He said he will do anything to help me he will refer me to whoever I want. He will help get me to Dallas if that's what I want and once I have seen the new surgeon I can have all my records etc.

Did you notice that, Nat? I think you need him to clarify that, the nuts and bolts of it. That's a big offer.

Sonja I so hope Dr Maale can help me but I feel so deflated I can't see anything fixing me anymore :( My fight has got up and walked away :(

I know it's tough and you've been through so much, but you KNOW that Dr Maale and all of us are just really rooting for you to get over there. You KNOW Dr Maale has you in his heart and his mind. He wants to help you and if you can just hang on a little longer, it will come to pass. There are so many of us praying about this, I refuse to believe that God isn't listening.