New Hippy with complicated story

[hernanu]

Well, from what I hear a MOM THR is very good, so getting an experienced surgeon who will do the right things will get you going well.

[nharsh]

Here is the next opinion I got. I must say as bad as the first one was I like it better than this one  :'(

Hi vicky,
THanks for sending the x-rays of this very interesting case.
surprisingly , the easiest thing to do from a pure technical standpoint is a hip resurfacing  with a dysplasia cup .
However the CMD neurological issues and metal allergy is a different ball game and I would be very reluctant to offer her any kind of surgery with this background.
I would be very interested to know what the other  surgeons think.

with best regards
vijay bose
chennai

[Tin Soldier]

Well you've already asked a couple of the best surgeon's in the world on HR, you might as well ask the others.  I've heard Gross looks at unusual cases, and you might check with Su in New York, Pritchett in Seattle has been looking at materials other than MoM for quite some time, might check with him.  Most of these guys go to the latest conferences and keep up on research.  I'd like to think that if they didn't know what to do, they would be able to tell you about a surgeon who has some experience with your type of issues.  I feel for you.  Keep looking.

[nharsh]

Thanks, I am still waiting to hear from two more surgeons that were sent my x-rays. I'm not sure who they are, I just know they are listed on this site. When I hear from them and find out who they are if it isn't the one's you mention I will see if Vicky can send my info to them. I will not give up, I know there has to be the right surgeon for me out there. I have a family to take care of and so much more I want to do with my life (not from a sitting position). Thanks for the info it all helps. Take care.

[Dayton96]

Dr. Gross in SC is pretty easy to approach directly.  He handles very difficult cases.  Vicky may very well send your x-rays to him.  If not, you could fill out his online form, put the x-rays in the envelope with it, and mail them to SC.  His web site is:

http://www.grossortho.com/ 

You could also send an email to his assistant, Lee Webb, at:

LeeW@midlandsortho.com

Good luck,

Mac

[einreb]

Don't think of a total hip as a big step down from a resurfacing... they can last a loooong time and you can be pretty active with them.  There is an argument that if modern bearing last our lifetimes and that if the neck is the weak link on an aging resurfacing patient... you may be better off with a THR if you don't mind giving up impact exercises. (trying to look on the bright side :) )

I think the de smet response is interesting.  I would guess that its a combination of what is technically possible (per Dr Bose), but what materials are appropriate in your situation (de smets suggestion of a ceramic).  I suspect that you'll have to nail down the allergy issue prior to surgery.

[nharsh]

Einreb, thanks for trying to be positive. I am usually the one doing that, but lately it's been kinda difficult. I am not in any way against a THR. I am for whatever they figure will be best for me. As far as impact exercises I can't really do any anyways due to other issues. Good thing God made me thin and tall. I do have to watch what I eat now as I am getting older and I can ride an exercise bike and swim. The allergy issue I don't know what else to do. The blood test is not covered by insurence and I would have to travel to the nearest place that does it. I'm not sure how much all that would cost but I'm sure I can't afford it. I also heard from Dr. Brooks and another surgeon that they had patients have the blood test come back positive for metal sensitivities and the people decided to go ahead with the surgery and have been just fine. So even if I could come up with the money I'm not sure it would be worth it. I think I should just stick with the ceramic like De Smets said.

Mac, also thank you for the input. I did just get a reply tonight from Dr. Gross's assistant. I have to admit I was very interested in hearing from this surgeon and I didn't really get much of an answer. I will past it here below. Thanks for Lee's email maybe I will e-mail him a couple questions I still have since they already have all my info and x-rays.

Hi Vicky,

Good to hear from you!

Dr. Gross said she is not a candidate for hip resurfacing with the reaction she had to the metal testing.

Best,

Lee

[Dayton96]

It seems you will have a really good list of questions to take to your interview with Dr. Brooks. 

Mac

[Pat Walter]

nharsh

I am sorry to hear about your hip problems and health problems.  I am sorry I did not comment sooner, but occasionally I am away from the computer.  I have done this for almost 5 years and take a little time now and then.

My one comment would be to listen closely to Dr. De Smet.  He is my surgeon and I feel on of the best in the world.  You just don't want to take any chances if you have allergies.  I imagine Dr. Brooks will not recommend a resurfacing either.  Too bad Mr. McMinn has not developed his ceramic resurfacing device further.  He has placed a few, but not many.  I would not want to take a chance with a metal on metal  MOM resurfacing.  I imagine Dr. Brooks will recommend a ceramic THR.  With all your previous problems, you don't want to have a revision any time in the future.

The new ceramic on ceramic THRs are large ball device that allow you to be active and normally without any restrictions. 

I would make sure that I use one of the top surgeons when you do your surgery.  It sounds like you need the best available.  If your insurance would pay for it - I would recommend flying to Belgium like I did and use Dr. De Smet.  Some insurances will pay for surgery in Belgium.

Please stay in touch and I will keep you in my thoughts and prayers.

Pat

[nharsh]

Thanks Pat, Funny you mentioned Dr. McMinn because I just got an opinion from him. I'm no sure what is an LTT's that he talkes about. Is it a blood test? I'm not sure that travel will really work for me or my family. I guess I'm hoping that Dr.Brooks is a good fit since he is close to home for me. And with the opinions of all these other great surgeons it will allow me to make sure that Dr. Brooks is the right fit for me. I guess if it comes down to it I would figure out how to afford to go out of the country and what to do with my kids. I will definitely stay in touch. I plan on posting every little detail of my journey to new hips however and with whomever that may be. Could you please tell me my options for blood testing for metal allergies? I have been told that insurance won't cover it and from what I've heard there not all that accurate either. Do you or anyone else reading this know much about that? I don' know if I should bother getting it done if I have to pay a lot for it and then have it not even be accurate. Maybe I should just play it safe and assume I am allergic to all metal. Thanks again Pat, hope you enjoyed your vacation. My husband is taking me to the Smokey Mountains for a few day the end of next week. We just need to get away from all this and relax for a few days. April 5h is the day I go meet with Dr. Brooks so I hope time goes fast till then. Wonderful site, you guys are all great.

Still waiting for that sunshine  8) Nicole

Here is Dr. McMinn's response:

As you know, Derek is on vacation but he says “She should stick with Dr Brooks who is an excellent surgeon. I agree she should have LTT's
I agree she is not suitable for resurfacing & depending on LTT results will probably be best served by having cementless acetabular shell (Titanium alloy) with acetabular bone grafting , crosslinked polyethylene liner or possibly ceramic liner, uncemented titanium alloy stem THA with ceramic head.”

[Pat Walter]

Dr. Brooks attends many of the hip resurfacing courses which Mr. Mc Minn also attends.  So they know each other.  All the top docs know who the others are too.  I had to look up LTT since I am not too familiar with all the blood tests.  Here is a page about it http://www.orthopedicanalysis.com/metal-allergy/metal-LTT_metal_allergy_testing.html  It is blood testing.  Not too many labs do that type of analysis and the top doctors know which do. 

I think you are getting some similar opinons about having a THR.  I would wait until you talk to Dr. Brooks and then make a decision.  Dr. Brooks is an excellent surgeon and I would consider using him.  I love the Cleveland Clinic.  They are number 1 in heart proceedures and I had my open heart surgery to replace my aortic valve last Aug.  Great hospital.  They are number 5 in the nation for orthopedics.  Still pretty good and Dr. Brooks keeps up with all the latest info.

Interesting info that doctors in the UK are called Mr.   as in Mr. McMinn, Mr. Traecy, etc.  It is a tradition that they are not called Dr.  Just a note for people who are new to the site.

Good Luck and stay in touch.  Pat

[nharsh]

I am so sorry, I had know idea that in the UK they did not use Dr. I was wondering why you typed Mr. McMinn, I thought it was just a mistake. Thanks for letting me know. Also thanks for the info about the blood test. I will check it out.

[nharsh]

Well tomorrow is my appointment with Dr. Brooks! I am so excited yet extremely nervous. Wish me luck  ;D. I will update on how it goes soon.

[svanci02]

Nharsh
I broke my right femoral head on in Jan and when I had my MRI they found that both sides where more than a 1/3 collapsed and the bones were soft so there was no chance of HR and I ended up with the Stryker (ceramic head) THR on both sides by Jason Cochran (Lansing Michigan, trained at Cleveland Clinic) these Stryker THR are lab tested for (estimated 30 years) only been out for a half dozen years so all you have are the studies that they have, I hated the idea of cutting that much bone but some of us are just not that lucky. I had horrible pain for many years and just thought it was something that you had to live with, so it is my fault for not checking into things when I first started having trouble.  I do not mean to ramble on but did have both sides done 28 days apart and I do not think that things could be going better, no pain just real stiff and after I walk a few steps that gets better fast. No pain is something that I would never be able to say again!! I am looking ahead to summer and being able to golf again, I went and bought new clubs already and I have a while before I can use them but know that I will be able to this summer. YES!!!!!!  I guess is what I am saying is that if you are not able to have HR all is not lost!

[lori.36]

Good luck tomorrow.  So exciting to be meeting the possible surgeon that will give you your life back!  Sleep well and horay the day is finally here!

[nharsh]

Surgery with Dr. Brooks on May 9th. Sorry it took me a couple weeks to post this. I knew it would be soon but May 9th is just around the corner and I have so much to do  :P Dr. Brooks is amazing and made me feel very safe in his hands.

[maxi]

great news ... not far away now....    :) :)

[phillwad]

nharsh

My surgey was done my Dr Brooks on March 18th - very please with how I feel and with his knowledge.  My 6 week follow-up is May 3 so I hope to be off teh crutches then

Good luck - Phill

[Dayton96]

Glad to hear you are so close to surgery.  Dr. Brooks and the Cleveland Clinic have an excellent reputation.  If you are not too busy after your surgery, I would to hear how it went and how you are doing down the road. 

Best,

Mac 

[nharsh]

Sorry it took so long to update everyone after my surgery. I had my THR and reconstruction done on May 9th at the Euclid Hospital of Cleveland Clinic by Dr. Brooks. He did my left side first because it hurt me the most and I will return to do the right one in about a year.
May 9th-- Got to the hospital about 8:30am. They got me right in to start all the paperwork and such. Then took my family and I back to get me ready. My family I had with me was my husband Joe, Dad Carl, and mom Mary. They waited in the family area while I got changed and IV started. The nurses were very nice and helpful. They got me all cleaned up and in my gown and got my family to come back with me. At that point my Pastor had gotten there also. We got to talk for a few minutes and then they came to take us upstairs. We got off the elevator and the guy said ok give your hugs and you'll see her after surgery. Well that was so quick we thought it would be awhile longer. So we said a prayer and gave hugs and kisses and off I went. By this point I got nervous. I waited in a room with about 6 patients and that is were the different doctors came in to explain everything and make sure all my questions were answered. I waited in there maybe 30 minutes and they off I went to the operating room. It was very cold and so much stuff and people every where. I remember thinking wow is this all for me? Like it was a party or something  :) A very tall man introduced himself to me and had me sit on the side of the bed and let my legs hang off. He had his arms over my shoulders and told me to lean forward for the spinal block and that he would hold me up. Thats all I remember, I don't remember feeling anything. The next thing I remember is waking up and shivering so bad even my teeth were chattering. They kept putting warm blankets on me and I felt warmer but I could not stop shivering and it was starting to hurt all over. They ended up putting something in my IV and I finally stopped shivering. The pain was hardly anything. I just felt so tired and I couldn't keep my eyes open. I kept dosing in and out. When I woke up in my room it was full of all my family, husband, brother, mom, dad, and oldest son. It was so nice to see them all. I still felt so tired and weak and could barely talk or keep my eyes open. Still know pain. I would just lay there and listen to them all talk and dose in and out. I finally came to for a while and then told them all to go home and rest. So with so hesitation they did. My husband however stayed with some friends that lived only 45 minutes away because we lived about double that. Dr. Brooks said the surgery went very well and he was pleased with the results. The nurses were all very nice and seemed motherly with me. I had a hard time all night with very low blood pressure and high heart rate and high temp. Again not much pain it was controlled my a morphine pump. I didn't get much sleep because they had to keep waking me up to do my vitals.
May 10th--First thing in the morning my blood labs came back and were very low so they told me I would need a blood transfusion. I tried to not get scared and they did a good job not making it a big deal but I was so scared. I got a hold of my husband and he came right back in. They could not get another IV in me so I had to stop my pain pump to get the blood threw it. It was not to bad and I felt so much better even after the first pint. Then I blew my IV and I was so upset. They brought in the best of the best and she got a new one in not to bad. Got my second pint of blood and back on the pain pump and got some sleep on and off. Physical Therapy came in and showed me a few exercises to do from bed with the bar they put up over my bed. They weren't to hard on me. I also accomplished my goal of getting out of bed and into a chair to wash up and change my gown. It felt so good to do that. I sat up for a little while and then was getting nauseous so they helped me back to bed. I ate a little but didn't have much of an appetite yet. Just slept a lot and drank lots of water.
May 11th-- After a long scary couple days of low bp, high heart rate, fever, and blood count to low I am back to normal. Well normal for me anyways lol. I had two pints of blood given to me and lots of vitamins and now feel so much better. I have so many holes from iv's and blood draws I'm not sure there is anywhere left. I have got up several times today for pt and exercises and yay I am now peeing on my own. I will be going to the rehab floor tomorrow and they'll help get me in shape. About one more year to do the other side and the waddling Nicole will be know longer. Pain is still not bad at all and I am so impressed. I thought it would be so much worse. I think for me the bad part is all the nausea and just feeling so drained. I also started to get a spinal head ache they called it and told me to try some caffeine and that did the trick for me. I am none weight bearing due to some of the reconstruction but am able to do the walker to get to the bathroom usually.
May 12th--So here I am in  my new room with a beautiful view of Lake Erie and the hospital garden. The room is much bigger and I have more room to put all my stuff (coupons). I will be working a lot with physical and occupational therapy to get my mobility and strength back. I am feeling a little stronger every day. I am still having nausea and not able to eat a whole lot. I am going off all narcotics so hopefully I will get my appetite back soon. I got to see my kids tonight and that was so nice. I miss them so much. I just wanted to keep them in the bed with me. So far all my labs are normal :) My bp is still low and heart rate is still up. They will redo blood work on Monday and go from there. My day is basically eating (some), drinking lots of water, breathing in this thing they gave me, pt, ot, going to the bathroom and doing more pt in my bed on the crazy trapeze looking thing I have attached to my bed, and I take naps between doing all of that. Good Night all!
May 13th--Well I can check yet another pain medicine off my list after puking my guts out from it :( But at least my room smells like spring from all my flowers I got and not vomit :) Starting to go down to the therapy floor today. Not feeling to bad yet but they'll be back later for round 2. Yay the sunshine is out! I just try to keep ice on at all times and drinking water. They will try another medication on me tonight. Still no BM :( Round 2 went pretty well with therapy. I learned how to do some things like getting dressed. I learned the correct way to move and not to move my hip. Also got lots of gadgets I call my tools. Looking forward to going back tomorrow. Tonight will try the new pain pill and hope I get some good sleep.
May 14th-- Well I did sleep good last night and had a hard time waking up. So far the new medicine is not making me sick. Still not much of an appetite. Pain is still under control with ice and prayers and for now Ultram. I had lots of therapy today just working on basic self caring tools and strengthening. They say I am doing very good. I feel better today and have been able to eat more. So far the Ultram is doing the trick it just makes me extra sleepy I think. On that note I am falling asleep so good night everyone. I'll try to keep ya posted and answer questions more now that I'm feeling better.