New Hippy with complicated story

[nharsh]

I have a type of MD called Char-cot Marie Tooth (CMT) which is a Neuromuscular Disease. In most cases affecting hands and feet causing muscle deterioration,weakness, and deformities. In my case I went until the age of 22 without a diagnosis of hip dysplasia. I had an abnormal gate but it was always said to be from the CMT and no DR. ever looked any further. I had some pain in my hips like a charlie horse feeling and groin pain. When I was 20 I had a baby and that is when I got worse with my hips. I lasted a couple years and went to my orthopedic surgeon I see for my feet. He did some x-rays of my hips. He brought in a hip surgeon in the same practice and told me the bad news. So I almost immediately had a Chari Osteotomy done on both hips back to back. After all the physical therapy I still had an even worse gate and pain. I feel that it was a pointless surgery. The surgeon said I just needed to build up more muscle around my implants and eventually would need total hip replacements done. This surgery was just to help put some bone back due to having almost none left. So about a year later I start having more problems. My hip starts locking up and having horrible pain. I was told to take an anti-inflammatory and take it easy. It was just from inflammation. Then I get a rash over my scar and a soft lump. Then the lump popped open and had lots of yellow fluid and white string like stuff coming out. They said my body was rejecting the screw and they would have to remove it. No big deal though because the bone was all grown back. Shortly later the same happened to the other side. I have also had an implant in my toe that has been removed because of pain and it was coming out on its own. So now about 5 years after the Chari Osteotomy I need total hip replacements. The new surgeon sent me to have a skin patch test done for allergies to metal. About 2 hours after the patches were put on I end up in the hospital for several days. I started with a tingling in my left foot and numbing and then it moved up my left side and all throughout my body. My Grandmother pulled the patches off and called 911. I was told that it was impossible that this was from the allergy test. I lost the ability to move, could not speak right, had nausea and vomiting, headache, and just simply felt like I was dying. But after many tests and everything has been ruled out the Neurologist think it was a severe Neurologic Allergic Reaction to the test. Now I am waiting for my surgeon to call me when they develop a hip replacement with no metal of any kind. He won't touch me until then. I don't no how much longer I can go like this. I am in a lot of pain and can barley walk. I have chosen not to take narcotics with fear of all the side affects and not being able to care for my family. I am a wife and mother of two boys 11 and 2. I just keep getting the run around with the Dr.'s. I did just see a surgeon who is sending me to a Dr. Brooks at Cleveland Clinic and recommending I get a blood test done for the allergies. He says I won't last much longer walking. My hip sockets are so big and are pushed up so high they have moved my rib cage up. I have severe rib cage deformities so that must be why. I am doing some research on my own and found you. Your web site is fabulous and very informational. Please if anyone has anything to help shine some light on my situation I would be so grateful. If you have any questions or information to share with me please do.

[Dayton96]

I'm humbled by the strength you must have to deal with all of this.  I have little to offer except to say Dr. Brooks is one of the top ortho docs in the country, and the Cleveland Clinic is one of the top ortho hospitals in the country. As you probably know, this site also mentions other top docs in, and out, of the U.S.  If you are not happy with Dr. Brooks for some reason, then there are others, such as Dr. Su, who seem to frequently deal with difficult cases. 

You might also consider contacting Vicky Marlow through www.hipresurfacingsite.com/

Vicky is a volunteer patient advocate who seems to thrive on helping people with difficult cases.

Best wishes,

Mac

[nharsh]

So I called Dr. Brooks and had a nice conversation with his assistant Phil. I had to leave him a message but he returned it by the next day. He did a very good job at listening to me and answering my questions. I now have an appointment with Phil on March 1st. Dr. Brooks was so booked that I couldn't get in until May so I got in with his assistant first and then should be able to get in with Dr. Brooks sooner.
I asked about getting a blood test for metal sensitivities. Phil said that he will send me the information on a place called Rush University in Chicago. But it is not something covered by insurance that he knows of. So my dilemma is do I try to come up with the money to get the test done or not? Either way I need my hips done. So I think I'm going to meet with the Dr. first and then see what they say. If they can even do anything for me maybe there will be some options for me with ceramic. Even if I get the blood test and it is negative I think I would go with the least amount of metal as possible. Does anyone know anything about these tests and if there is a way to get it covered by insurance, and why are they not cover it? Is it not that accurate or something? Any thoughts or experiences please share.

[Dayton96]

My understanding is that a very small number of patients have an allergic reaction to the implant.  It is definitely something you would want to talk over with your doctor. 

Here is a thought for you, why not see if you can schedule another doc, such as Dr. Gross, Dr. Bose, or Dr. Clarke, while you are waiting for Dr. Brooks.  Both of them will do free consultations if you send them your X-rays.  The telephone consultation will happen a lot sooner than May.  In a sense, you would save time by getting a second opinion before you actually got your first.

Keep us posted on what happens.

Mac

[nharsh]

Great idea Mac. I am on it tomorrow  . I have to see if the Dr. who did my last x-rays can put them on a disk for me. Thanks for the good idea. I am not sure how much longer I can go like this, so any time I can save is good. Will keep you all posted. Thanks 

[nharsh]

Oh and thanks also Mac for the advise about Vicky. She is the one who is going to get my info to some other doc's for their opinions. She is very nice and also very helpful. Take care

[resurface]

nharsh

You have amazing strength.  Keep at it.  Question, are considering a hip resurfacing?

[nharsh]

well i'm not sure I have enough bone left for that??? i would love nothing more than to just get something done so i can continue to care for my family and not be in so much pain. i have learned a lot from this site and will hope and pray i can go the resurfacing route. i know what to ask the Dr.'s now and to get more opinions and do my own research. that is the key. but i also know the reality of my situation and until i meet with an experienced Dr. like Dr. Brooks (that i do have an appointment with) i will not know all my options. before this site i had know idea what a hip replacement really was and didn't know there were so many different kinds and ways of doing them. I will keep everyone posted and it will be interesting to hear what options i have and i may need all your help in figuring out what will be best. thanks so much to all of you! at least the sunshine is out today  i am so ready for some warm weather this cold is killing me.

[moe]

nharsh, I am truly sorry to read of your condition, hang in there and best wishes for a positive outcome, and some warm sunshine!......moe

[nharsh]

Thanks Moe, I did get some warmth and sunshine but now the snow is back. Hopefully not for long 
Anyways my appointment is this Monday Feb. 28th with Dr. Brooks. I am really praying that this is the surgeon who can help me. I am so excited and and nervous I can hardly stand it.

[Dayton96]

I thought you could not get in to see Dr. Brooks until May.  How did you manage to get your appointment bumped up?  Were you able to have any of the other docs look at your x-rays?

Mac

[nharsh]

Sorry I meant Dr. Brooks assistant is who I have the appointment with. It was bumped up though. They called me to change the date because of another surgery going on. I will see the assistant and if that goes good and he thinks they can help me I will be able to see Dr. Brooks sooner. As far as the other opinions go I have not got any yet. I have been waiting to get my recent x-rays from the last surgeon I saw. I hope they will be ready for me in the morning before the appointment because I need to bring them with me. My insurance won't pay for me to keep getting x-rays of the same thing over and over. But before I make any decisions I will get those opinions from some Dr.'s through Vicky. 

[Dayton96]

If a hospital took the x-rays, just call them up and ask for copies.  They can have them copied to a disk and ready for you in an hour or two.  If you tell them they are for a doctor, then the hospital will usually not even charge you. 

If the docs office took the x-rays themselves, then call them up and tell them you want a copy and will be by in the morning to pick it up.  I've never had a doctor's office refuse to provide copies of x-rays.  They are not always fast, but the longest I have had to wait was a week, and that was because the guy who usually took care of records was out of town. 

Good luck with your appointment tomorrow.  Dr. Brooks' office overlooks the lake.  It's a beautiful view.

Mac

[nharsh]

Thanks for the concern Mac. I did get the x-rays at a office and apparently they don't have the equipment to put them on a disk. They said I could sign them out up to 72 hours before my appointment and not be charged since they are the ones who referred me. The problem was stupid Ohio snow storms and every where was closed down including the Dr. office. They should have them ready for me as long as we don't get hit with more snow and they close. Vicky sent me directions on how to take a digital picture of them and send them to her. Thanks so much Mac, I hope it's nice and sunny out to see the view. I love the water.

[nharsh]

Such an awesome view from Dr. Brooks office. Especially today with all the ice. Anyways I seen Phil today (Dr. Brooks assistant). He was very prompt for our appointment. Took his time with me, I did not feel rushed at all. He explained everything very well and it sounds like he thinks I should be able to go the RESURFACING route. He needs to go over things with Dr. Brooks and will do a bone density test first. I am also going to get some other opinions from some of the other top Dr.'s listed on here. I want to make absolute sure whatever I do this time is the right thing and with the right surgeon. But I am very releaved to have finally heard a Dr. say I think we can help you and I think you will be very happy with the outcome. And for that I am so incredibly glad I found this site. Nothing is for certain yet until I here from Phil by Wed. at the latest. I am just relieved that they are going to help me and not refer me or send me home with know hope. Good night all I think I might finally sleep good tonight. Thanks so much 

[FlbrkMike]

Wow, that's great news!!  You must feel so relieved that there actually is a potentially good solution out there.

I hope everything works out for you.

Mike

[nharsh]

I heard from Phil on Wednesday last week. He went over everything with Dr. Brooks and showed him my x-rays. Dr. Brooks would like to meet with me because he didn't want to tell me over the phone. He does think he can do surgery and help me but felt it is going to be such a complicated surgery with risks and recoup out of the ordinary that he would rather I come back in to go over it all. Phil also said something about my pelvis being short or misplaced. I have mixed feelings right now. I am glad he says he can help me. At the same time I am so worried and concerned about the outcome of what he can do and what risks there will be and how long I will be out of commission. They are suppose to call me from scheduling and get me in within the next week or two. I don' know if I can make it that long. I is already now Monday the following week and I'm still waiting to get scheduled. I called once and they told me they were working on it. He is just so booked it's difficult. I did however manage to get my x-rays off to get some other opinions. Dear Lord give me patience and strength while waiting. I hate waiting and I'm not good at it. Ok well thats i for now. Hope they call tomorrow  

[Tin Soldier]

nharsh -Sorry to be a questioner here, but in your original post you mentioned a metals skin patch test that did not go well.  Do you know what metals they tested? and does Brooks know about the results of that test?  I'd would certainly discuss that with your surgeon.  All resurfacings right now are of the cobalt-chromium variety.  I have heard of some polyethylene and steel HRs like a THR, but I think those were done away with when the metal on metal HRs became popular.  I think there is some development in other bearing materials but I don't know if anything has been shown to work as good as the MoM.     

Also, every time you get an x-ray, see if you can get the images on a disk.  I'd say about half the offices I visited had digital and half had old-school films.  Once you get those images, make a few copies and then you'll be ready to send them to any doc, worldwide.  From what I've heard on this forum, most of the well-known surgeons will look at your images and contact you to discuss.  It's always good to get a few opinions. 

Good luck and use this forum, this is an excellent resource and the people here are all really supportive.         

[hernanu]

I feel for you. I don't think they would have told you they could help if it was untenable. As you said, you have a complicated case, maybe they are being careful to cover all the facets of the procedure. Hope you don't have too hard a time waiting, and that the talks go well. Keep us posted.

[nharsh]

Here is what Dr. De Smet's said after Vicky sent him my info and x-rays.

Dear Vicky, resurfacing is a real no here!
She needs a very experienced surgeon who will do grafting of the pelvis with her own femoral head and performs ceramic on ceramic, short stem is possible WITH correction of too high anteversion in the femur, and uncemented cup with screws.
koen

Fast response from him and I am very thankful for it. She also sent to some others so I am looking forward to what they have to say. His response is not really what a person would want to hear but at least it's something. Most Dr.'s I've seen just send me to someone else or tell me there is nothing anyone can do for me. I knew there had to be something and that's what lead me to this site and all these wonderful people to help me. Thanks so much guys.

Know news on an appointment with Dr. Brooks yet. I'm trying so hard not to call and bug them about it. I think I will check on things tomorrow if I haven't heard anything yet. Hope to get some more opinions about my x-rays before I go see Dr. Brooks. Take care everyone and thanks for the encouragement it means alot.