Anyone with Stickler's Syndrome? Need opinions please!

[martinbeef]

hello. i'm so glad i found this site. my husband is 51 years old and has Stickler's Syndrome. he needs two total hip replacements. because he is still quite active (we have a 300 acre farm), i started doing research on conservative approaches. (I am a nurse and know the risks with total hip replacemen). we like what we are reading on the hip resurfacing, but are wondering if it would be a viable option for him since he has Stickler's syndrome? Anyone out there with Stickler's? (it's a connective tissue disorder).

Also, any advice on a good surgeon in Greater Cincinnati, Ohio area?

God bless and thank you so much.   susan

[Pat Walter]

Hi

Welcome to Hip Talk.  I live in Marietta, OH and I traveled to Belgium to Dr. De Smet because I was older and many US doctors would not normally give me hip resurfacing.

I will suggest that if you husband has special problems, he seeks out one of the really experienced hip resurfacing surgeons.  They will not be in Ohio.  The most experienced ones I know in OH are Dr. Brooks with 200.  That however, would probably not be enough if your husband has a really special problem.

Dr. Gross in SC has done over 1300 hip resurfacings and many difficult cases. Dr. Su in NY has done over 500.  You can see both their info here  http://www.surfacehippy.info/listofdoctors.php

Dr. Gross will give you a free consutation if you send him an email and either attach the x-rays digitally in .jpg format or just send them to him.  He will call you on the phone.  Usually takes a couple weeks.

If you insurance will cover overseas, I would suggest Dr. De Smet of Belgium - my doctor - who has done over 3000 hip resurfacings.  He is one of the world's best and does many difficult cases.

You can email him and even Dr. Bose of India to ask about your husbands special problem. They will talk to you via email with very good info.

I just can't tell you how a connectiv tissue disorder would affect hip resurfacing.  I can't see how it would be much different for a THR than a hip resurfacing - but I am not a doctor.

You husband is still very young and I can understand that he would prefer a hip resurfacing.

Please keep in touch, check out my doctors list and let me know if I can help further.

Pat

[martinbeef]

hi pat. thank you for your kind reply.

with four children still at home (two in college), i'm afraid we cannot travel far or overseas. However i did some research and Dr. Michael Swank in Cincinnati (president of Freiberg Orthopedics and President of the Cincinnati Orthopedic Society, on staff at Univ of Cincinnati school of medicine) does hip resurfacing. we have an appt. to see him on june 17 and set a tentative surgery date. He viewed our films and said husband is a perfect candidate!

I read some stuff on Stickler's syndrome (which is very rare) and found a couple of articles from the UK in which Stickler's patients had hip resurfacing and doing well. There's just not much on the web.

What can we expect for recovery? What will be my role for the first week post op? (we manage a beef cattle farm and i am in school for my master's...so I am concerned about helping husband and managing other responsibilities). Any advice/comments are appreciated.

I will keep going through this site. it's great   thanks again.  susan

[Pat Walter]

Hi Susan

I wrote to both Dr. Bose of India and Dr. De Smet of Belgium about your question. Both agree a hip resurfacing is possible.  Here are their answers:

Dr. Bose

Regarding the second query, sticklers syndrome is cong. Progresse ophthamo- arthropathy. This is a rare disorder and the diagnosis itself does not preclude resurfacing. However one has to assess the joint involvement of the hips along with the other joints and make an assessment regarding suitability.


Dr. De Smet

[Koen De Smet ANSWER/ANTWOORD] there is not any reason why a Total hip should be preferred in stead of a resurfacing taking in accoun his disease


If Dr. Swank seems hesitant to give your husband a hip resurfacing, I would again suggest that you use a really experienced surgeon.  I will also tell you that many people have traveled to both India and Belgium alone to have their hips resurfaced.  Even a number of bi-lats.  I only mention it because it might be difficult to find a US surgeon that will do your husband.  I hope you can.  Look at my list.  I would also look at Dr. Gross in SC and Dr. Su in NY as possibilities.

Your husband is very young and obviously depends on his body working properly for working the farm.  So you want the very best outcome.

Normally, you don't have to do anything for a hip resurfacing patient.  As I said, many went alone to India and Belgium.  It is nice if you can help them, but they are able to walk, do stairs and move about by themselves.  We were taught to do stairs and walk the next day in the hospital.  This is very major surgery and your husband will be moving slowly, but able to move on his own. He may or may not have swelling, but can use ice for that.  I was on one crutch at 4 days and walking about 1 mile a day at 12 days post op. No crutch at 4 weeks with no limp.  Some people take much longer, while others follow the same recovery.

There is no way to predict his recovery.  I was able to driveright away since I had my left hip done. You husband will be very, very tired.  That is one of the biggest problems.  It took me almost 6 months to regain my previous energy level.  He will not be able to sit for long periods at a time since he will get very stiff and be uncomfortable. He probably won't be able to sleep well at nights for a number of weeks.  Many of us slept in our recliner chairs and took lots of naps.

Again, we are all different.  Much depends on your mental outlook - a positive approach is always helpful.  KNowing you have choosen a good doctor and knowing this is the right surgery for you is helpful.  KNowing that you want to get back to your active life as soon as possible helps - but you can't force your body.

I was in Belgium for 9 days post op after the hospital.  I stayed at the Holiday Inn with my husband.  We ate all our meals in the resturant, I walked the halls and was sight seeing on day 5.  I was with 8 others who had the same recovery.  So that helped me know what to expect and have others to talk with.  I could have easily been by myself.  Others were.

I wish you the best of luck.  Stay in touch.

Pat