Looking for surgery for compartment syndrome- need drs names asap!

Hi everyone,
I am in my 15th month of living with this stupid compartment syndrome pain. I don’t think I can wait for the surgery another few months…feeling desperate because the pressure doesn’t even seem to be going down overnight. In the morning I step down and my toes feel broken. I can’t walk properly anymore.

SO- anyone out there who has had the surgery, can you tell me where you are and who performed it, then maybe I can look into just traveling- and paying for this so I can get back to my life!

Thanks in advance,
April

Where do you live? I’m assuming you’ve already seen an orthopedic and had the pressure test to confirm the diagnosis? Can’t your ortho do the surgery or are you just saying that their schedule is really booked and you’re trying to find a surgeon who can do the surgery sooner?

I live in Calgary, Alberta. I have had the pressure test. I have a surgery consult on March 10 but they said surgery wouldn’t happen until April! So I am feeling desperate…

I know a couple good orthos in Atlanta who I’ve seen for injuries and have been great. I actually had the pressure test by one recently when they thought I might have compartment syndrome - I ended up finding out I had a different issue. But with the travel and everything I’m not sure you’d be able to do the surgery much faster. I’m also assuming if you’re coming from Canada to the states for a surgery like this you would be paying 100% out of pocket? I’d be happy to give you their names and contact information but I am assuming you’re hoping to find another doctor in Canada?

Oh, the joys of Socialized health care…

Have you condered Mayo? You are also about equal distance from Denver/Springs/Boulder where there are some very nice centers with a high focus on active folks who want to do more than just sit and recover.

I was trying to search the Mayo site but could not find reference to compartment syndrome or fasciotomies…am I missing something??

I had this surgery recenly in the NYC area. If you are looking to go somewhere in the states, the guy I used was great. PM me and i will get you the info if you would like.

You know what Todd, it’s a long way potentially, but I will take the info! Thanks!

April-this may be a contrarian viewpoint but anybody who’s waited 15 months can wait one more month. Decompression fasciotomies are pretty much a routine ortho procedure that can be/and is done by most general orthopedists. When you weigh in the expense of travel, time away from home/work, etc. having the procedure done in an environment you’re already comfortable with may be best.

From a surgeon’s perspective, what about the small possibility of post-op complication, bleeding, infection, etc.? If this unfortunately happened, would you fly back to Atlanta, NY, Mayo each time you need something?

Why not swim, bike, and run as tolerated until you can get it done by “your” doctor? It’s just one person’s opinion. Good luck.

Hi John,

Actually my next “wait” is 9 months at this point. That is to get a second opinion for the surgery. In the meantime, I cannot run at all, and get symptoms just walking my dog. I have a lot of nerve pain that comes on- I guess that is part of what is confusing the doctors. I agree, I want to get it done here- and my doctor is going to work on moving this latest wait up- but in the meantime I am coping with a lot of pain.

Well, that’s certainly a long time. And what’s worrisome to me is that the symptoms you describe briefly don’t totally seem to mesh with compartment syndrome. I agree with the need for a second opinion and you seemed open to the Mayo Clinic. I know of one of their sports docs who’s actually published a few articles on the subject and be perfect for you, even though it’s a long way. His name is Mike Stuart, MD and can be reached via the Mayo Clinic web site. Here’s one of his publications:

Exertional compartment syndrome and the role of magnetic resonance imaging.
Lauder TD, Stuart MJ, Amrami KK, Felmlee JP.
Am J Phys Med Rehabil. 2002 Apr;81(4):315-9. Review.
PMID: 11953551

Sounds like he’s your guy! Good luck.

Wow, April 9 more months is to long to wait That is so sad, that you have to be put off so long. I’m sorry to hear that. You should check into the Mayo Clinic if you can.

I am walking more now after surgery. I have some relief with the nerve pain since taking Lyrica. Thanks for that advice. I can’t walk like I want to since I have the ankle issue. I’m going to check into ankle replacement now. Just get the education part of it as I heal for this condition.

I have so much trouble walking with this ankle, and I want to walk now.

I hope you find something soon.

Tammy

Hi Tammy,
Actually today I got the good news that I should be seeing the other surgeon within the month. I am so relieved…I have been respectfully pushing and pushing and today it paid off. I’m glad the Lyrica is working for you and you’re healing well! I’ll check in again later.
April

That is wonderful news April. Yes sometimes you have to push an be forceful to get what you need. Keep us posted, I’m sure everyone is pulling for you.

Tammy

How you doing April? I hope that things have finely moved forward for you. I’m not doing to bad, but not as well as I would have liked. The Lyrica really helps the nerve pain, but I can sleep at the drop of a hat.

I’m not sure how that’s going to work for me when I return to work. There are times work gets very slow, and being able to sleep as soon as everything is slow or quite is not good.

Hope all is well with you.

Hi Tammy
I am doing ok, still waiting for the second opinion. But- with the weather (finally) warming I am feeling much better. My doc says this is likely because in the cold there was too much blood going to the compartments and more pressure building. So hence more nerve pain and also compromised circulation so ‘cold’ pain as well.

Glad to hear you are trucking along…I know that Lyrica sometimes does knock you out a bit. I’ll check in again later!

I know when it’s cold I ache more in my leg even after the surgery, but not near as bad as before for surgery. Enjoy this time of feeling better.

Tammy