Any Experts or experience with foot wounds and MS

[krumban]

My Father has Chronic, progressive MS for 23 years. He is wheelchair bound - and is plagued by recurring foot wounds (ulcerations that open up). It typically starts in the Fall and continues through the Spring (I don't know if there is any correlation to the weather or not)..

He has been doctoring for numerous years with a pain management clinic. This past year - a local dermatologist took scrapings from the scabs on the wounds - and determined it was fungal.  Now he has been diagnosted this year by another dermatologist at Hershey Medical Center with "Livedoid Vasculopathy".  He is now being treated wtih Clobatasol (steroid) and also Lidacaine (pain). He could not tolerate Cloabatasol (turned his feet blue) and can't take the Lidacaine - screams in agony if applied or even applied to gauze. All of this of course, sends him into extreme spacticity.He is in so much pain and agony. The pain is making him very weak. He is taking various pain killers, Requip, etc to control the pain.

I am just desperately trying to find anyone who might be experiencing/experienced similar foot/circulatory issues and what was done to try to remedy. OR alternatively looking to find any expert - who could consult even remotely with the Drs,. at Hershey Medical Center.

Many thanks for reading this post.
Regards, Ann

[twopack]

Just wondering how the two of you are doing and if you've had any success finding new docs and/or treatment options.

You are thought of often.
Mary

[twopack]

I would continue to try and find a doctor who has experience treating this condition.  I would think a major wound care center would be your best best.

Have any of the doctors said if they think your father has clotting problems with his livedoid vasculopathy?  Have they tried giving him any drugs to prevent slow flow or clotting?  Coumadin or low-dose heparin?  Maybe even something like Trental or Persantine?

I'm not too surprised if he doesn't tolerate lidocaine.  It can (and does) burn like the dickens on open wounds so doesn't sound like the best choice for an ulcer.  It might also be causing blood vessels to constrict.  That won't help if clots or stagnant circulation are already a factor.

The ulcers of livedoid vasculopathy are known to be cyclic in nature.  Dad may improve again come spring but I think I would be looking for a doc who wants to work on healing them "out of season".  Hyperbaric oxygen treatments might have a shot at working if you can locate a wound care clinic with a chamber.

Your dad is fortunate to have someone like you to love him and advocate on his behalf.  Keep searching and asking questions online.  You are right that you may be able to find a doctor who will consult with your local docs via phone or web.  It's not that unusual these days.

By the way, this condition is associated with diseases like lupus (SLE) and antiphospholipid syndrome (APS).  I wonder if there is any chance your father has one of these autoimmune diseases in addition to MS.  If so, a rheumatologist might be able to help him too.

Good luck to you both and may relief and healing be headed in your dad's direction.  Please do let us know what you find out and how Dad does with this.

Mary

[krumban]

Thank you for all of your comments -  will keep you posted on any learnings or outcomes we have. He is terribly discouraged between the pain from the open wounds on the foot from presumabley the "livdeoid vasculopathy" which then brings on the spaciticity.  He has pain management via balcofen pump, lyrica, pain meds, etc - and nothng seems to be cutting the pain. We are all working hard (my entire family) to try to get those open wounds healing  - so that he can have less pain. Many thanks for all of your responses.
Regards, Ann

[LisaJF]

I'm certainly no expert, but I will say since you mentioned he is wheelchair bound, then pressure is exerted on pressure points on his feet.  If he has spasticity and his foot is pressing on certain aspects of his foot (ie: lateral/side, heels, ball of feet, etc.) then what that does is decrease blood flow to that area and can cause ulcerations after consistent pressure.  It is even worse if his protein levels (albumin) are low.  It would make sense that in the fall throughout spring he has the most difficulty because of the weather changing to cold (unless you live in florida or some state that is constantly warm -- then I can't explain it) but my thought process on this is the mere fact that cold constricts the blood vessels in addition to pressure exerted on the pressure points on a consistent basis and presto.

Healing is quite hard to come by if he does not relieve those pressure points or have booties to put on to alleviate heels or side of feet or wherever the pressure is placed.  

Pain control is quite often hard to figure out, but during his dressing changes, I am sure whoever is doing them premedicates your husband before hand? (I'm assuming).  

I know nothing about the disease he is diagnosed with "Livedoid Vasculopathy"...I would have to look it up and get back to you on that one.

Perhaps your husband would benefit from seeing a Vascular doctor who specializes in arteries and veins.  I'm just throwing that out there.  Perhaps a nutritionist to ensure his protein levels are "at" or "within normal limits" which would help in the healing process.

I'm sorry I could not be of more help, but I wish you and your husband the best of luck in finding someone to help his situation.  

I think pain management consult should be initiated as well if he doesn't have that already.  

Lisa

[Lulu54]

Ann,
Of the top of my head I can't think of anyone here who has had a problem with this type of wound.  Interesting that it correlates to the weather when we begin to wear socks, our feet are enclosed and don't get as much opportunity to breathe.    It is also the time when our heating systems are starting to work and the air in our homes tends to be so much drier.  

Like Alex, I'm just tossing out ideas that a coming to me.  It sure sounds miserable for your dad and I hope you can find some relief for him.  Keep advocating - I know that can be difficult when it feels that it's not going right, medically.  
there has to be a doctor out there who can help with this.

Lulu

[HVAC]

That is terrible. It is hard because there are several issues. I would think getting to the best wound care specialist you can find might be the way to go. May be someone who specializes in burns or diabetic wounds which are caused by lack of circulation and pain? I am just throwing things out. You might have already been down this path.

Alex