Infection, Hyper Coagulation, Blood Flow, Sympathetic Activity??
 

My daughter Sarah was diagnosed with RSD 5+ years ago following an ankle sprain. She began to have intense abdominal pain soon after RSD treatment was started; and following routine g.i. tests, she was diagnosed with internal RSD. Along the way, a physical therapist also mentioned that she has fibromyalgia. For the first 5 years of her illness, she had very few tests done because these diagnoses appeared to provide valid explanation for all that ails her. Also, most know that definitive RSD tests are hard to come by.

Recently, a doctor began to suspect that Sarah could have Lyme disease. She has had a “positive” test, although we are aware that this test can be indicative of other illnesses as well. We followed this up with an appointment with a Lyme doctor who diagnosed her with Master’s Disease, a tick-born infection that mirrors Lyme. In addition, the Lyme doctor ran lots of tests that indicate that she has abnormal thyroid and hormone levels. Yet another test revealed that she has hyper coagulation. We were told that this is the case in 95% of this doctor’s Lyme patients, in comparison to 5% of the general population.

While still in the process of investigating how to proceed with this diagnosis, Sarah had a test done that had been scheduled in the months prior to the Lyme suspicions. This test revealed that her celiac artery is not supplying her stomach with blood, resulting in yet another diagnosis, Median Arcuate Ligament Syndrome (MALS). The pain she experiences from this has been described as being similar to a heart attack of the stomach as blood flow is essential in food digestion. What these doctors believe is that Sarah has a ligament that is crimping off this artery, and they are recommending surgery.

Sarah's recent Lyme and MALS diagnoses, along with her RSD and Fibro diagnoses, have resulted in lots of unanswered questions and concerns on how best to proceed. Since RSD can affect blood flow, we realize that we must attempt to clarify if the positive MALS test could actually be caused by Sarah’s RSD.

ONE THING THAT WE HAVE COME TO REALIZE IS THAT IT IS REALLY VERY SCARY HOW WHEN A PERSON IS DIAGNOSED WITH RSD, ALMOST ANYTHING IS TOO EASILY EXPLAINED AWAY AS RSD.

For the past two weeks, Sarah had very extensive testing done, more tests than she has had over the entire course of her illness. Follow up tests looking for chronic infections are still pending, but Sarah has again tested positive for hyper coagulation, often associated with infection. She also has had tests that show nerve damage in her back, as well as lots of ligament damage in her joints (Sarah is very hyper mobile). Of interest, she had thermo graphic testing that shows sympathetic activity in the ankle that resulted in her RSD diagnosis, but strangely she has not had pain in that ankle since 2005. (THE DOCTOR IS RECOMMENDING A NERVE BLOCK TO ADDRESS THE NERVE DAMAGE AND SYMPATHETIC ACTIVITY. WE HAVE VERY LIMITED KNOWLEDGE ABOUT BLOCKS, SO ANY ADVICE IS MOST VALUABLE) Confused and overwhelmed, that we are!

ANY WORDS OF WISDOM FROM THE MEMBERS OF THIS WISE AND EXPERIENCED FORUM WOULD BE VERY HELPFUL AND MUCH APPRECIATED.

Jenno,

Check the forum (search). There is a lot of information on blocks here already. I wouldn't know about blocks, because I have never had one done.

Maybe someone else can chime in.

Thanks!!!
 

Thank you Marlene, I will search for past posts regarding blocks. I am also interested in learning more about precautions that can be taken to avoid RSD complications associated with surgery. I will do a search for that as well, but if anyone has and good advice, I very much welcome that as well.

The decision wether or not to have surgery will come down to us, as no doctor will want to make that absolute call. The doctors who have diagnosed MALS believe that Sarah's abdominal pain will resolve with surgery and Sarah's family & pain doctors are cautioning against rushing into surgery since she has RSD. I am the queen of indecision so this is a very painful process given that the stakes are so high.

It is a decision requiring lots of prayer to be sure!!

Jeanne

Jeanne,

Tough call. I wouldn't know what to do when faced with the choice myself. I don't know if there is any information on MALS surgery and RSD. I doubt it, but don't give up looking. OMG... If even the doctors aren't sure... then what?

Jeanne,
You are right the decision requires lots of prayer and research! I am sorry that you are facing such a tough decision. When our children are hurting it makes you hurt and feel helpless.

FYI my experience...
I have RSD left leg fully involved. I need another surgery on my knee but my Ortho said right now surgery would only send the RSD area into total craziness. I even have fluid on my knee right now and they don't even want to drain it because of the RSD. They want to wait to see if they can get the RSD to calm down some before any invasive procedure. My Ortho has consulted other specialist to make sure that he fully understands RDS and the effects of surgery and RSD. He explained that you run the risk of sending the RSD into overdrive.

I had a diagnosic sympathetic block last week and it went really well. PM doc was able to identify the nerves that was causing my leg to be so cold (slowing blood flow to my leg). The block raised the temp level in my leg/foot to 91degrees for 5 hours. It was a wonderful feeling and I was amazed at the relief I felt. I am going to try the next step and have the series of blocks to see if I can get any lasting relief.

I know everyone is different and my PM doc said some people do well with Blocks and other don't get any benefits. I hope this helps.

My thoughts and prayers are with you as look for guidance.
AJ

Hi Jeanne,

May I ask, what type of block is the physician recommending? Is this doctor connected to and consulting with the other physicians who are treating Sarah?

There are precautions that can be taken for people who have surgery with RSD. Did the physician who is recommending the surgery have any suggestions for Sarah's specific case?

It sounds like you have quite a few doctors involved here and you may have already done this but if not you might try to get all of her attending physicians connected so that they have a better understanding of the complications of Sarah's case. Not an easy feat I'm sure but with today's technology and perseverance from you it can be accomplished.

I've been thinking about you and Sarah. I know this is a very scary time for you and I'll be praying for you all.

MsL

The 8th bold heading down the page has a few articles on rsd and surgery. RSDSA Library.

I recommend the 2nd and 4th article specifically for surgery precautions.

As you'll see there are also many other articles that may give you info on things you hadn't thought of. :-)

Hugs,

Karen

Thanks!!!
 

Sarah and I just returned home yesterday after being away on our 4-week medical adventure. Sleeping in ones own bed does work wonders, making the challenges of the day somehow feel less overwhelming. Our time away did yield lots of new information to consider, and we are praying that good things will come from all that we have learned.

Thanks for the responses to my post. Strangely, after almost six years of dealing with RSD, our knowledge of the more typical treatments is really very limited since hyperbarics have become the mainstay of Sarah’s treatment routine. At the same time that the doctor was advising blocks, I was reading on the forum that these need to be done with flouroscopy or there is the risk of nerve damage. Sarah did have one, an injection in her back, with no apparent benefit or problems.

When dealing with this illness, FEAR CAN BE QUITE PARALYZING given that the consequences of bad treatments and decisions can be so devastating. Still, I have to remind myself that DOING NOTHING AND ALLOWING FEAR TO STOP US FROM MOVING FORWARD CAN BE EQUALLY DEVASTATING. It is really quite exciting to realize that surgery could actually help Sarah immensely. WE PLAN TO CAUTIOUSLY MOVE FORWARD, CONTINUING TO RESEARCH, AS WE PRAY FOR GOD’S PEACE AND GUIDANCE.

Thanks again for your help.

Jeanne