Health Organization for Pudendal Education

I wanted to share with this group a doctor I saw last week, Dr. Aradillas in the Neurology Department at Drexel University in Philadelphia, PA. Excuse the length of this post but I wanted to share with you a portion of a handout they gave me.

Dr. Aradillas is a neurologist specializing in pain with an emphasis on patients with Complex Regional Pain Syndrome (CRPS). I know this group isn't focused on CRPS but I thought I would share some of what I've learned because I believe it could potentially help someone who continues to be refractory to treatment. That this refractory to treatment might be due to an autoimmune disorder that is attacking the sensory nerve fibers.

No one understands why an individual develops CRPS. What they do know is that CRPS is a disease of the central nervous system and there is a loss of the pathway that inhibits the pain signal in the central nervous system, therefore, the patient always feels pain. Because of this baseline level of pain it is important to treat any other pain generators because these other sources are like adding gasoline to a fire.

Below I have copied a section from a handout Dr. Aradillos office gave me.

“In many of these patients we have found multiple conditions that can case chronic pain, and when we do find something we try to treat it separately from their CRPS because there is evidence that shows:
1. Any pain from any condition or cause will activate the “normal” processes that lead to the experience of pain. In the majority of patients who suffer an injury these processes eventually “calm down” and the pain resolves. In patients with CRPS these processes do not stop and eventually become chronic and the pain continues. One of these processes is the activation of the immune system.
2. If a patient with CRPS develops a chronic pain condition on top of this CRPS this condition will trigger (for a CRPS and a non-CRPS patients) these immune processes.”

In patients who suffer from CRPS this extra chronic pain condition will:
1. Contribute to maintain their CRPS by triggering the “normal” processes of pain in the spinal cord and brain.
2. Can potentially be more painful than for a patient without CRPS
3. By triggering these “normal” processes in the spinal cord and brain can make the infusion less efficacious because the on-going input of pain into the spinal cord will block the receptors in which ketamine work and will leave virtually none left for ketamine to go through.

These extra pain generators cause a wide variety of symptoms. … Some of these patients can also demonstrate a pattern consisting of pain on all 4 extremities, worse at the hands and the feet with a distinctive burning quality. This could mean that they have developed a neuropathy, specifically a small fiber neuropathy (SFN).
1. If we take every person in the world with burning in the hands and feet (neuropathy) the most common cause would be diabetes mellitus (even in these patients the cause seems to be activation of the immune system). The second most common cause is liver disease… The third most common cause is an autoimmune disease, any autoimmune disease can cause a painful neuropathy.
2. It has been shown that patients with CRPS have an elevated level of “inflammatory proteins” circulating in their blood stream, the reason for this is still unclear.
3. Patients with painful neuropathy (from an autoimmune, diabetes, liver, etc.) also have shown to have elevated inflammatory protein profile in their blood.” End of the portion of the handout I’m copying.

Dr. Aradillas found that I have developed this small fiber neuropathy (SFN). It is easily tested for on physical exam and by skin biopsy. Dr. Aradillas has found for patients with CRPS plus SFN that treatment with platelet plasmapheresis reduces pain in about 87% of the patients. During platelet plasmapheresis the plasma is removed and plasma contains protein. Antibodies are proteins and the antibodies that are attacking the sensory fibers are removed during this process. Albumin is given back to the patient to replace the protein that has been removed. Dr. Aradillas has also found that ketamine infusions effectiveness is greater if patients have undergone platelet plasmapheresis.

I will return to Drexel the end of August for medical clearance for inpatient ketamine. Once I receive medical approval I will undergo platelet plasmapheresis prior to my 5-day inpatient ketamine infusion.

Thanks for this interesting info, NYT. Are there any side effect concerns with either the ketamine or the platelet plasmapheresis? Wishing you all the best with your upcoming treatments!

Violet

Many institutions that use higher doses of Ketamine require a neuropyschiatric and cardiac evaluation. Ketamine at moderate to high doses gives hallucinations and is contraindicated in patients with PTSD. Medications are given to help decrease hallucinations. It can also cause cardiac arrhythmias and is contraindicated in anyone with underlying cardiac disease. I know on this forum that individuals with IC find that Ketamine does a number on their bladder symptoms but it is not something that is asked. No one knows the long term effects of using Ketamine for CRPS treatment. I'll let you guys know

Platelet plasmapheresis increases susceptibility to infections, can increase the likelihood of bleeding, low blood pressure, and muscle cramping can occur.

NYT it's TCB. Good morning! I am wondering how you are doing after your treatments in Philly? I'm hoping you had great success and if not we always know there is HOPE for a cure for CRPS and PN during our lifetimes. Dr. Aradillas also diagnosed me with the CRPS and SFN and we were going to ask my insurance carrier if they would kindly allow me to get treatments along the lines that you mention but that is when Dr. Aradillas was transitioning from Drexel to Vincera, so everything got put on hold. I'm very interested in hearing from you so please please let us know how the plasma exchange or any of the other programs in Philly worked for you. I'm doing quite well on Ketamine and Lidocaine infusions but have put off returning to Philly because I am tired of fighting with my Insurance carrier over every single CRPS/ PN and SFN treatment. I finally won my appeal ( thanks to Dr. Aradillas and his nurse Lynn for my letter of medical necessity) but our carrier (Aetna) wrote me a long letter saying you prevailed in external review but we are going to limit your treatment and we will only authorize certain things under certain circumstances for a limited time period. I felt I had no hope of getting them to pay for plasma exchange or IVIG with my diagnosis so I gave up because I simply can't keep fighting for each and every dime. Fighting for coverage is both physically and mentally hard on me and my family and I can no longer devote energy to writing appeals litigating everything with the very industry we pay during our working years to help us when we are sick and down. I'm truly sorry that the CEO of Aetna has been diagnosed with CRPS but hopefully his diagnosis and experience with CRPS will help him understand that we are all human and we all deserve to get treatments regardless of the rarity of our disease condition or position in life. I used the analogy in my appeals that if I had cancer you ( Big Insurance) would pull out all the stops and spend policy limits to save my life but I have CRPS and PN and SFN which you don't quite understand so you write policy bulletins saying you will deny treatments because they are in your opinion not medically necessary and experimental. We are not experiments, we are humans and patients just like you with serious and debilitating disease that has been recognized since civil war times so please help us if you can!

TCB, I also got caught when Dr. Aradillos left Drexel and went to Vincera Institute. As soon as I was able to make an appointment to see him at Vincera I was able to see him in Dec 2016. When I saw him, we decided to change our treatment strategy and not do platelet plasmapheresis, for a variety of reasons. I have been reluctant to have a small fiber nerve biopsy because every time I'm poked, even for an IV for my infusions now, I get discoloration in the limb. Small sores I get on my feet take forever to heal. However, after my last visit and saw his new PA (Lynn has left) I will have the SFN biopsy on my next visit to Vincera.

Last year I did a 5-day inpatient Lidocaine infusion followed by 5-day inpatient Ketamine. I did the booster protocol and still receive both Lidocaine and Ketamine, on an outpatient basis, every 8 weeks. The lidocaine infusion did wonders for my bladder and hand spasms. The ketamine helped with the pain and muscle spasms. My pain is much better controlled since my inpatient and the frequent outpatient infusions.

If you are interested in speaking with someone who does platelet plasmapheresis for SFN I have a friend with CRPS/SFN who also sees Dr. Aradillos who has this done just PM me.

I've been very impressed with Dr. Aradillos. At my visit in Dec 2016 he was concerned that I had yet to be found structural damage in my pelvis from my hysterectomy and bladder sling. I saw the surgeon Dr. Poor who knew right away. After a specialized MRI they found I have athletica publagia, parts of the adductor muscles of the legs and rectus abdominus muscles had been torn off the pubic bone, plus chronic changes to the pubic bone from unevening loading over the last 9 years. Needless to say I was thankful for the diagnosis since I've had a triad of symptoms that I've complained to every doctor I had seen but took 9 years for the diagnosis. Due to all the years that had passed the surgeon and I were on the same page that surgery was probably not a good options because the muscles could be too retracted after all these years to re-attach to the pubic bone. Dr. Dellon was the only doctor who came even close to thinking this was one of my problems.

The other thing that was found on the MRI was a pudendal neuroma at the right ischial spine. Potentially, it could also be a lump of scar tissue or neurowrap but the radiologist thought from looking at it that it is most likely a neuroma. Explains why I still complain that sitting on my right side is still painful, radiates into my leg and groin. I'm taking an alternative avenue, started going to the Functional Medicine Center at the Cleveland Clinic. One of my goals is to see if we can get my CRPS settle down enough that I can have surgery to have the neuroma removed. At the moment the risk to reward to have the neuroma removed is just not there.

NYT,

Thank you for your kind reply. You have been through so much and you are still up here helping people every day! My hat is off to you for being so kind THANK YOU! I would love to hear how your friend is doing with her plasma exchange protocol. It sounds like you and I are both on the same or similar program with IV's every 8 weeks following the inpatient protocol. My CRPS continues to spread and it has consumed 80% of my body now over some 40 years. It was such a relief when Dr. Aradillas diagnosed me and wanted me to go inpatient ASAP. It worries me that I'm not doing enough to keep the CRPS under control while we wait for a cure. We all worry about the disease getting into the organs but we must go on and stay busy and keep positive or we will be consumed by this dreadful condition. I would say to all those who have not developed CRPS to get to the right physicians early and get your pain under control so that it does not progress into CRPS ( if you are prone to developing it which most of us are not) which makes it much harder if not impossible to treat. I will keep doing my booster infusions and consider getting back to Philly to see Dr Aradillas and stay in touch. I now have a torn meniscus in my right knee and I need to ask them if they can fix it so that pain can settle down some day.

I hope everyone who sees our posts will take a minute to go to the RSDSA website and learn about CRPS and pass it on so that anyone showing symptoms can get in and get treated right away and not end up like us. I owe a great deal of gratitude to all my doctors for believing in me and offering to help despite the lack of knowledge about CRPS. God bless everyone suffering with pelvic pain and we pray for all of you every day and wish all of you a speedy recovery or pain management that gets you back up and moving and enjoying your days to the best of your ability. TCB

Hi nyt,

I was just rereading your entry from June of 2015 regarding the role of autoimmune diseases in pain. The handout you quoted says that burning in the hand and feet (which I gather is the definition of neuropathy?) can be caused by any autoimmune disease. Do you know if that link is restricted to burning in the hands and feet? I do not have burning anywhere except my pelvic floor, but I do have two autoimmune diseases (but not ones you would associate with nerve pain, such as ms or diabetes), so I'm just wondering if there is some connection. Last year I also had a frozen shoulder (inflammation in the shoulder capsule) that developed spontaneously, something that is (I was told) more common in those with autoimmune diseases. So, I'm just wondering what you or others know about a connection between pn and autoimmune diseases (beyond ms and diabetes). Do you know if there are blood tests that can give you the inflammatory protein profile that was mentioned in the handout?

April

Hi April,

Small fiber neuropathy is defined by burning in hands and feet in a stocking and glove pattern distribution, it is confirmed by a biopsy. The small fibers can be injured in other areas of the body but would not be consider the "classic" small fiber neuropathy that is defined by hands and feet distribution but a doctor would call it neuropathy.

The first lab test that is done to look for inflammation is C-Reactive Protein (CRP). Mine has always been normal. Both Dr. Aradillos and Dr. Young (a physician at the Center for Functional Medicine at Cleveland Clinic) have run all kinds of different lab tests on me. For example, the typical labwork for Lupus and rheumatoid arthritis which was normal. The one that was abnormal and very high was Transforming Growth Factor Beta 1 (TGFB1) which is an indication of autoimmune disease. Some Dr.'s will also draw Tumor Necrosis Factor alpha (TNFA) but I've not had that done. Dr. Young had some specialized labwork done by a company called Genova Diagnostics and one of the tests was a comprehensive stool profile and metabolic panel. The stool profile and metabolic panel showed that I have inflammation. The labwork indicated that I have significant absorption issues which they think is a combination of my chronic health conditions and genetics. If you are interested in all the different labwork I have had done I can PM them to you.

Hi nyt,

Thank you so much for the info. So the handout was discussing factors related to a specific type of neuropathy. I don’t have any burning in my hands or feet (or anywhere else beyond my pelvic floor), so I doubt I have that autoimmune disease. Thank you for the offer to give me more info on the lab work. There’s no need now, but if I do have further questions, I’ll pm you.

Many thanks,
April

NYT,

I would love to contact your friend that has been through the plasma exchange program with Dr. Aradillas so please let me know how I can get in touch with her with her if she is willing. I am doing really well on my booster IV therapy every 2 months but I fear my immune system is taking over because my disease has been spreading rapidly over the past few years and my feet, hands, back,shoulders legs and pelvis are burning around the clock. If I could talk to your friend I could get an idea of what it would take for me to get myself back to Philly and ask Dr Aradillas if the pheresis program could help me. I am enjoying life despite my illness but always thinking I'm not doing enough to to battle this disease that just keeps getting worse and never goes away. Again THANK YOU so much for all you do for those of us who visit this site. I know you said PM me but I'm not sure how to do that. My wife INDY wants to help so please do let me know what to do so I can find out if Pheresis followed by IP IV is something that is feasible for me.

TCB