ESWT Treatment Experience in Cornwall

[Faith]

It’s been a little over 11.5 weeks since my treatment with Dr. Andrew in Cornwall Canada. I underwent 5 days of intensive extracorporeal shockwave therapy (ESWT) and active release therapy (ART). As others have said, it was the most painful experience of my life. I knew going into it that the pain would be bad, but nothing could have prepared me for this.

Unfortunately my outcome has not been as favorable as others as I am worse overall from the treatment. I have new pain (which I will discuss more later) and an increase in my normal pain. Even increasing my Neurontin dosage has only helped minimally. Most days of the week I have to take PRN pain meds (which I did not do prior to Cornwall) and especially if I try to leave the house to do anything. I have followed the post-treatment instructions – stretching (though I do wonder about the benefit of stretching when there are still trigger points shortening the muscles), taking warm Epsom salt baths, vitamins, PT, etc. but I have not been able to come out of this “flare” and I am afraid that I may be worse for good because of this treatment. To give you an idea of the aggressiveness – I was left with huge bruises and a hematoma on the pelvic floor that just recently has pretty much dissolved.

I was the last patient to undergo ESWT by Glenn Cameron, the massage therapist Dr. Andrew used to use. The night before I was to see Dr. Andrew he told me that he was just going to treat me himself and that this would make the treatment much more affordable $3500 instead of the quoted $5000 (I say quoted because the actual cost of my treatment was $5700 + about $200 in international credit card fees – if you plan to see Dr. A be sure to get the cost in writing as I was very frustrated at having to pay almost $1,000 more than what I was prepared to pay). Dr. A said that there was some differences in business practice with Glenn and himself and that he would be most likely leaving Glenn. I didn’t know anything about this of course, so I trusted Dr. A and was happy to be saving some money. However, the next day Dr. A said he changed his mind and decided that I would see Glenn as planned for the ESWT. I had heard from others who had gone before than Glenn was the best and of course I wanted the best, so I felt like this was probably better (at the time). However, after returning home and learning that Dr. A and Glenn “split up” only a week after I was there was very frustrating. Had I have only waited I could have saved A LOT of money (this was the reason Dr. A decided to leave Glenn – to make the ESWT more affordable as Glenn had older models of the ESWT machines and his own business to run so he charged much more than Dr. A would have to).

I was surprised to find out that the ART was MUCH more painful than the ESWT. The ESWT would burn in some areas (the areas with nerve involvement is my understanding), but the ART just felt like I was being ripped apart (especially on the pelvic floor – obturator/alcock’s area – one time I even had to ask Dr. A if I was bleeding as it felt like my vagina had been ripped open!). Glenn would stop when you said stop, but Dr. A would keep going – saying “one more time”. It was hard. I couldn’t have done it without my husband. I tried deep breathing and distraction (watching videos of my daughter and listening to music), but it was a lot like childbirth in that the pain was so overwhelming it was all encompassing!

I wanted to share some of the strengths, weaknesses, and my personal opinions of the Cornwall protocol:

Strengths:

1. Dr. Andrew is extremely personable. He makes you feel comfortable. He spends lots of time with you to answer your questions and he is very knowledgeable. My treatments were about 2-4 hrs long (about 1-2 hrs with Dr. A and 2-3 hrs with Glenn) and they were conducted in the evening beginning at around 7pm after Dr. A had worked all day and he travels between Ottawa and Cornwall). I think he genuinely wants to help PN patients and is willing to do whatever he can to help.

2. Dr. Andrew is empathetic – being a former PN patient himself and having developed this protocol through having this treatment himself – he understands a lot of what the patient is going through.

3. Dr. Andrew’s follow-up care is very good. He called or we emailed almost every week, sometimes more often. He was quick to get back to me with my questions. Which is very nice compared to some doctors I have seen, such as Dr. Hibner, whose office staff is very difficult to communicate with and there is no follow up care.

Weaknesses:

1. Dr. Andrew is young, 30, and lacking some business skills in my opinion. Maybe some of this will come with more experience though. I had some trouble getting my time set up and getting Dr. Andrew to respond, but was assured through Glenn’s office that I would be seen in the evening on my first day. Dr. A emailed me the night before – when I was already on my way to NYC (I got my Potter MRI the day before I saw Dr. A – and asked to switch it to the morning. Unfortunately we could not change our plans as we were driving up to Canada and wouldn’t get there until the afternoon. This added unneeded stress and like the financial issues could have been easily avoided with better planning. During my treatment it was obvious there was tension b/w Dr. A and Glenn as each told me things that should have been kept confidential and this was very unprofessional. I felt caught in the middle of a business deal "gone bad". Dr. A left Glenn claming that Glenn charged too much for the treatment. But Dr. A's treatment costs were not exactly cheap. I paid $3500 (for Glenn's ESWT portion) and $2200 (for Dr. A's portion).

2. Despite Dr. A’s claims to a whole body approach and treating each person as a unique case, I was treated basically the same as the other 4 patients I had spoken to prior to going had been treated. Dr. A does looks at your feet, fits you for orthotics if needed, does ART on the psoas, hip flexors, pelvic floor, and internal rectal manipulation and then ESWT is done. He did not look at the way I walked, sat, or do any of the tests on my hips/SIJD that the 8 PTs I have seen have done. I felt like Dr. A’s knowledge of SIJD was a little lacking. His belief is that most PN patients have SIJD and that is due to tight psoas and hip flexors pulling the SIJ anteriorly and rotating the pelvis. This is likely for many with PN, but in my case (due to my history of pregnancy and aggressive PT manipulation) it seems that ligament laxity is more to blame for my pelvic instability. This creates a bigger issue that I think should have been handled with more care as the ESWT seemed to further destabilize my pelvis by weakening my muscles that were being forced to stabilize my pelvis due to the laxity.

3. Dr. Andrew said they had treated around 30 PN patients with the protocol (I never could get him to give me a specific number despite the small amount of patients so I’m not sure how accurately he was keeping statistics). I was told when I left Cornwall that if I saw at least 30% pain reduction in about 2-3 weeks I would know that this treatment was right for me. After 3 weeks I was still very flared up so the timeframe changed to 5 weeks, then 8 weeks, and now I’ve been told that some people didn’t see any improvement until after 2-3 trips to Cornwall for treatment. I do not understand why Dr. A didn’t tell me this upfront instead of saying I should see 30% pain reduction in 2-3 weeks (which is the timeframe when the other 4 patients I had talked to prior saw pain reduction). I feel like the “story” changed a lot with Dr. A and this bothered me greatly….I don’t know who/what to believe to be honest. I asked if he could get me in contact with these people who came back for treatment when they were still worse (like me) and didn’t see improvement until visit 2-3, but Dr. A said that most people once they are better do not want to talk re-live those painful memories anymore. I personally would be glad to help anyone for the rest of my life –even if I was cured tomorrow!

4. Dr. A thinks the aggressiveness of his protocol is one of the things that sets him apart from other treatments, but I seriously question if he has treated anyone with true central sensitization and PN before, like myself. When someone’s CNS is so wound-up with pain, I just don’t understand how inflicting pain that even Percocet won’t touch, can be beneficial. All it has seemed to do to me is drive me further into the unbreakable cycle of pain. Dr. A continues to tell me though that often people get worse before they get better. I can understand if one gets worse, then stabilizes to baseline and tries the treatment again. But I just cannot take the risk of inflicting that much pain on my already weak body again only to be left in even more pain. Dr. A insinuated that fear of pain might be my problem. That some people never see a full recovery because they are too scared of the pain induced by the treatment to try it again (as Dr. A advises). I think that is a scare tactic Dr. A is using and that really hurt my feelings. As if any of us, has control over the amount of pain we have. Some of us have more hypersensitivity to pain than others and therefore we should turn from aggressive treatements that induce more pain, not run to them.

5. I think Dr. A is still trying to figure out what patient best benefits from his protocol. It seems to me from the 8 patients I have talked to/read their updates on HOPE that the patients who do best with the protocol are those with hip instability as the generator of their PN. This is purely my opinion and I have no idea why these patients do well and others do not seem to do as well. I do wonder if central sensitization is to blame though for those who do not respond the treatment or perhaps pelvic instability due to ligamen laxity.

The fact that I am worse from the treatment is very concerning. My pain is unfortunately not confined to the pelvis. I have widespread deep muscle knots and trigger points that seem to be caused from my pelvic instability and muscle compensation patterns. Glenn performed ESWT all over my body, from my neck to my calves and I think the ESWT was too much and too widespread making my muscle trigger points and pain worse. My quadratus lumborum on my left side (the side of my SIJD) is as hard a rock and Dr. A’s recommendation for this was massage, but I’ve had massage ever since my pain became disabling and it hasn’t helped these tight muscles. I’ve had more difficulty standing (burning in my feet and muscle tightness in my calves). I had new sciatica symptoms that came/went for the first 7 weeks or so after treatment. But the most concerning new symptom I have is burning/tightness in my hip flexors, groin, and upper hamstrings bilaterally. I NEVER had pain in this area before. Dr. A said my hip flexors were all very spasmed, and did very aggressive ART on them (and Glenn hit them hard with ESWT). I have had hypersensitivity now in this area off and on ever since the treatment. I am hypersensitive to my underwear at the bikini line and cannot stand for my hips to be flexed at all hardly. I’m not sure what happened and Dr. Andrew has not answered my question about these concerns (and he may not as I’ve told him my concerns about the protocol that I’ve explained here and that I don’t plan on returning to Cornwall for more treatment). Again I have increased medications and have been unable to get the pain under control. My pelvic floor pain was much worse for the first few weeks after the treatment, but went mostly back to baseline, though seems to be worse when the burning at the groin/hipflexors is worse. I have been stretching my hip flexors a lot and I wonder if that is making them worse. But what is causing the burning in that area?

Dr. Andrew’s treatment has helped several people and I appreciate all he is doing for the pelvic pain community. Unfortuantely I am not one of the successes and I cannot risk trying it again both financially and physically. I did not feel surgery was the right step for me though at the time, and I had tried pretty much every other conservative therapy. Looking back obviously I wish I had not tried the ESWT/ART, but I did what I thought was best at the time and I always would have wondered probably. My pain is complex and I don’t think anyone has been able to figure it out exactly and probably never will. For now, I am just focusing on pain management. We are hoping to move to a bigger city (if my husband can find a job) where I can have more options for alternative treatments for pain management and better access to more qualified PTs and doctors as traveling 2.5 hrs to see a PT is not helping my pain levels. Massage is the one treatment over the last 3.5+ years that has helped me even a little, so I am focusing my efforts (and funds) there for now. One day at a time…that’s all any of us can do.

[nyt]

Faith, thank you so much for your detailed experience, both the good, the bad and the ugly. This is always so helpful for individuals looking for the next treatment step.

I am worried about your flare. I can only speak from my personal experience with CRPS/RSD from the waist down when it comes to trigger point work. Anyone with CRPS who has trigger point work or even gentle massage can flare BIG time. The muscles will actually responds opposite to relaxation but will contract. Treating muscle spasms in patients with CRPS with hands-on therapies can only be done by someone who really understands the disease. The hands on therapy will only apply a firm but not painful pressure to the area and then gently but firmaly pull the hands apart. My adductors are in total knots and I have tried in the past to work more aggressively on them but every time I do they spasm down so bad I can't walk.

If you wouldn't mind if I made a suggestion. If at all possible you should find a doctor that specializes in CRPS/RSD and get either Ketamine or Lidocaine infusions. Stop all hands on therapy until you can see someone who really knows how to work with someone with Central Sensitization. If you see a PT who really knows what they are doing if you have any increase in pain that does not go away within 15 minutes they will not continue that exercise or form of therapy. With all your muscle knots someone needs to teach you how to do "Spray and Stretch." The Spray and Stretch helps deactivate trigger points. There is no way that with shortened muscles full of trigger points will stretching solve the problem unless you can use Ethyl Chloride Spray first to deactivate those trigger points. If you have a pool near by just floating in the pool, no exercises, is a great way to get those muscles to relax. If you PM me your email I can see if I can find my journal articles on CRPS to send you on some of this. Some of what I've learned along the way about exercises/hands therapy came by finally finding a PT that treats only patients with CRPS and she is fantastic. I flared really bad with her when she gave me one specific exercise and it only took one flare and that exercise is no more. I have to do alot of down training between each exercise to work on settling down the nervous system but I am finally making slow but steady progress with some of my PT exercises. When I started with her in Jan 2012 I could only do 3 reps of the exercises she gave me and now I'm up to 6. That's a 100% improvement and it is because I found PT who knows there stuff.

My heart goes out to you and you are in my prayers.

[Faith]

Hi Nyt,

Thanks so much for your prayers and your words of wisdom. I have never been diagnosed with CRPS (well, one doctor said he would call it CRPS so insurance would cover a Spinal cord stimulator). Doctors have said I have central sensitization (because I think it's the only way they can justify my widespread pain) but it is not like someone with fibromyalgia. I actually really respond well to deep massage and trigger point work. I do a lot of trigger point work on myself and I think it helps some when I am consistent with it, i just have so many trigger points i cannot keep them at bay. A PT tried spray and stretch on me once but it didn't do anything - but they may not have known what they were doing. I think my widespread trigger points are a result of my pelvic instability and SIJD and then I have a little sensitization going on as well. But perhaps it is something more. I just know that trigger points can cause a lot of hypersensitivity like CRPS. I wish I lived in an area with better healthcare but I don't and there is no one around me who deals with CRPS or ketamine. What do you think about cranio-sacral work? I will pm you, nyt.

Although deep massage/trigger point work helps me, ART was very bad for me and I would think anyone with trigger points because they pin down the muscle then aggressively stretch it through the patient doing movements. But if there are trigger point in the muscle then the stretching may only aggregate the muscles due to the trigger points. That was my experience at least.

[Karyn]

Hi Faith,
I'm so very sorry this treatment didn't work for you. I wish you the best as you continue to get an accurate diagnosis and appropriate treatment.
Hugs,
Karyn

[nyt]

My chiro does some cranial-sacral work on me. I consider it part of my arsenal to help but do not believe it will cure me.

[ezer]

Faith,
Thank you for your testimonial that is so informative and candid. It must not have been easy but it is key for all of us to be aware of the dangers and pitfalls of any new procedure.

[deBBieW]

Hi faith,
Thank you for your honesty, it's so difficult to write about these experiences. It makes one relive all the what-ifs, and maybes.
NYT spoke of being cautious of deep tissue work, I will have to say that I have had deep tissue massage for 20 years, and it's since my PNE I cannot tolerate massage below the waste or my supposed central sensitization burning really flares up. Yet my legs are so tight I need it. My pain doc says the burning, which is bilateral, is myofacial pain. He sort of snickered at me when I mentioned central sensitization. However, Dr. Hibner had the opposite reaction. He was concerned about it spreading to my feet etc. So any ways, I can't tolerate a lot of manual work on my lower body anymore. Thankfully I don't have constant burning, but who knows, that day may come.

I wonder if Dr. Andrews is so intense because his PN patients are from out of town. Is he trying to cram it all in? Would you have had the same reaction if you would see him say 2-3 times per a week, like a regular chiropractor. Is this how he treats his local PN patients? It's a shame, really a shame, as this seemed so promising, and it makes sense for people with mechanical issues as the cause of PN. MyStoryHurts also had severe sensitization pain, and eventually it went away. She had to see Andrews several times, and somehow it worked. I feel so bad for you, I know you went with expectations of progress.

I have also tried 3 sessions of cranial-sacral now, and unfortunately, I'm not seeing any difference. Actually, I felt it made my burning legs/thighs flare up. It's hard to tell what has what effect sometimes, but it seemed so. the burning went down again after a day or two, but the 3rd time it lasted for a week or so. I'm skipping that now. Tomorrow I see a new pelvic floor OT, she has worked with other Hibner patients.

Faith, you are in my prayers for some relief and well being.
NYT thanks for sharing your info too. If it ever cools off here, I'll try floating in my hot tub a little more to relax those muscles.

Debbie

[Jax87]

Hi Faith,
I'm sorry to hear that you are not feeling better after treatment in Cornwall. It was very brave of you to go and to try it for yourself. I think you are right that it works for some people and is not the best fit for others. Just don't lose hope that you will eventually get this figured out, or at least some relief. It would be great if you are able to move to a bigger city with better health care options for you.

Also, I'm probably starting to sound like a broken record, but if I might make a suggestion, you might want to think about getting an MRI of your hips since you have bad groin pain and can't stand for your hips to be flexed. I'm no doctor, but those are definitely the same symptoms as hip labral tears and impingements and might be one piece of your pain puzzle. The MRI can be done anywhere. I think you had previously said that you had already had one done awhile back, but the technology for viewing them has gotten a lot better recently. Lernica had a negative MRI years ago if I'm not mistaken and then they found one in both her hips.

Please keep us posted and don't lose hope.

Hugs,
Jackie

[Faith]

Thanks everyone for your support....it always helps to hear encouragement from my PN friends!

Jackie,

Yes, I think this is my next step - to have my hips ruled out. I have had MRIs (including a Potter MRI), but none of them showed labral tears....but they might not have been looking either. I know often an MRA is ordered, but I'm really not interested in have my hip injected especially when I have such burning in my groin...scared it may flare up the central sensitization or whatever I have going on!

I didn't really have hip pain before the ESWT, but I have had hip clicking for several years (but it never caused problems). I am surprisingly only 2.5 hrs away from one of the best arthroscopic hip surgeons in the US. He has a long waiting list and I'm not sure he would even accept me for a consult, but I think it's worth a shot. I think I likely have more pelvic instability (SIJD) than labral hip tears or impingement, but who knows. The problem is even if they did see a tear or impingement would I really try to have surgery as debilitated as I am? It's not an easy surgery (though not has invasive as PN decompression). Lots to think about...

[Jax87]

Great, I'm glad you are moving forward. From my experience, the Potter MRI of the pelvis does not look at your hips closely enough to see labral tears or impingements. I totally think it makes since that you are having more groin pain after the ESWT if you may have a tear. (because it loosens your muscles off of both your joints and your nerves)

Who knows, maybe your hip pathology could have something to do with your SIJD too. They found evidence of instability in my hip joints from my MRI. Just a thought. Your regular doctor may be able to right a prescription for the hip MRI, a 3T one is best if you can. The MRI doesn't require any injections and you can go from there. You might need an MRA later, but from what I hear, it is completely painless, even for those of us with upregulated systems. I've just had the MRI and the hip doctor wants me to have a CT scan and an xray before I see him, no MRA yet.

As far as surgery, get the MRI and then see if you even need it. Then go from there. But don't stop yourself from investigating it just because you might not want to have surgery. Yay for being close to a specialist though! I thought it would be a lot harder to get in to see one here, but it will take about 1.5 months. Not great, but not terrible. Maybe talk to your primary doctor for a referral and see if he or she can send you for an MRI first to get the ball rolling.

Hugs and Keep fighting the good fight,
Jackie