ESWT Treatment Experience in Cornwall
Posted: Sun Jul 29, 2012 5:36 am
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.
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.