ESWT Treatment Experience in Cornwall

[Alan1646]

Thanks Lernica. I've read Konedog's account of the therapy now and together with what you said it answers my first questions.
I'm now thinking about going very seriously. I think I need to see my GP about possible medication for the journey and the treatment.
Alan

[Lernica]

Alan, before you make the long trip from the U.K. you should know that the treatment doesn't work for everyone. The successes include me, KoneDog (so far), Surfsup and another lady whose name now escapes me but whom Konedog knows. Those who did not benefit from the treatment are Faith, KathyD, and two other ladies, also whose names now escape me. Please do a very thorough search of this website (using the search button above and the words ESWT, Cornwall, or Dr. Andrews) to find out everyone's names who have done the treatment, and then contact them to find out their experience. I would hate for you to make the long trip to Canada without being aware of the risks that the treatment might not work for you.

Also, as with any "alternative" treatment, ESWT is not a "cure" for PN. For me, it was just the beginning of a long journey to get better. After ESWT, I had two hip surgeries, six months of physical PT twice weekly, eight months (and counting) of pelvic PT weekly, daily walking, daily meditation, daily stretching. You get the picture. I was in such bad shape before going to Cornwall that I was basically bedridden. My pelvic muscles were all frozen into place. ESWT loosened them up so that I could start moving again and get to the root cause of my PN which turned out to be bad hips.

Today, I can walk and exercise again. I'm back in the gym. I have my life back. BUT I still have some chronic pelvic floor tightness (obturator internus and coccygeus muscles) which is quite painful and prevents me from sitting for more than 30 minutes at a time. So I still attend weekly painful PT sessions where the therapist internally (and aggressively) massages those muscles. She is very hopeful that she can massage them all out so that I can sit again. They could still be spasming because my left hip is still not healed from surgery (it was 3.5 months ago) OR because my pudendal nerve is still activating them. I dunno. Only time will tell.

The point is, here I am one year after first going to Cornwall (November, 2011, last visit was April, 2012) and although I feel 80% better, I'm still not sitting for long periods of time. ESWT, for me, was just one of many tools in my arsenal to get 100% better.

Good luck and please do not hesitate to contact me if you would like more information.

[Alan1646]

Thanks again Lernica, I understand the comments you have made and will think very carefully about the risks. It is a new therapy for PN.
Alan

[kathyd]

Hey Lernica
Thx for posting your above info. I assume Koneheads account is found in this discussion?
I have been offline for a long time ...
Pain is very bad lately, but I did experience a time in late aug and Sept where it went down enough to allow me to enjoy some social events and a trip with family..I was very careful.. and sat as little as possible, but it gave much us muchhope. I am not sure what made the pain recede then...it was about 4mos after my Canada experience.

In Oct pain went up again...
Im working with pain mgmt etc but no relief yet..
Im still considering going back to Dt Andrew... due to the fact that I did feel relief while there, but the worsening of symptoms later esp the urinary ones..and the awful pain, I endured there as well as the fact that Im skeptical about him for similar reasons to Faith's... hold me back.
I am glad to know he is an alterative tho.
I will read about Konehead..
By the way, I had no other work done in the hip surgery but the tear repair and psoas lengthening etc.. I had no hip issues..mine were urinary at that time...
Take care !

[Lernica]

Hahaha, it's Konedog not Konehead! But I'm sure he would love his new name!

Glad to hear you've had some good weeks; sorry to hear the pain has come back. When you had your labral tear repaired, did they ever find out the cause of the tear? Like did you have a bone spur (femoroacetabular impingement) that they shaved off too? If not, do you happen to know how you tore your labrum?

Faith has recently posted a good article about labral tears in the thread entitled "Did labral tear surgery reduce your perineum pain?" I wonder if your symptoms are still related to what might be going on in your hip? Is the perineum pain on the same side as your operated hip? I do hope you find some answers.

[kathyd]

Hi Lernica and everyone,
Just wondered if konedog posted under the above subject...I looked back through the past few pages and couldn't find it...
Is this post under a different subject heading.. maybe I missed it..
Just wondered what the details of his/her experience was with dr Andrew and how it compared to mine etc
Thanks for any direction you guys can point me in/

[kathyd]

Lerinica
Oh my.... I have definitely lost it!
Sorry to Konehead..
I will write back later! to answer ur questions
Thx for your good wishes
Kathy

[Lernica]

Here's his thread. See p. 18 where he posts about his trip to Cornwall: http://www.pudendalhope.info/forum/view ... &start=170

[Faith]

I just wanted to update this thread. Dr. Andrew charged me $128 for my records (for 5 days of treatment) to be sent to my disability attorney. I was blown away. The next closest amount I was charged was $38 and that was from my hip surgeon/PT (who I've seen for many months). My attorneys office said the US has a cap on how much doctors/medical practitioners can charge for medical records, but this did not apply to Dr. Andrew (since he is in Canada). I thought this was very sad as I had already paid Dr Andrew thousands of dollars for treatment. I don't know how it could have cost him $128 to print out and mail a few pages. He is supposedly a former PN sufferer himself. You would think he would have more empathy for his fellow chronic pelvic pain community, but apparently he does not. I don't know if anyone else actually sees him anymore, but I wanted to post as I think this experience is another example of Dr. Andrew's character.

[Karyn]

Dear Faith,

OMG!!!!

Kind regards,
Karyn