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3 months Post ESWT - My story

Posted by Molly on 3/01/01 at 10:28 (040176)

Hello all you PF suffers. After reading some recent posts, I thought I'd post my 'ESWT story.' I haven't posted on here in a while (though I read religiously), but I thought I'd give you an update on how I'm doing and give some of you some hope. After what I've been through, sometimes it looks as if there isn't any hope at all, but my word to you is.. HANG in there, time is the only thing on our sides here. Trust me on that one.

Here's a short version of my story. I've had PF for 3 years, tried everything, custom inserts, shots, stretching, ice, ice and ice, blah blah blah ... you all know the drill by now. I had my first ESWT treatment on September 22, 2000, in Ft. Myers, Florida. (I live in Tampa so it was a 2 hour drive). They were very nice there, and if anyone is thinking about going there, you can email me with any questions. After my first treatment, I really didn't have much relief at all so I went for a second treatment on November 30, 2000. The months of December and January were pretty grim for me, not feeling much relief at all and I was really beginning to lose all hope of ever leading a normal life again. I was a prisoner in my own hell. I was beginning to think I was one of the ones with the small percentage that ESWT didn't work for.

Now, it being March, I think I've actually turned the corner. I've felt better than I have in months... years - wow, that's scary! Maybe some of us just need more time than others, I really don't know, but I'm headed in the right direction. I think ESWT works differently in everyone, there's no way to tell exactly when you will feel relief. It has been three months since my second treatment and I'm just now feeling my relief. I just have small twinges now and then. This has been my best week in a VERY long time. Believe me, I'm no way near a 'normal life' yet, I have not returned to my Jazzercise class or my rollerblading. Will I ever? I hope so, but I don't know the answer to that. I'm taking it VERY slow and will slowly try to build the strength back in my legs that I feel I've lost over the past few months.

My word to you: Time and patience. It's hard to accept, but really, it's all we've got to hang to. If anyone wants to email me with any questions or concerns, feel free. I can try to help you. This has been the worst ordeal I've ever had to go through in my entire life, physically and emotionally.

Dr. Ostendorf - a BIG thank you.

Molly

Re: 3 months Post ESWT - My story

Cynthia D on 3/01/01 at 11:07 (040183)

Hi Molly thanks so much for writing your story - you have inspired me! I am going to Ft. Myers at 3:00 today!! I almost went to Dr. Ostendorf because we have a second home in Sanibel, but chose Dr. Z in NJ because he helped me and so many others on this site (Dr. Ostendorf, are you listening?). I have pf over 4 years and was at the lowest point of my life when I discovered ESWT on this site last January!! I had treatment Feb. 6, almost 4 weeks ago. I am making great improvements (see below) as far as I'm not sitting at my desk crying any more because of pain even while seated. However, I'm not yet doing all I want to or wallking symptom-free either so you inspire me.

My goal was to play team tennis in May - maybe too unrealistic? Someone posted 'Are we ever cured of pf'? Maybe with ESWT we can be. I hope to get back into my exercise routine vigorously.

Are you pretty much going to the grocery store, malls, that type of walking? How did you decide to go for treatment #2? How do you decide how much walking you can do without setting off the pain again?

Thanks again for sharing. It helps a lot. Best wishes.

Re: 3 months Post ESWT - My story

Molly on 3/01/01 at 11:29 (040187)

Hello Cynthia! Are you going to see Dr. O. at 3:00 today? Tell him 'hello!'

I decided to go for the 2nd treatment because after almost 8 weeks, I really didn't have any relief at all, and after reading all the posts on here, I heard 'more treatments are better'. I'm glad now I did.

As far as how I'm walking. Well, for the past 6 to 8 months I've been 'a prisoner' as I stated above. I've gone no where. The only place I've gone is the grocery store, only because I HAVE to. I get the cart (even if I'm only there for 3 items!) and lean on it and use is pretty much like a walker. Haven't seen a mall in MONTHS or any other stores for that matter. Did all my Christmas shopping on line, and any other shopping for myself on line. Amazon.com LOVES me LOL!

I am just now starting to venture out, walking a little more each day. This week is my first week I've felt pretty good so I haven't really been anywhere yet, part of me is a little scared to. I haven't tried the mall yet, but I'm anxious too. One of our malls was remodelled months ago and I have yet to see it! Someone here at work in passing said, 'you know... the Old Navy store at the Westshore Mall...?' I said, 'Westshore has an Old Navy?' Imagine my embarrassment after the looks I got! LOL SHEEESH... I need to get out more. Just an example of how I'm been cooped up way too long. I really hope I'm on the mend now and I will once again get to that mall. Hang in there Cynthia and everyone else out there. You are not alone in your hell. I've been to hell and back.

Molly

Re: 3 months Post ESWT - My story

Dr. Zuckerman on 3/01/01 at 18:00 (040224)

Good to hear that you are getting better. Yes I agree that time is one of the most difficult factors to predict and is different in everyone.

Re: 3 months Post ESWT - My story

Russell L on 3/02/01 at 19:44 (040298)

Hello Molly. I was glad to hear your message. I have been in terrible pain for awhile now. Can you give me an idea of how much the the ESWT treatment cost. It is amazing how much this hurts. I kept thinking it was going to get better,but it hasn't. Two cortisone shots and still not better.
Help!! I ma in the Tampa area too. Is there a reason why you went to The Ft. Myers area over some of the other locations.
Russell

Re: 3 months Post ESWT - My story

Camilla on 3/02/01 at 21:25 (040312)

Helo Molly. I live in St. Louis and plan to have ESWT the beginning of April. I've heard conflicting information about post-procedure restrictions. I am a registered nurse that spends 95% of my work hours on my feet. What did your doctor recommend? My doctor said I could return to work later that same day. His nurse said I would be of 2-3 weeks. That's a vast time variance and I'd like to hear from someone that has actually been through the procedure.

Thank you.

Re: 3 months Post ESWT - My story

Russell on 3/03/01 at 12:41 (040344)

Russell,

I live in St. Louis and have seen both a podatrist and an orthopedic surgeon. Both have investigated my insurance coverage and found that this procedure was a covered service.

Camilla

Re: 3 months Post ESWT - My story

Cynthia D on 3/05/01 at 11:25 (040452)

Molly - I know what you mean being a prisoner. I can't wait to go to the grocery store again. I always used the cart as a crutch, too (before treatment). It's hard to say goodbye to it when you reach your car, isn't it? My feet are continuing to get better day by day, and I'm almost at the pre-ESWT pain level now (almost). I can imagine doing more, but am terrified to get worse again. It's only been 4 weeks, though. I wonder if I will only need the one treatment, and really hope so. No, I didn't go to Steven O. My doc is Dr. Z (Wizard). We were on a quickie vacation. I have a glorious sunburn and love it!

Russell, how about entering Dr. Z's lotto? You will get a airplane reservation cheaper than the treatments, they seem to vary from $1,800 for one foot to $3,000 for both. Ask any of the Docs on the board here and they will give you info.

Camilla, being a nurse on your feet all day must be hard, but how noble is being a nurse! The world needs more of you. Everyone seems to have a different recovery time. Maybe 2-3 weeks would be ok for you, if you can have breaks and can sit while you're at the nurses station it would be helpful. Some seem to get up and walk sooner. For me, I would think I would need about 6 weeks to go back to working on my feet full time (if I were a nurse). Perhaps you can go back part time after in the beginning? I wish you the best of luck.

Re: 3 months Post ESWT - My story

Molly on 3/05/01 at 12:38 (040458)

Russell: I went to Ft. Myers because there is no other Doc in the entire State of Florida performing ESWT. Good luck to all of you in fighting this unbearable monster.

Re: Camilla:

Molly on 3/05/01 at 12:46 (040459)

Wow, your doc told you that you could go to work that same day? I cannot imagine. My foot was so sore from the procedure itself that I was off of my foot for 3 days. The pain from the procedure itself lasted about a week, but I was walking around, but very gentle. I could never have a job that is on my feet, wow, I really feel your pain there. It was recommended to me to 'take it easy' on my feet for a minimum of 12 weeks. Good luck, I hope you don't have to miss too much work.

Re: Russell L:

Molly on 3/05/01 at 12:49 (040460)

The procedure cost me $1,300 for the first zap, and $500 for the second, or something like that, I may be off by a few. My insurance did not cover it at all, it was all out of my pocket, but if it works, it's well worth it was my thought. Ft. Myers is the only location in FL currently performing ESWT.

Re: Russell L:

Russell on 3/05/01 at 17:10 (040483)

Russell,

I live in St. Louis and work for a large hospital. The physicians in this area have just starting doing ESWT. My insurance is through my employer. The hospital I work for does not have the equipment on-site. Therefore, they were willing to pre-certed the procedure to be done at an out-patient center.

May I make several suggestions? First, find a good physicain...M.D., D.O., or Podiatrist that is close to home, located in a city that offers reasonably airfare, if it's too far to drive. Then consider taking the time to call your insurance company and explain that the ESWT is not available locally and ask them to provide a letter of authorization for you to have the ESWT performed at the closet facility to where you live; even if out of state. Most insurance companies record all conversations. Inquire as to if the conversation is being recorded...if it isn't ask that it is. Keep good records of your discussions...note the date, time, name and position of the person you talk to and then ask for everything in writing.

This procedure is new and it might take some leg-work to get it covered. I work for a surgeon who has patients come from all over the United States because of his reputation for quality work. I pre-cert his surgeries and know that insurance companies authorize speciality situations all the time.

I don't know Dr. Z. and it seems that he's really trying to help. Walk, do not run (HA!HA!) to sign up for his Lotto.

Hope this helps.
Camilla

Re: Insurance Coverage for ESWT ???

nick w. on 3/06/01 at 12:07 (040574)

Camilla

I also live in St. Louis and have had ESWT recommended, but United Healthcare rejected the procedure on the grounds that it is 'considered investigational due to the lack of scientific, peer reviewed literature demonstrating the long-term effects.'
Is there any chance of you pointing me toward a source of such literature ?
I'd REALLY appreciate it. Thanks.

Nick W.
roznick@worldinter.net

Re: Molly

Camilla on 3/06/01 at 19:12 (040645)

Molly,

Well...I've read to much on this message board to believe him. The equipment is new to St. Louis and my doctor is just getting started. I don't think he's has a sense of treatment sequencing.

I'm aware of the bruising and plan to be off at least 3-4 days and then return to limited duty, if I can get it arranged. I've dealt with so much pain and discomfort. I'm WILLING that the pain won't be any more than I've already experienced.

Camilla

Re: Nick-Insurance Coverage for ESWT ???

Camilla on 3/06/01 at 19:26 (040647)

Nick,

My sister works for United Healthcare and I'll check with her on how to navigate the system. The same treatment theory has been used for years to dissolve kidney stones. ESWT has been use in Germany for quite some time and there's plenty of information. Problem is, it's in German...seems they should make the effort to have it interupted. Today it seems that FDA approval doesn't mean much to some insurance companies.

Until I get back with you consider talking to your Human Relations representative. Have a chronological record of your symptons and failed treatment. Also, ask your doctor to provide a letter recommending ESWT.
You can always challenge this decision through your insurance appeals process.

I'll be in touch.

Camilla

Re: Nick-Insurance Coverage for ESWT ???

Camilla on 3/06/01 at 20:54 (040656)

Nick,

I talked to my sister. She suggested you call United Healthcare and ask for 'Care Coordination' (The name of this department at other insurance carriers might be diferent.) This is first channel to try. Give them the whole story, plead your case and see what they will do for you. If you fail with Care Coordination call the Department of Insurance for the State of Missouri and file a written complaint. They have a 800 number. Make your next call back to Care Corrdination at United Healthcare and inform them that they will be hearing from the Department of Insurance. Apparently, United Healthcare, and all other insurance carriers, have a special group dedicated to D.O.I. cases. It makes them sit up and pay attention.

I'm told every State has a Department of Insurance and this process can be followed to get ESWT covered.

Hope this helps.

Camilla

Re: 3 months Post ESWT - My story

Cynthia D on 3/01/01 at 11:07 (040183)

Hi Molly thanks so much for writing your story - you have inspired me! I am going to Ft. Myers at 3:00 today!! I almost went to Dr. Ostendorf because we have a second home in Sanibel, but chose Dr. Z in NJ because he helped me and so many others on this site (Dr. Ostendorf, are you listening?). I have pf over 4 years and was at the lowest point of my life when I discovered ESWT on this site last January!! I had treatment Feb. 6, almost 4 weeks ago. I am making great improvements (see below) as far as I'm not sitting at my desk crying any more because of pain even while seated. However, I'm not yet doing all I want to or wallking symptom-free either so you inspire me.

My goal was to play team tennis in May - maybe too unrealistic? Someone posted 'Are we ever cured of pf'? Maybe with ESWT we can be. I hope to get back into my exercise routine vigorously.

Are you pretty much going to the grocery store, malls, that type of walking? How did you decide to go for treatment #2? How do you decide how much walking you can do without setting off the pain again?

Thanks again for sharing. It helps a lot. Best wishes.

Re: 3 months Post ESWT - My story

Molly on 3/01/01 at 11:29 (040187)

Hello Cynthia! Are you going to see Dr. O. at 3:00 today? Tell him 'hello!'

I decided to go for the 2nd treatment because after almost 8 weeks, I really didn't have any relief at all, and after reading all the posts on here, I heard 'more treatments are better'. I'm glad now I did.

As far as how I'm walking. Well, for the past 6 to 8 months I've been 'a prisoner' as I stated above. I've gone no where. The only place I've gone is the grocery store, only because I HAVE to. I get the cart (even if I'm only there for 3 items!) and lean on it and use is pretty much like a walker. Haven't seen a mall in MONTHS or any other stores for that matter. Did all my Christmas shopping on line, and any other shopping for myself on line. Amazon.com LOVES me LOL!

I am just now starting to venture out, walking a little more each day. This week is my first week I've felt pretty good so I haven't really been anywhere yet, part of me is a little scared to. I haven't tried the mall yet, but I'm anxious too. One of our malls was remodelled months ago and I have yet to see it! Someone here at work in passing said, 'you know... the Old Navy store at the Westshore Mall...?' I said, 'Westshore has an Old Navy?' Imagine my embarrassment after the looks I got! LOL SHEEESH... I need to get out more. Just an example of how I'm been cooped up way too long. I really hope I'm on the mend now and I will once again get to that mall. Hang in there Cynthia and everyone else out there. You are not alone in your hell. I've been to hell and back.

Molly

Re: 3 months Post ESWT - My story

Dr. Zuckerman on 3/01/01 at 18:00 (040224)

Good to hear that you are getting better. Yes I agree that time is one of the most difficult factors to predict and is different in everyone.

Re: 3 months Post ESWT - My story

Russell L on 3/02/01 at 19:44 (040298)

Hello Molly. I was glad to hear your message. I have been in terrible pain for awhile now. Can you give me an idea of how much the the ESWT treatment cost. It is amazing how much this hurts. I kept thinking it was going to get better,but it hasn't. Two cortisone shots and still not better.
Help!! I ma in the Tampa area too. Is there a reason why you went to The Ft. Myers area over some of the other locations.
Russell

Re: 3 months Post ESWT - My story

Camilla on 3/02/01 at 21:25 (040312)

Helo Molly. I live in St. Louis and plan to have ESWT the beginning of April. I've heard conflicting information about post-procedure restrictions. I am a registered nurse that spends 95% of my work hours on my feet. What did your doctor recommend? My doctor said I could return to work later that same day. His nurse said I would be of 2-3 weeks. That's a vast time variance and I'd like to hear from someone that has actually been through the procedure.

Thank you.

Re: 3 months Post ESWT - My story

Russell on 3/03/01 at 12:41 (040344)

Russell,

I live in St. Louis and have seen both a podatrist and an orthopedic surgeon. Both have investigated my insurance coverage and found that this procedure was a covered service.

Camilla

Re: 3 months Post ESWT - My story

Cynthia D on 3/05/01 at 11:25 (040452)

Molly - I know what you mean being a prisoner. I can't wait to go to the grocery store again. I always used the cart as a crutch, too (before treatment). It's hard to say goodbye to it when you reach your car, isn't it? My feet are continuing to get better day by day, and I'm almost at the pre-ESWT pain level now (almost). I can imagine doing more, but am terrified to get worse again. It's only been 4 weeks, though. I wonder if I will only need the one treatment, and really hope so. No, I didn't go to Steven O. My doc is Dr. Z (Wizard). We were on a quickie vacation. I have a glorious sunburn and love it!

Russell, how about entering Dr. Z's lotto? You will get a airplane reservation cheaper than the treatments, they seem to vary from $1,800 for one foot to $3,000 for both. Ask any of the Docs on the board here and they will give you info.

Camilla, being a nurse on your feet all day must be hard, but how noble is being a nurse! The world needs more of you. Everyone seems to have a different recovery time. Maybe 2-3 weeks would be ok for you, if you can have breaks and can sit while you're at the nurses station it would be helpful. Some seem to get up and walk sooner. For me, I would think I would need about 6 weeks to go back to working on my feet full time (if I were a nurse). Perhaps you can go back part time after in the beginning? I wish you the best of luck.

Re: 3 months Post ESWT - My story

Molly on 3/05/01 at 12:38 (040458)

Russell: I went to Ft. Myers because there is no other Doc in the entire State of Florida performing ESWT. Good luck to all of you in fighting this unbearable monster.

Re: Camilla:

Molly on 3/05/01 at 12:46 (040459)

Wow, your doc told you that you could go to work that same day? I cannot imagine. My foot was so sore from the procedure itself that I was off of my foot for 3 days. The pain from the procedure itself lasted about a week, but I was walking around, but very gentle. I could never have a job that is on my feet, wow, I really feel your pain there. It was recommended to me to 'take it easy' on my feet for a minimum of 12 weeks. Good luck, I hope you don't have to miss too much work.

Re: Russell L:

Molly on 3/05/01 at 12:49 (040460)

The procedure cost me $1,300 for the first zap, and $500 for the second, or something like that, I may be off by a few. My insurance did not cover it at all, it was all out of my pocket, but if it works, it's well worth it was my thought. Ft. Myers is the only location in FL currently performing ESWT.

Re: Russell L:

Russell on 3/05/01 at 17:10 (040483)

Russell,

I live in St. Louis and work for a large hospital. The physicians in this area have just starting doing ESWT. My insurance is through my employer. The hospital I work for does not have the equipment on-site. Therefore, they were willing to pre-certed the procedure to be done at an out-patient center.

May I make several suggestions? First, find a good physicain...M.D., D.O., or Podiatrist that is close to home, located in a city that offers reasonably airfare, if it's too far to drive. Then consider taking the time to call your insurance company and explain that the ESWT is not available locally and ask them to provide a letter of authorization for you to have the ESWT performed at the closet facility to where you live; even if out of state. Most insurance companies record all conversations. Inquire as to if the conversation is being recorded...if it isn't ask that it is. Keep good records of your discussions...note the date, time, name and position of the person you talk to and then ask for everything in writing.

This procedure is new and it might take some leg-work to get it covered. I work for a surgeon who has patients come from all over the United States because of his reputation for quality work. I pre-cert his surgeries and know that insurance companies authorize speciality situations all the time.

I don't know Dr. Z. and it seems that he's really trying to help. Walk, do not run (HA!HA!) to sign up for his Lotto.

Hope this helps.
Camilla

Re: Insurance Coverage for ESWT ???

nick w. on 3/06/01 at 12:07 (040574)

Camilla

I also live in St. Louis and have had ESWT recommended, but United Healthcare rejected the procedure on the grounds that it is 'considered investigational due to the lack of scientific, peer reviewed literature demonstrating the long-term effects.'
Is there any chance of you pointing me toward a source of such literature ?
I'd REALLY appreciate it. Thanks.

Nick W.
roznick@worldinter.net

Re: Molly

Camilla on 3/06/01 at 19:12 (040645)

Molly,

Well...I've read to much on this message board to believe him. The equipment is new to St. Louis and my doctor is just getting started. I don't think he's has a sense of treatment sequencing.

I'm aware of the bruising and plan to be off at least 3-4 days and then return to limited duty, if I can get it arranged. I've dealt with so much pain and discomfort. I'm WILLING that the pain won't be any more than I've already experienced.

Camilla

Re: Nick-Insurance Coverage for ESWT ???

Camilla on 3/06/01 at 19:26 (040647)

Nick,

My sister works for United Healthcare and I'll check with her on how to navigate the system. The same treatment theory has been used for years to dissolve kidney stones. ESWT has been use in Germany for quite some time and there's plenty of information. Problem is, it's in German...seems they should make the effort to have it interupted. Today it seems that FDA approval doesn't mean much to some insurance companies.

Until I get back with you consider talking to your Human Relations representative. Have a chronological record of your symptons and failed treatment. Also, ask your doctor to provide a letter recommending ESWT.
You can always challenge this decision through your insurance appeals process.

I'll be in touch.

Camilla

Re: Nick-Insurance Coverage for ESWT ???

Camilla on 3/06/01 at 20:54 (040656)

Nick,

I talked to my sister. She suggested you call United Healthcare and ask for 'Care Coordination' (The name of this department at other insurance carriers might be diferent.) This is first channel to try. Give them the whole story, plead your case and see what they will do for you. If you fail with Care Coordination call the Department of Insurance for the State of Missouri and file a written complaint. They have a 800 number. Make your next call back to Care Corrdination at United Healthcare and inform them that they will be hearing from the Department of Insurance. Apparently, United Healthcare, and all other insurance carriers, have a special group dedicated to D.O.I. cases. It makes them sit up and pay attention.

I'm told every State has a Department of Insurance and this process can be followed to get ESWT covered.

Hope this helps.

Camilla