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Long term PF

Posted by J. King on 5/30/02 at 20:27 (085852)

Before I started reading and posting to heelspurs.com I did not know how many other people suffer as I do from PF and related foot problems. Many folks on this list have even worse feet than I do. Most people cannot imagine how a little thing like an inflamed heel can result in misery, disability, and social isolation. I am at my wits end as to how to fix my 17 year battle with PF. I don't run, bike or walk long distances anymore. No standing at the grocery store. This is a pain in the ass. I am going to my pod tomorrow to ask about any new treatments. How many people out there have long term unresolved PF or TTS?

Re: Long term PF

Janet C on 5/30/02 at 21:12 (085857)

I was first Dx'ed with PF over ten years ago. In '93, I had an Endoscopic PF. I finally had the heel spurs surgically removed from both feet in '97, and then I had TT Release on both feet in '98. As a result of the failed surgeries, I now have RSD/CRPS, permanent nerve damage that has spread from my feet, up both legs, and is now affectng my upper body.

It has been VERY painful and disabilitating.

Re: Long term PF

BrianG on 5/31/02 at 09:24 (085885)

I've been at the PF battle for over 8 years. Like Janet I also had failed EPF surgery. Thank god I did not follow it up with more surgery. I think Janet is a perfect example of 'it can always get worse'. Don't just rush into surgery, because some doctor claims to have a 90% cure rate!!! Janet, I hope your pain control is keeping up with yor pain. I know that nerve pain is very difficult to treat. Good luck

BrianG

Re: Long term PF

john h on 5/31/02 at 10:26 (085894)

Well put J King! There are a significant number of us with long term PF. I think the only promising thing available other than surgery for long term patients is ESWT. I would sure suggest you give it a go. If one treatment does not work then go for multiple treatments. One guy (Mohez) had bilateral PF for several years and went through 11 ESWT treatments and last reported he was cured. I have had bilaterial PF for around 7 years. I am not cured but a lot better than 7 years ago. Many doctors are unfamiliar with ESWT so do not be put off if your Doctor does not know about it or does not recommed it. It was approved by the FDA for two machines during the past two years. Go to http://www.healthtronics.com and look over the ESWT treatment information.

Re: Long term PF

john h on 5/31/02 at 10:47 (085900)

I came very close to getting EPF surgery and letting the doctor put an artifical joint in my big toe. The doc said i would be back to running in 4 weeks. He wanted to do a PF release on both feet at the same time. I later found that the artifical joint;s frequently fail. I stumbled on Heelspurs in it's early days and feel very lucky to possible have made a life altering mistake. I guess I am indebted to Scott in a big way. What can I do to repay you Scott (forget money)? I do not know any girls in Montgomery except Stephanie so that seems out.

Re: Long term PF

Pauline on 5/31/02 at 13:06 (085908)

Janet,
I very sorry to hear what you've been through. Your story isn't too different from others that have posted about having P.F. surgery. The sad part is patients have no idea that all physicians are not able to perform many of the surgeries they recommend, and many will not even provide referrals to physicians that do.

I'm sure if you could turn back the hands of time you'd do so. Hopefully your posting will remind others who are considering surgery to think long and hard about it before making that decision. It sounds like your problem with P.F. snowballed after that first surgery.

I hope you've been able to find a good physician who is caring and able to manage your pain.

Re: Janet, please check this out, it's important...

Sharon W on 5/31/02 at 13:18 (085909)

Janet,

If you see this and you can find the time, please check out the Doctors' board under 'Nerve decompression' -- posted by somebody named Dee. Perhaps there is something YOU could say to her, that might stop her from making a terrible mistake...

-- Sharon

Re: Janet, please check this out, it's important...

Janet C on 5/31/02 at 15:05 (085920)

Thanks for the kind thoughts, Brian, Pauline, and Sharon.

I hope Dee and others considering surgery for PF or TTS will exhaust all possible treatment modalities... and then try some more! So I posted a message to her, and I sincerely hope that my words will be accepted with the good will with which they were intended.

I am still struggling to get the pain under control. But the good news is that I've recently found a new PM Dr. (referred by my Biofeedback Dr.) who seems willing to work with me; and I can tell he has an excellent understanding of all the complexities of Complex Regional Pain Syndrome.

So I feel hopeful that I'll soon be able to join Laurie in that walk along the beach here in sunny Cal!

With warm, sunny wishes ~ Janet

Re: Janet, please check this out, it's important...

Sharon W on 5/31/02 at 15:49 (085926)

Janet,

Thanks. I am very glad to know that Dee has not jumped into anything, with the PF release. I don't quite understand what's going on with the 'nerve decompression,' though, that's what had me so concerned. But I certainly wish her well... I guess I was just worried because I am facing TTS surgery myself, and while I am satisfied that it is the right decision for me, I AM terrified of what could happen if it doesn't go well.

I am so sorry about your continuing RSD pain, I realize I can't IMAGINE what that must be like. I have a huge amount of respect for you and Laurie and Tammie, and anyone else with RSD who finds the fortitude to try to help the rest of us while still struggling to find peace through that pain.

-- Sharon

Re: I agree, Sharon!

Suzanne D on 5/31/02 at 15:56 (085930)

Janet, Laurie, and Tammy are so kind and sympathetic to others, while dealing with such pain themselves. I wish each of them better days ahead! I wish I could do something which could help them.

Suzanne :-)

Re: I agree, Sharon!

Laurie R on 5/31/02 at 16:09 (085931)

Dear Suzanne , you have done so much to help me . You have been so very kind to me since I have met you ... Yes RSD pain is terrible , it is very complex , I think in a way it has made us stronger and understand pain . Thank you so much for your kind words , they mean so much to me .....

Much love to you , Laurie R

Re: Janet, please check this out, it's important...

Laurie R on 5/31/02 at 16:12 (085932)

Dear Sharon , Thank you for your kind words to us ... They mean so much .. When are you going to have your surgery ? Do you have it scheduled yet? Due to my RSD that is what took so long for me to have surgery . It has been 3 and half weeks since I had my surgery . I am still happy I had it done . I am still non weight barring , I see my Pod this Wed for post opp. I would of saw him today , but I had my injections done yesterday and did not think I would be up to it .

I wish you only the best and thank you again , Much love always , Laurie R

Re: Janet, please check this out, it's important...

Sharon W on 5/31/02 at 19:15 (085949)

Laurie,

No, my surgery isn't scheduled yet. I want my 16-year-old to have her drivers' license before I get cut on, because my husband has eye problems and can't drive.

It really does sound like your surgery went remarkably well, considering how complicated everything was because of your RSD. Of course I know that a big part of the reason is your wonderful and supportive family! I hope things will continue to go really well for you, that you will recover completely without any new problems from RSD and you will find relief from the pain you have been living with so long.

-- Sharon

Re: I agree, Sharon!

Janet C on 5/31/02 at 23:57 (085975)

Suzanne, Thank you so much for your kindness. You have helped me, because your words always brighten my day! I wish better days for you, as well!

With Loving Thoughts ~ Janet

Re: Long term PF

Janet C on 5/30/02 at 21:12 (085857)

I was first Dx'ed with PF over ten years ago. In '93, I had an Endoscopic PF. I finally had the heel spurs surgically removed from both feet in '97, and then I had TT Release on both feet in '98. As a result of the failed surgeries, I now have RSD/CRPS, permanent nerve damage that has spread from my feet, up both legs, and is now affectng my upper body.

It has been VERY painful and disabilitating.

Re: Long term PF

BrianG on 5/31/02 at 09:24 (085885)

I've been at the PF battle for over 8 years. Like Janet I also had failed EPF surgery. Thank god I did not follow it up with more surgery. I think Janet is a perfect example of 'it can always get worse'. Don't just rush into surgery, because some doctor claims to have a 90% cure rate!!! Janet, I hope your pain control is keeping up with yor pain. I know that nerve pain is very difficult to treat. Good luck

BrianG

Re: Long term PF

john h on 5/31/02 at 10:26 (085894)

Well put J King! There are a significant number of us with long term PF. I think the only promising thing available other than surgery for long term patients is ESWT. I would sure suggest you give it a go. If one treatment does not work then go for multiple treatments. One guy (Mohez) had bilateral PF for several years and went through 11 ESWT treatments and last reported he was cured. I have had bilaterial PF for around 7 years. I am not cured but a lot better than 7 years ago. Many doctors are unfamiliar with ESWT so do not be put off if your Doctor does not know about it or does not recommed it. It was approved by the FDA for two machines during the past two years. Go to http://www.healthtronics.com and look over the ESWT treatment information.

Re: Long term PF

john h on 5/31/02 at 10:47 (085900)

I came very close to getting EPF surgery and letting the doctor put an artifical joint in my big toe. The doc said i would be back to running in 4 weeks. He wanted to do a PF release on both feet at the same time. I later found that the artifical joint;s frequently fail. I stumbled on Heelspurs in it's early days and feel very lucky to possible have made a life altering mistake. I guess I am indebted to Scott in a big way. What can I do to repay you Scott (forget money)? I do not know any girls in Montgomery except Stephanie so that seems out.

Re: Long term PF

Pauline on 5/31/02 at 13:06 (085908)

Janet,
I very sorry to hear what you've been through. Your story isn't too different from others that have posted about having P.F. surgery. The sad part is patients have no idea that all physicians are not able to perform many of the surgeries they recommend, and many will not even provide referrals to physicians that do.

I'm sure if you could turn back the hands of time you'd do so. Hopefully your posting will remind others who are considering surgery to think long and hard about it before making that decision. It sounds like your problem with P.F. snowballed after that first surgery.

I hope you've been able to find a good physician who is caring and able to manage your pain.

Re: Janet, please check this out, it's important...

Sharon W on 5/31/02 at 13:18 (085909)

Janet,

If you see this and you can find the time, please check out the Doctors' board under 'Nerve decompression' -- posted by somebody named Dee. Perhaps there is something YOU could say to her, that might stop her from making a terrible mistake...

-- Sharon

Re: Janet, please check this out, it's important...

Janet C on 5/31/02 at 15:05 (085920)

Thanks for the kind thoughts, Brian, Pauline, and Sharon.

I hope Dee and others considering surgery for PF or TTS will exhaust all possible treatment modalities... and then try some more! So I posted a message to her, and I sincerely hope that my words will be accepted with the good will with which they were intended.

I am still struggling to get the pain under control. But the good news is that I've recently found a new PM Dr. (referred by my Biofeedback Dr.) who seems willing to work with me; and I can tell he has an excellent understanding of all the complexities of Complex Regional Pain Syndrome.

So I feel hopeful that I'll soon be able to join Laurie in that walk along the beach here in sunny Cal!

With warm, sunny wishes ~ Janet

Re: Janet, please check this out, it's important...

Sharon W on 5/31/02 at 15:49 (085926)

Janet,

Thanks. I am very glad to know that Dee has not jumped into anything, with the PF release. I don't quite understand what's going on with the 'nerve decompression,' though, that's what had me so concerned. But I certainly wish her well... I guess I was just worried because I am facing TTS surgery myself, and while I am satisfied that it is the right decision for me, I AM terrified of what could happen if it doesn't go well.

I am so sorry about your continuing RSD pain, I realize I can't IMAGINE what that must be like. I have a huge amount of respect for you and Laurie and Tammie, and anyone else with RSD who finds the fortitude to try to help the rest of us while still struggling to find peace through that pain.

-- Sharon

Re: I agree, Sharon!

Suzanne D on 5/31/02 at 15:56 (085930)

Janet, Laurie, and Tammy are so kind and sympathetic to others, while dealing with such pain themselves. I wish each of them better days ahead! I wish I could do something which could help them.

Suzanne :-)

Re: I agree, Sharon!

Laurie R on 5/31/02 at 16:09 (085931)

Dear Suzanne , you have done so much to help me . You have been so very kind to me since I have met you ... Yes RSD pain is terrible , it is very complex , I think in a way it has made us stronger and understand pain . Thank you so much for your kind words , they mean so much to me .....

Much love to you , Laurie R

Re: Janet, please check this out, it's important...

Laurie R on 5/31/02 at 16:12 (085932)

Dear Sharon , Thank you for your kind words to us ... They mean so much .. When are you going to have your surgery ? Do you have it scheduled yet? Due to my RSD that is what took so long for me to have surgery . It has been 3 and half weeks since I had my surgery . I am still happy I had it done . I am still non weight barring , I see my Pod this Wed for post opp. I would of saw him today , but I had my injections done yesterday and did not think I would be up to it .

I wish you only the best and thank you again , Much love always , Laurie R

Re: Janet, please check this out, it's important...

Sharon W on 5/31/02 at 19:15 (085949)

Laurie,

No, my surgery isn't scheduled yet. I want my 16-year-old to have her drivers' license before I get cut on, because my husband has eye problems and can't drive.

It really does sound like your surgery went remarkably well, considering how complicated everything was because of your RSD. Of course I know that a big part of the reason is your wonderful and supportive family! I hope things will continue to go really well for you, that you will recover completely without any new problems from RSD and you will find relief from the pain you have been living with so long.

-- Sharon

Re: I agree, Sharon!

Janet C on 5/31/02 at 23:57 (085975)

Suzanne, Thank you so much for your kindness. You have helped me, because your words always brighten my day! I wish better days for you, as well!

With Loving Thoughts ~ Janet