Home The Book Dr Articles Products Message Boards Journal Articles Search Our Surveys Surgery ESWT Dr Messages Find Good Drs video

DR. Z.

Posted by KATHY H on 2/04/04 at 12:19 (143624)

THIS IS TO DR. Z ABOUT THE NODULES IN MY FEET AND THE CHEMO THE DRS. WANT TO DO. I AM NOT LEANING TOWARDS THE CHEMO OMLY AS A LAST OPTION. MY MAIN CONCERN IS THE AMOUNT OF TISSUE THEY WILL TAKE OUT THIS TIME. HOW WILL I WALK. I DO NOT WALK VERY GOOD NOW. I HAVE HAD 2 MAJOR BACK SURGERIES ALSO IN THE PAST. SO MY GAIT WITH THAT AND THE FIRST FOOT SURGERY I AM AFRAID OF THE RESULTS. THE LAST TIME I WAS IN A WHEELCHAIR FOR 4 MONTHS

Re: DR. Z.

Dr. Z on 2/04/04 at 20:39 (143644)

I can understand your concern. It is very difficult to make a decision without seeing the extend of your pain and size of your nodules. Surgery as you know can have a very poor outcome. Local injections can be beneficial Take a look at the information on the search engines from this site that discuss your specific problem and potential treatments

Re: DR. Z.

KATHY H on 2/05/04 at 08:52 (143670)

DR Z. I HAVE HAD TIS PROBLEM FOR 4 YEARS OR MORE THE DR. I AM SEEING NOE IS THE FOURTH DR. TH FIRST ONE THAT DID THE FIRST SURGERY IS AN ORTHOPEDIC. THE NEXT 2 ARE BOTH ORTHOPEDIS FORM PHILADELPHIA ORTHOPEDIC HOSPITAL. THE LAST ON I AM FINALLY SEEING THE 16TH OF THIS MONTH IS FROM PENN STATE HERSHEY MEDICAL CENTER ORTHOPEDICS. SO YOU SEE I HAVE DONE SOME HOMEWORK ON DRS. AND MY PROBLEM. THE PAIN LEVEL IN MY FOOT IS CAPARED TO PUTTING A LARGE MARBLE IN YOUR SHOE, RIGHT ON THE ARCH , TAPE IT THERE AND WALK AROUND JUST TRYING TO TO EVERYDAY NORMAL THINGS. IT'S LIKE HAVING A ROCK IN YOUR SHOE, IF THATS NOT PAINFUL ENOUGH, STICK IT UNDER YOUR SKIN WHERE YOU CAN'T MOVE IT OR GET AWAY FROM IT. I EVEN HAVE SPECIAL ORTHODICS IN MY SHOES. I HAVE A HOLE CUT IN IT TO LET THE NODULE REST IN THERE WHEN I WALK. NOT VERY GOOD. I HAVE BEEN RESEARHING THIS FOR AWHILE. NOT MANY CASES TO BE SEEN OR HEARD FROM ! KATHY H

Re: DR. Z.

Julie on 2/05/04 at 09:25 (143673)

Kathy

If you go to the home page of this website, you will see there is a search facility. Type in 'Plantar Fibroma' and you will find many discussions about it.

I've just done that, and copied one post, by Dr Davis, for you, to give you an idea of the type of treatment available:

Re: is it typical to have a lump with plantar facsiitis?
Posted by Ed Davis,DPM on 9/05/03 at 16:14
mike:
If the lump is in the plantar fascia, it is most likely to be plantar fibromatosis. It is easily cured by injecting it with hyaluronidase (an enzyme that breaks down scar tissue) and triamcinolone acetonide.

Ed

Kathy, none of your posts indicate that you have seen a podiatrist (foot doctor) although you have seen a number of orthopedic doctors. That would be a good next step.
.

Re: DR. Z.

Pauline on 2/05/04 at 09:55 (143676)

Kathy,
I remember a post from another woman who it seemed to me had a similar problem. If I recall correctly she sent her MRI to Dr. Z and eventually
ended up having surgery after that.

I don't recall if he recommended the doctor that did her surgery or not, but perhaps he provide more information.

We haven't her post lately, but I hope if she sees your post she will respond. I know she was in a great deal of pain and like you spoke about having a marble to walk on, but I think her surgery was successful.

Does anyone else recall the other posters name or perhaps even have her email address? Kathy might be able to contact her if someone can remember who she was.

Re: DR. Z.

Pauline on 2/05/04 at 10:39 (143679)

Kathy,
While searching the net I found this article. I don't know the poster nor the physician he mentions in his post, but since you mentioned Penn.
I thought it might be helpful.

Perhaps you've already made contact with this physician, but for what it's worth I thought the information might be helpful.

Hello fellow sufferers and families,

Nice to find another LD resource. I am a 49 yr old WM. I was diagnosed with bi-lateral Plantar Fibromatosis in both feet and I have a large nodule on my left palm as well. I had surgery to remove 4/5ths of the Plantar fascia on both feet. Surgery on the right foot was performed in November 2002 and the wound finally healed in March 2003. The left foot was done in March and at this writing the surgical site is still not healed as yet. The hand is next surgery but I am putting it off as long as I can.

The results of surgery are mixed. I have nerve damage in both feet....It feels like someone is holding a Bic lighter under my right arch and I also have rather bad 'lightning strikes' where the nerve that runs from the second toes along side the foot and up the ankle to the knee sends a bolt up the leg to the knee. I also have sciatica from a lower back problem so I know its nerve related. I also have large areas of numbness in the ball of both feet. My surgeon says it may or may not improve. The left foot while still healing has dull throbbing pain from time to time. On the other hand the intense pain from walking on the nodules has gone.

I applied for SS Disability and was declined as you have to be pretty bad to get that. As I told my wife, I am good to go from the ankles up and the neck down. I am a Federal employee so I may now file for Federal disability which is less demanding than SS. If not I have a PRIVATE insurance policy that does cover me. Bottom line is that there is virtually no way I will ever get back to 'normal' and my days of working on my feet are over. I can stand and walk short distances but must get off my feet for long periods to recuperate from the building discomfort. This may improve over time but nothing is guaranteed.

From my experiences I suggest the following>>>>

1) NEVER let a podiatrist work on your LD. He's simply NOT qualified. ONLY a Surgeon EXPERIENCED in the field. I use Dr. Paul Hecht at Pennsylvania University Hospital. He's in top 100 docs in world in this field and very good.

2)Keep RECORDS of everything pertaining to your disease. You may need it. Start a daily diary and write your notes about pain, etc. so that you may have it for insurance purposes. We really need to start putting together legal briefs and case history so that we can support each other. Nothing like showing 30 case histories from other sufferers to your insurance carrier.

3)As we all know surgery is the LAST resort but if that time comes do your homework and find a Orthopaedic Surgeon in experience in this field.See rule 1 :-)

Thats about it for now. I am home everyday so if you are too drop me an e-mail and we can converse further.

Warmest wishes from Pennsylvania.
God bless you all and your effected love ones.

Doug

Re: heelspurs

KATHY H on 2/05/04 at 12:06 (143688)

DR PAULINE, THIS LETTER IS A GOD SEND. I THOUGHT THERE WAS NO ONE OUT THERE THAT DID NOT UNDERSTAND. I TRY TO TELL PEOPLE ABOUT THIS EVEN MY HUSBAND AND THEY DO NOT GET IT. MY HUSBAND THINKS THAT CARRYING ON EVERYDAY ACTIVITIES SHOULD BE NO PROBLEM. I TRY NOT TO LET ON HOW MUCH BECAUSE I AM INDEPENDENT AND REFUSE TO GIVE UP CERTAIN THINGS BECAUSE OF MY PROBLEM. IF I DON'T END UP WITH KIDNEY PROBLEMS DUE TO THE IBUPROFEN AND OTHER PAIN MEDS. I'VE BEEN TAKING FOR 3+ YEARS. I FEEL LIKE BLOWING 'DOUG'S' LETTER UP INTO POSTER SIZE, SO MY FRIENDS AND FAMILY CAN READ IT. INCLUDING SOME DR'S , WHO HAVE LOOKED AT ME LIKE I'M CRAZY. SO HERE'S TO YOU DOUG. I WAS GOING TO TRY SS AS MY NEXT STEP. I HAVE NOT WORKED OR DRIVEN A CAR IN 3+ YEARS. THAT UPSETS ME THAT THEY {SS} THINK THIS IS NOT DIABLING IN ANY WAY. KATHY H.

Re: heelspurs

Pauline on 2/05/04 at 15:27 (143697)

Kathy,
Perhaps some exciting news for you and the doctors on this site. Let,s take it one step at at time though, but this does provide hope.

Please understand the only information I know about this company is what I found out today. I'm not related to anyone there nor do I own stock in the company or gain financially from the information I am posting. This comes from pure research and making phone calls for you today. Here goes. I don't promise you anything, just sharing the information I found.

There is a small pharmaceutical company called PDLABS. They are a U.S. based company that is working on a new medicine to treat three specific specific condition. One of them is Plantar Fibromyotosis. One of the others affects the hands.

Here is their website http://www.pdlabs.net . The man that I spoke with wears many hats one of which is Technical Consulant his name is Brad Russell.

PDLabs developed a Transdermal Verapamil that has passed the first FDA clinical trials for use in treating Plantar Fibromyotosis and the Protocol for Phase II studies has been approved by the FDA which they are trying to get underway and why they are interested in finding doctors to do them.

According to Brad they have had success with this drug in treating your condition which is related to collegen type diseases and in providing pain reduction during treatment.

I'm only reporting what he told me. Hopefully our doctors will check into this for us.

The cream is an RX medication and any practicing physician can write the perscription for you.

Brad suggested you contact him either by email (email removed) or by phone 1 800 687-9014 for more information. PDlabs web site is http://www.pdlabs.net .

The company is currently looking for physicians to help them run double blind studies on this medication so I'm asking all the doctors who post here to please contact Brad Russell either by email or using the 800 number.

I would be especially pleased if they did because we would probably gain more insight into this new treatment and I value their opinion.

I'm not promising anyone a cure and I certainly don't want people running off wasting their money.

I'm simply posting information that I hope will prove helpful. I hope, as I said, our doctors will contact Brad. I plan to pass his name and email address on to a few other physicians with hope that the double blind studies will take place. Brad will be going to the annual meeting for Internal medicine in New Orleans, and said that they were also contacting the American Society of Podiatric Medicine.

So please doctors, contact him so we can find out more about this medication. Maybe there is a non surgical solution to Kathy's condition on the horizon.

Please Kathy as I said in the beginning, I'm making no promises but I certainly hoping this medication can help you. With the help of the doctors here perhaps we will find out more information.

Re: heelspurs

Pauline on 2/05/04 at 16:50 (143704)

Kathy,
Here is the website where I found that letter. I don't know if it's still a working forum or not, but there are a few email addresses for folks listed.

Who knows some may still be working addresses and you could talk to someone with the same problem your experiencing.

http://www.biospecifics.com/forum/readThread.asp?forumID=1&threadID=168

Re: heelspurs

Pauline on 2/05/04 at 16:58 (143705)

Kathy,
Well I found this too, so we might as well add it to the other messages. Brad mentioned this when I spoke to him so I'm glad I found it in print too. It makes me feel better about his product.

From: pdlabs

pdlabs

November 12, 2003

RE: Transdermal Calcium Channel Blockers

Filling prescriptions of topical verapamil for the treatment of connective tissue disorders such as Peyronie's disease.

Please be advised that William J. Easterling, R.Ph. holds U.S. utility Patent numbers 6,031,005 and 6,353,028 for the use of topically applied calcuim channel blockers for the treatment of Peyronis's Disease and related fibrotic connective tissue disorders. Prescriptions Dispensing Laboratories, Inc., San Antonio, Texas is the only U.S. pharmacy that has been licensed to provide this medication until such time that it becomes commercially available through the FDA approval processes.

Any entity, including but not limited to a referring insurance company, physician, pharmacy or hospital that compounds, uses, dispenses, or offers for sale topical or transdermal calcium channel blockers for the treatment of connective tissue disorders, is liable for damages and other remedies under applicable patent laws (see 35 U.S.C. 271, et seq).

On September 26, 2003 PDLabs was granted a permanent injuction as well as a substantial monetary award against the owner of one of a series of componding pharmacies whom PDLabs intends to direct its patent enforcement activities. PdLabs wishes to avoid taking legal action; however, the patents will be enforced.

I suggest that you discuss this issue with appropriate legal counsel and advise all appropriate personnel and management of the existence of these patents.

Patients presenting prescriptions to componding pharmacies, should be directed to PDLabs at 1-800-687-9014. Thank you for your cooperation.

Sincerely,

Jerry Easterling, R.PH.

CEO and Patent Holder

Prescription Dispensing Laboratories

Re: heelspurs

Pauline on 2/05/04 at 19:50 (143711)

I forgot to mention that Brad Russell from pdlabs also said they are using this for P.F. too.

Maybe Dr. Z, or Dr. Wander could work with them to set up a heelspurs double blind study. We'd certainly have folks willing to try the stuff for free.

Re: heelspurs

Pauline on 2/05/04 at 20:34 (143714)

Kathy,
I just realized you used Dr. in front of my name. That's wrong. I'm not a doctor I'm just a poster like you. I want you to understand that. I was just hunting the internet to try and find you help. Sorry you got confused.

Re: heelspurs

KATHY H on 2/05/04 at 20:46 (143715)

DEAR PAULINE, HOW'S THAT! THANK YOU SO MUCH FOR YOUR CONCERN AND I'M TRULY SORRY FOR THE MIX UP. I HAVE PRINTED OUT ALL MY RESPONSES AND HAVE HIGHLIGHTED ALL MY OPTIONS. I JUST POSTED ON THE WEB SITE YOU HAD JUST GIVEN ME http://www.BIOSPECIFICS . VERY INTERESTING THINGS OVER THERE TO. THEY MENTION LASER ANYTHING ON THAT? I AM LEANING MORE AND MORE AGAINST SURGERY AGAIN. I WOULD OF HAD IT IF I DIDN'T START RESEARCHING DEEPER INTO SITES LIKE THIS. IF I DIDN'T HAVE A COMPUTER, OH MY. THANKS AGAIN .KATHY H. PS. KEEP EM COMIN IF YOU HAVE ANY MORE I REALLY APPRECIATE IT

Re: heelspurs

Pauline on 2/05/04 at 21:02 (143717)

Kathy,
I have no idea the cost involved in that transdermal verapamil medication that PDlabs is manufacturing, but heck as long as you are checking into things why not that one too.

Maybe one of your own physicians would contact that lab and find out more about the product to then write you an Rx for it. You can also call their 800 number and check things out for yourself.

Hopefully the Pods that post here will follow up on this too. If it can improve the quality of life for P.F. and fibromyotosis sufferers without surgery or the cost of ESWT for P.F. that would certainly get a warm reception from people with these conditions.

If I find more information you'll get it. Enough for one day, but I'm really interested in finding out more about transdermal verapamil now.

Re: DR. Z.

Dr. Z on 2/05/04 at 21:24 (143718)

I recall this. She has a local tumer pressing on the lateral plantar nerve. She had vast improvement the last time she posted post surgery The reason I review her mri was because I was surprised when she told me that this local non-cancerous tumor was pressing on this very small specific nerve. After reviewing the MRI she was right

Re: DR. Z.

Pauline on 2/05/04 at 21:28 (143719)

Dr.Z,
How about contacting PDLabs? They are looking for Pods to help with FDA double blind studies. I'm certain they would want to talk to your group.

Re: DR. Z.

Dr. Z on 2/06/04 at 00:28 (143729)

Good idea. I just e-mailed Brad

Re: DR. Z.

Pauline on 2/06/04 at 09:30 (143750)

Please let us know what you find out. Since I plan to contact him again, I'll mention your name to him and how you found out about his company. I was hoping you, Dr. Wander and Dr. Ed would contact him.

Re: DR. Z.

Dr. Z on 2/07/04 at 11:30 (143854)

They e-mailed back and ask for my complete contact information which I gave them. Lets see what happens.