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2 Surgeries and Sclerosing - and still so much pain...

Posted by Sheila S on 11/02/02 at 04:05 (098986)

I have had surgery twice on the same foot for Morton's Neuroma. The first doctor removed something, but I had worse (and constant) pain from that point on. One year later, I went to another doctor (mostly because I'd lost confidence in the first, but both are well respected and good surgeons, I believe) who determined there was a second neuroma in the same place and some obvious continued nerve contact that shouldn't have been there. I had surgery again in January 2002. He removed a neuroma and looked as deeply and thoroughly as possible and found no other possible cause of pain. I am STILL in constant pain.

We tried 7 sclerosing shots.... one shot, the 4th, apparently hit the mark and my foot swelled the next day and was extremely sore (apparently, ususally when this happens the patient suddenly begins to see much improvement). I think I can say I'm a tiny bit improved...but not enough to say I'm definitely improved and nowhere near enough to rate the discomfort as 'tolerable'. My doctor is just about as disappointed as I am - he's had great success with this procedure with original neuroma patients and has not had to perform a single surgery since he started using the sclerosing injections.

Has anyone else had a similar problem? Does anyone have any other suggestions or options to try? More than even the ability to walk and stand comfortably, I miss riding my horses...it's the most painful thing for me to do now.

Prior to the first surgery, my pain was only occasional but extreme (fiery, unbearable pain that shot to my toes and all the way to my knee!). Post-surger(ies) the pain is very local in the one spot and much like a good, strong smack on the 'funny bone' in your elbow - but always, with every step (particularly in the mornings when I first bear weight on it). I have to wonder if the neuroma's were the original problem...everyone's stories say pain to the toes, never pain up the leg. I'm not sure what to make of this.

Is there a chemical (other than sclerosing) that can permanently deaden that nerve? A permanent nerve block? My foot feels SO good right after the sclerosing injection (which includes temporary numbing medicine). I'd rather take the risk of permanent nerve block than live my life as I'm forced to now.....

Thanks for your time!
Sheila

Re: 2 Surgeries and Sclerosing - and still so much pain...

Ed Davis, DPM on 11/02/02 at 16:10 (099072)

Nerve pain can be different to localize at times. One thing I would look for is another neuroma in an adjacent interspace as opposed to going back to look at the same area.
Ed

Re: 2 Surgeries and Sclerosing - and still so much pain...

Dr. David S. Wander on 11/03/02 at 08:34 (099142)

I agree with Dr. Davis that there may be an adjacent neuroma. Additionally, after the surgeries and sclerosing injections there may be significant scar tissue causing additional problems. Prior to any additional treatment you may want to speak with your doctor regarding a gadolinium MRI (MRI with contrast) or diagnostic ultrasound to help determine the characteristics of the tissue.

Re: 2 Surgeries and Sclerosing - and still so much pain...

Sheila on 11/03/02 at 17:07 (099192)

Thanks for your response and suggestion. I am copying my last entry on the regular post page for your info. See last paragraph about tests. My doctor said he looked very thoroughly in January when he did the surgery (he did not do the first surgery the prior year) and found nothing else of which to be suspicious. Some more detail about where/when/how on the pain I have...

>>>I do not have hammer toes. I don't know about plantarflexed metatarsal heads, but I will ask on Monday. I think (assume only as he hasn't really said) that my doctor isn't really sure what the problem is, but thought probably a stump neuroma. Although I've not heard before that it attaches itself to the metatarsal. I'm the only patient he's ever had like this.

This particular pain began (immediately) after the first surgery, which was by a different doctor, and my current doctor said that when he performed the second surgery he looked around as thoroughly as possible to see if he could find/see anything else, and he didn't. He did remove another neuroma.

I am going to try orthotics for walking, but I don't believe they will help riding my horses due to the position and flex of the foot when pressure is placed in the stirrup.

I have not had a metatarsal pad at all. Should it have been used constantly since beginning the shots? or after the series was completed? I don't think my doctor is aware of this as he's not mentioned it, he hasn't mentioned orthotics either. (I've just read about it and a friend who's daughter is a doctor suggested I go see someone about them.)

My fourth toe is pretty numb on the inside, and my third toe is only somewhat numb on the inside. And that third toe is where the pain radiates to and directly under that side of the metatarsal joint between 3rd & 4th toes. There is no pain in the 4th toe at all nor on the 4th metatarsal. I can feel the tendon snap and pop on something there when I flex my toes or walk (or, I assume it's tendon?).

My doctor seems frustrated and puzzled, also and disappointed, the shots didn't work. He also knows I do alot of research and told me to let him know if I found anything new or helpful. And I will mention to him any and all possibilities you've suggested as something to research.

I have asked him, 3 times, if there isn't SOME kind of test, MRI, etc., that might show something and he said 'no, not really', and that the expense was large for the tests.

I don't know what to think.

Re: 2 Surgeries and Sclerosing - and still so much pain...

BrianG on 11/03/02 at 19:35 (099213)

Hi Sheila,

I had one Pod tell me that a bone scan was beter than an MRI, and they are cheaper. You could ask your doc about having one (bone sacn).

Regards
BrianG, not a doc

Re: 2 Surgeries and Sclerosing - and still so much pain...

Dr. David S. Wander on 11/03/02 at 19:38 (099214)

Yes, the tests can be expensive and a gadolinium MRI or diagnostic ultrasound is certainly not needed in the 'routine' diagnosis of a suspected neuroma. However, since you've been through 2 surgeries and sclerosing injections, I would certainly think that your doctor should not need any convincing of the value of some additional tests. I'm sure your pain justifies the additional expense of having a gadolinium MRI or diagnostic ultrasound. On a side note, in my experience a diagnostic ultrasound can be very helpful, IF the radiologist has a lot of experience. I send all my diagnostic ultrasounds to a major teaching hospital in Philadelphia. This is also true for MRI's of the foot and ankle. Diagnostic ultrasound can be very useful, if the images and reading is accurate.

Re: 2 Surgeries and Sclerosing - and still so much pain...

Dr. Z on 11/03/02 at 21:22 (099223)

If the tendon is snapping it could be that the joint is unstable and that is where your pain is coming from. This can be determined by an examination. The lenght of the toes could be abnormal . Yes an MRI could help but I don't believe it is going to add to anything. I really believe your problem is in the MPJ alignment or the toe alignment. When they did the second neuroma surgery was the incision on the bottom of the foot or one the top

Re: 2 Surgeries and Sclerosing - and still so much pain...

Sheila on 11/04/02 at 04:43 (099242)

The incision was in the top of my foot, exact same place for both surgeries. And the pain began before there would have been much scar tissue, immediately following the first surgery (as soon as I could wear tennis shoes again). As a side note, my mother and grandmother had active psoriasis (I don't); I mention this because I had one Pod. tell me a few years ago that this could cause problems with healing and excessive scar tissue (when I had my big toenails cut on each side and laser done for ingrown toenails). I am rather flat-footed - no one's told me this - I base it on my wet footprints, they're very wide in the center where I see that other people's show a narrow strip on the outside... very clinical! =)

[I still wonder if a neuroma was the problem in the very first place, is it typical for the pain to be only on occasion and shoot all the way up the leg? I was riding my horse, suddenly it was fiery, unbearable, burning pain from that area all the way up my leg. It was not immediately relieved when I took my riding boot off (not cowboy boots, but soft suede 'ropers' with a rubber sole, they feel and fit much like a tennis shoe with a heel). Over a period of 6 months or so this happened 3 or 4 times when I finally went to a Podiatrist. I decided to have the second surgery when I was at work one day, got up to walk around my desk and whatever is in there 'pinched' and wouldn't let up, I couldn't put my foot down at all (no pain as long as I held my foot up though). I had to get a ride home and be helped into the house. I layed down for about 20 mins. and when I got up to go to the bathroom it was fine.]

I'm trying to give you all the information I can possibly think of to assist in possibilities....as I said, I will pass on any possible research ideas to my Podiatrist...and will give him the website information if he wishes to consult with some of you. I believe he's a good doctor, but I am also at the point of feeling maybe I should try to find someone at perhaps UVA or somewhere...

AGAIN, many thanks to all of you for your consideration. It is much appreciated.
Sheila

Re: 2 Surgeries and Sclerosing - and still so much pain...

Sheila S on 11/04/02 at 17:19 (099331)

Dr. Z, I answered the below on the other page, and thought I'd copy it here so you would have all the information in one place.

>>>>>>>>>Re: Neuroma surgery/sclerosing - continued pain
Posted by Dr. Z on 11/02/02 at 09:57
Hi

This is a very frustating problem. Here are some thing to think about.
1 Do you have hammers toes on this foot. Do have any plantarflexed metatarsal heads on this foot

2. Does you podiatrist think you have a'stump' neuroma. This is where after cutting the nerve some of the nerve grows back and then is attached to the bottom of the metatarsal head

3. Sometimes if you wear a laced shoe and you skip the last eylette it will give the foot just a bit more room so the nerve isn't being compressed.

4. It is very important after the alcohol injection that a metatarsal pad is placed under the foot to move the weight of the adjacent bones away from the nerve

I hope that this is helpful to you.

Reply to Message # 99012

Re: Neuroma surgery/sclerosing - continued pain
Posted by Sheila S on 11/02/02 at 17:16
Thank you for responding Dr.Z. I do not have hammer toes. I don't know about plantarflexed metatarsal heads, but I will ask on Monday. I think (assume only as he hasn't really said) that my doctor isn't really sure what the problem is, but thought probably a stump neuroma. Although I've not heard before that it attaches itself to the metatarsal. I'm the only patient he's ever had like this.

This particular pain began after the first surgery, by a different doctor, and my current doctor said that when he performed the second surgery he looked around as thoroughly as possible to see if he could find/see anything else, and he didn't. He did remove another neuroma.

I am going to try orthotics for walking, but I don't believe they will help riding my horses due to the position and flex of the foot when pressure is placed in the stirrup.

I have not had a metatarsal pad at all. Should it have been used constantly since beginning the shots? or after the series was completed? I don't think my doctor is aware of this as he's not mentioned it, he hasn't mentioned orthotics either. (I've just read about it and a friend who's daughter is a doctor suggested I go see someone about them.)

My fourth toe is pretty numb on the inside, and my third toe is only somewhat numb on the inside. And that third toe is where the pain radiates to and directly under that side of the metatarsal joint between 3rd & 4th toes. There is no pain in the 4th toe at all nor on the 4th metatarsal. I can feel the tendon snap and pop on something there when I flex my toes or walk (or, I assume it's tendon?).

My doctor seems frustrated and puzzled, also and disappointed, the shots didn't work. He also knows I do alot of research and told me to let him know if I found anything new or helpful. And I will mention to him any and all possibilities you've suggested as something to research.

I have asked him, 3 times, if there isn't SOME kind of test, MRI, etc., that might show something and he said 'no, not really', and that the expense was large for the tests.

I don't know what to think.

Re: 2 Surgeries and Sclerosing - and still so much pain...

Ed Davis, DPM on 11/02/02 at 16:10 (099072)

Nerve pain can be different to localize at times. One thing I would look for is another neuroma in an adjacent interspace as opposed to going back to look at the same area.
Ed

Re: 2 Surgeries and Sclerosing - and still so much pain...

Dr. David S. Wander on 11/03/02 at 08:34 (099142)

I agree with Dr. Davis that there may be an adjacent neuroma. Additionally, after the surgeries and sclerosing injections there may be significant scar tissue causing additional problems. Prior to any additional treatment you may want to speak with your doctor regarding a gadolinium MRI (MRI with contrast) or diagnostic ultrasound to help determine the characteristics of the tissue.

Re: 2 Surgeries and Sclerosing - and still so much pain...

Sheila on 11/03/02 at 17:07 (099192)

Thanks for your response and suggestion. I am copying my last entry on the regular post page for your info. See last paragraph about tests. My doctor said he looked very thoroughly in January when he did the surgery (he did not do the first surgery the prior year) and found nothing else of which to be suspicious. Some more detail about where/when/how on the pain I have...

>>>I do not have hammer toes. I don't know about plantarflexed metatarsal heads, but I will ask on Monday. I think (assume only as he hasn't really said) that my doctor isn't really sure what the problem is, but thought probably a stump neuroma. Although I've not heard before that it attaches itself to the metatarsal. I'm the only patient he's ever had like this.

This particular pain began (immediately) after the first surgery, which was by a different doctor, and my current doctor said that when he performed the second surgery he looked around as thoroughly as possible to see if he could find/see anything else, and he didn't. He did remove another neuroma.

I am going to try orthotics for walking, but I don't believe they will help riding my horses due to the position and flex of the foot when pressure is placed in the stirrup.

I have not had a metatarsal pad at all. Should it have been used constantly since beginning the shots? or after the series was completed? I don't think my doctor is aware of this as he's not mentioned it, he hasn't mentioned orthotics either. (I've just read about it and a friend who's daughter is a doctor suggested I go see someone about them.)

My fourth toe is pretty numb on the inside, and my third toe is only somewhat numb on the inside. And that third toe is where the pain radiates to and directly under that side of the metatarsal joint between 3rd & 4th toes. There is no pain in the 4th toe at all nor on the 4th metatarsal. I can feel the tendon snap and pop on something there when I flex my toes or walk (or, I assume it's tendon?).

My doctor seems frustrated and puzzled, also and disappointed, the shots didn't work. He also knows I do alot of research and told me to let him know if I found anything new or helpful. And I will mention to him any and all possibilities you've suggested as something to research.

I have asked him, 3 times, if there isn't SOME kind of test, MRI, etc., that might show something and he said 'no, not really', and that the expense was large for the tests.

I don't know what to think.

Re: 2 Surgeries and Sclerosing - and still so much pain...

BrianG on 11/03/02 at 19:35 (099213)

Hi Sheila,

I had one Pod tell me that a bone scan was beter than an MRI, and they are cheaper. You could ask your doc about having one (bone sacn).

Regards
BrianG, not a doc

Re: 2 Surgeries and Sclerosing - and still so much pain...

Dr. David S. Wander on 11/03/02 at 19:38 (099214)

Yes, the tests can be expensive and a gadolinium MRI or diagnostic ultrasound is certainly not needed in the 'routine' diagnosis of a suspected neuroma. However, since you've been through 2 surgeries and sclerosing injections, I would certainly think that your doctor should not need any convincing of the value of some additional tests. I'm sure your pain justifies the additional expense of having a gadolinium MRI or diagnostic ultrasound. On a side note, in my experience a diagnostic ultrasound can be very helpful, IF the radiologist has a lot of experience. I send all my diagnostic ultrasounds to a major teaching hospital in Philadelphia. This is also true for MRI's of the foot and ankle. Diagnostic ultrasound can be very useful, if the images and reading is accurate.

Re: 2 Surgeries and Sclerosing - and still so much pain...

Dr. Z on 11/03/02 at 21:22 (099223)

If the tendon is snapping it could be that the joint is unstable and that is where your pain is coming from. This can be determined by an examination. The lenght of the toes could be abnormal . Yes an MRI could help but I don't believe it is going to add to anything. I really believe your problem is in the MPJ alignment or the toe alignment. When they did the second neuroma surgery was the incision on the bottom of the foot or one the top

Re: 2 Surgeries and Sclerosing - and still so much pain...

Sheila on 11/04/02 at 04:43 (099242)

The incision was in the top of my foot, exact same place for both surgeries. And the pain began before there would have been much scar tissue, immediately following the first surgery (as soon as I could wear tennis shoes again). As a side note, my mother and grandmother had active psoriasis (I don't); I mention this because I had one Pod. tell me a few years ago that this could cause problems with healing and excessive scar tissue (when I had my big toenails cut on each side and laser done for ingrown toenails). I am rather flat-footed - no one's told me this - I base it on my wet footprints, they're very wide in the center where I see that other people's show a narrow strip on the outside... very clinical! =)

[I still wonder if a neuroma was the problem in the very first place, is it typical for the pain to be only on occasion and shoot all the way up the leg? I was riding my horse, suddenly it was fiery, unbearable, burning pain from that area all the way up my leg. It was not immediately relieved when I took my riding boot off (not cowboy boots, but soft suede 'ropers' with a rubber sole, they feel and fit much like a tennis shoe with a heel). Over a period of 6 months or so this happened 3 or 4 times when I finally went to a Podiatrist. I decided to have the second surgery when I was at work one day, got up to walk around my desk and whatever is in there 'pinched' and wouldn't let up, I couldn't put my foot down at all (no pain as long as I held my foot up though). I had to get a ride home and be helped into the house. I layed down for about 20 mins. and when I got up to go to the bathroom it was fine.]

I'm trying to give you all the information I can possibly think of to assist in possibilities....as I said, I will pass on any possible research ideas to my Podiatrist...and will give him the website information if he wishes to consult with some of you. I believe he's a good doctor, but I am also at the point of feeling maybe I should try to find someone at perhaps UVA or somewhere...

AGAIN, many thanks to all of you for your consideration. It is much appreciated.
Sheila

Re: 2 Surgeries and Sclerosing - and still so much pain...

Sheila S on 11/04/02 at 17:19 (099331)

Dr. Z, I answered the below on the other page, and thought I'd copy it here so you would have all the information in one place.

>>>>>>>>>Re: Neuroma surgery/sclerosing - continued pain
Posted by Dr. Z on 11/02/02 at 09:57
Hi

This is a very frustating problem. Here are some thing to think about.
1 Do you have hammers toes on this foot. Do have any plantarflexed metatarsal heads on this foot

2. Does you podiatrist think you have a'stump' neuroma. This is where after cutting the nerve some of the nerve grows back and then is attached to the bottom of the metatarsal head

3. Sometimes if you wear a laced shoe and you skip the last eylette it will give the foot just a bit more room so the nerve isn't being compressed.

4. It is very important after the alcohol injection that a metatarsal pad is placed under the foot to move the weight of the adjacent bones away from the nerve

I hope that this is helpful to you.

Reply to Message # 99012

Re: Neuroma surgery/sclerosing - continued pain
Posted by Sheila S on 11/02/02 at 17:16
Thank you for responding Dr.Z. I do not have hammer toes. I don't know about plantarflexed metatarsal heads, but I will ask on Monday. I think (assume only as he hasn't really said) that my doctor isn't really sure what the problem is, but thought probably a stump neuroma. Although I've not heard before that it attaches itself to the metatarsal. I'm the only patient he's ever had like this.

This particular pain began after the first surgery, by a different doctor, and my current doctor said that when he performed the second surgery he looked around as thoroughly as possible to see if he could find/see anything else, and he didn't. He did remove another neuroma.

I am going to try orthotics for walking, but I don't believe they will help riding my horses due to the position and flex of the foot when pressure is placed in the stirrup.

I have not had a metatarsal pad at all. Should it have been used constantly since beginning the shots? or after the series was completed? I don't think my doctor is aware of this as he's not mentioned it, he hasn't mentioned orthotics either. (I've just read about it and a friend who's daughter is a doctor suggested I go see someone about them.)

My fourth toe is pretty numb on the inside, and my third toe is only somewhat numb on the inside. And that third toe is where the pain radiates to and directly under that side of the metatarsal joint between 3rd & 4th toes. There is no pain in the 4th toe at all nor on the 4th metatarsal. I can feel the tendon snap and pop on something there when I flex my toes or walk (or, I assume it's tendon?).

My doctor seems frustrated and puzzled, also and disappointed, the shots didn't work. He also knows I do alot of research and told me to let him know if I found anything new or helpful. And I will mention to him any and all possibilities you've suggested as something to research.

I have asked him, 3 times, if there isn't SOME kind of test, MRI, etc., that might show something and he said 'no, not really', and that the expense was large for the tests.

I don't know what to think.

Re: 2 Surgeries and Sclerosing - and still so much pain...

pdc on 8/03/09 at 21:11 (259354)

I have been down that exact same road of foot pain and in fact I am still there. I had a Mourton's Neuroma removed after steroid shots and seven sclerosing shots did not work on my left foot. I then was told by the doctor who did the foot surgery that he felt it was not a foot problem but a back problem. I have been to three neurologists, 4 orthopedic surgeons, and numerous general practitioners to no avail. I could star on the Missed Diagnosis show!!

I went to a University Hospitol and had a complete work up done and they discovered I have spinal stenosis- a narrowing of the spinal canal- an arthritic condition that causes pinching of the nerve root that goes all the way to the foot. My left leg and foot hurt constantly. I take Lyrica for pain and can function fairly well. I just had an MRI of my back again today - don't know results yet. I feel your pain!!! My advice - don't have any more foot surgery - it may actually be something else causing the foot pain. Hope this helps - pdc.