Morton's Neuroma

[livingwith]

I have rheumatoid arthritis. I have had four major surgeries for uterine fibroid disease. I have recently had surgery for skin cancer and have had to give up my career as a personal trainer. I live in pain every day now from three foot neuromas which have plagued me for 18 months. Two rheumatologists and three podiatrists missed my diagnosis. They gave me orthotics that killed me.
I just saw another foot surgeon who did not want to move the largest neuroma in my foot since I have RA I w...Read the full article

[Whiteeagle]

I hope I can give you hope by sharing my story which is very recent and so similar. I live in Australia and for 6 montha last year I had severe pain between the 1st (big) and 2nd toe-metatarsal area-ball of foot. I had all the tests-MRI, bone scan, ultra sound and they did not show a neuroma. My life ground to a halt as the pain was happening without warning, day and night ,every day and i could not walk . I left work, lost weight and fought depression but most of all I was in despair becasue I had not had a diagnosis. I saw top surgeons who because the tests showed nothing would not touch me. One suggested pain management specialists but how can you manage this type of pain that is not controlable by any means i could find-pain killers did nothing, footware did litle towards the end of the year as the pain got worse. I tried acupuncture-don't try this-it made it worse. Finally I went to an othopaedic surgeon in my local small rural city who on examiniation diagnosed a morton's neuroma. Aparently they do not always show up in the tests, also they are unusual between the1st & 2nd toes.! I begged him to operate even though the diagnosis was not confirmed. I signed a form taking repsonability for the operation and the fact that it may not provide a fix. I was desperate and like you living in some kind of hell with the 10/10 pain. He had done this operation before and was confidnet in what he was doing. He went in 'blind' and removed the nerve. 6 weeks later I am still on crutches but the awful shooting pain has gone. I had lots of post op pain and the foot is still very swollen and at times painful due to the healing & I still have to keep it elevated. The surgeon said it will takes months to settle. But best of all the patholgy confirmed a Mortom's Neuroma was excised, so the surgeon as well as I was so happy about this. I do not have your arthritic comlpications but i do wonder if the surgeons in the US are worried about litigation should the operation not work? Maybe look into this angle and see if you can find someone who is willing to give it a go. Find out why they won't operate-is it because it could create other problems? These need to be weighed up against the pain of neroma. I have read about ligament release operation for neuromas-could this be an option? Keep trying. You are not alone. Best of luck. I am slowly getting a life back and i do so hope you find a solution.
From Rosemary in Australia

[halvard]

Rosemary,

Thanks for your kind words. It is indeed unusual to have a neuroma in the first webspace. I have three on my right foot in between the first, second and third webspaces. Now the left foot is getting shooting pains. Lovely. I am proud that you went through with the surgery. How are you feeling NOW? Exactly how many weeks are you post-op? Are you able to exercise? Did you go in to the surgery in good shape?

I know what you mean with pain killers: what good are they if you can not even walk further than a NY City block?

Please send me prayers. On Monday, I go back to NY City for the next injection into the largest neuroma with cortisone and if it works, it is an indication that the surgeon will be able to remove the neuroma with a greater success rate. I am indeed not living life. This is not fun. My biggest fear is not pain rather, that I will be crippled for the rest of my life. Your story is real and sweet and full of hope. I can not thank you enough. Yes, the depression has set in, but i have become a Jewelry Designer and it is moving along much better than I had ever dreamed. Still - do you not ever think of re-growths and being on crutches? I have been wearing NB sneakers for 18 months, and if I could even wear sandals in the blasted humid climate in NY I would be happy. Let me know how you are feeling, Ro.

Lizzy

[Whiteeagle]

Dear Lizzy
Great to receive your reply. I have never joined a forum before so this is all very new. So here is another long email maybe from me!
I was in reasonable shape when I had surgery despite not having exercised for many months, I am not overweight and do not smoke. I am now 6 weeks post op and am able to swim and weight bare as comfortable, which it is not at this stage. The biggest problem is swelling and fluid build up at base of the foot in the area where the neuroma was -I think there is a haematoa (spelling)- a build up of blood in the cavity. My surgeon said it will take months for my foot to heal and become normal. I think maybe we have too higher expectations for post op recovery- we would like to be told a date that we will be able to walk normally etc but this is not always the case and it different for each of us. He said that there is nothing left for a stump neuroma to grow on and this will not happen with me. Before the op I feared having to keep living with the pain I was having 24/7 more than anything. Being on crutches or a wheel chair for the rest of my life would have been better than being told to live with the pain. Anyway I am on the mend and have some control over any pain and I also have some work at home as bookkeeper which I do with my foot elevated on a stool under my desk. Re shoes- I have been wearing NAOT brand sandals since the op and they are my most comfortable shoes because they have an innersole that supports the middle of the foot and distributes the weight evenly. I insert an extra cushioning innersole. Also a horseshoe shaped cut out of some sort of cushioning material can help take the weight off the neuroma if positioned on top of your innersole – I used this before the op.
Jewellery- would love to hear about that but this is probably not the place to go down that road – I am an artist printmaker
I wish you all the best for next week and look forward to hearing your news in the future.
Ro

[halvard]

Ro -

Hematoma? That sounds painful. You poor thing. May I ask what type of Surgeon you used? Did he have a lot of experience removing neuromas (100 or more)? How are you feeling now? I encourage you to do as much work as you can, and even to give yourself a break from bookkeeping to do some art. The positive thing that has come from this is the jewelry because I set up a whole studio and work station that keeps me off my feet and get paid to do art. But those sharp shooting pains. It feels like someone is injecting me. They are horrible. This condition is like a nightmare that won't go away. Yes, you have given me hope but it concerns me that your recovery is so long. My friends have healed in as little as 3 weeks. Have you gone for a second opinion?

Nice to hear from you too!!!!!!

Lizzy

[Whiteeagle]

Thanks Lizzy for your concern. I am seeing another specialist in about 6 weeks for another matter, he actually also thought it was a neuroma and referred me to the surgeon who operated after checking on his experience with neuromas which was extensive. The medical situation in Australia is a bit grim in as much as there is a huge shortage of doctors and specialists. There are only 2 foot specialist surgeons in Melbourne and the earliest appointment I could get was 12 months away!. Then of course I saw 3 other top specialists in Melbourne last year (one a neurosurgeon) who would not touch my foot due to no tests showing a diagnosis. My surgeon is an orthopaedic surgeon. Having to cut in not knowing absolutely if it was a neuroma and then not being able to visibly see it when in there meant he had to cut out a lot of nerve and flesh in an attempt to hopefully ‘get it’ which pathology confirmed he did. Also being in the area of the big toe means the ball of the foot is affected and this is a broad, sensitive weight bearing point. My operation and recovery do not conform to the 3 week ‘norm’ (unfortunately) and my surgeon warned me my recovery will take months. I have every confidence in what he did and am not overly worried about my slow recovery as the swelling will in time settle and the shooting pains that were hell are gone-this is such a miracle, it takes time to tune out from waiting them to happen, I am sure you know what I mean. I am also booked into to see 1 of the two foot specialists mentioned above in October, so if things are not all better he may have some answers. You are wise to be making informed decisions about your operation, it is important to investigate every aspect and make the right decisions. There is always a risk of failure that has to weighed, don’t you think? My operation was very unusual, so do not fear a slow recovery like mine as yours will probably be much faster.
More art sounds a good suggestion. Your jewellery is such a positive which may not have happened in other circumstances. Once again Good luck.
Ro

[halvard]

Ro,

I am so sorry the situation in Australia is grim. I want everyone who read this post to know that we all are very different: we all respond to surgery in our own way. I had a hysterectomy and was back at the gym in TWO weeks. Others took a year.

Then I got Rheumatoid Arthritis. Then Skin Cancer. Then Thyroid Disease. Then PPD. Then depression. Then sleep disorder. I swear, you would never know it, because I exercise and because I have hope in places where others do not.

Ro, you are giving me hope in a place where I do not have it. It is FABULOUS that you are going to see another experienced surgeon. You sound strong. I wish this site would allow us to share photos of our heart only as healing mechanisms, as opposed to commercial intents. I sell my jewelry because it makes people happy. I have a website because it was fun to design. I hate commercialism. I love hope.

I urge you to continue your art and for anyone who reads this post to consider how our disability can lead us in a new direction. I just am so very lucky to have found this medium and I KNOW that it is something that took me away from a career from which quite honestly, I had found no more internal satisfaction. There is always a bright side to everything. I think it is important that we all share our discomfort and deep frustration with our foot pain. We have to remember that we need to protect ourselves from situations that make us uncomfortable: i.e. going to parties where there is not comfortable sitting room, or to events that require lengths to walk to the bathroom. I went to the U. S. Open last year and we had to walk a mile just to get to the stadium. It was horrible, but I had felt the social obligation to go since we had executive box seats. What good does any of that do when you are in pain? We need to protect ourselves in ways that other people do not need to understand. If they stop being your friends, then you do not need them.

More important is getting the right medical care. I believe that if we move forward and trust those Drs. (hopefully everyone has been for at least three opinions)who want to help us. I also believe that we must have faith. Rosemary, this is where I am lacking. I need faith. I know you have it because your words make your voice sound strong. Continue to feel better. Know that tomorrow is my US injection, and I am taking the train home from the city, but you see - NY City has the nicest people in the world, so I know they will all help me get into a cab and on to the platform.

I just need some faith. Anyone who reads this post must please share that with Ro and myself.

XOXOXOX to you RO

Lizzy

[Whiteeagle]

Fantastic words Lizzie, sound advice to others and enriching insights. Go with what feels right because there are never any absolutes. May you find the peace that comes when there is no longer that electric stabbing pain -it is worth any prolonged recovery, worth taking risks, worth persevering to find help. I’ll be thinking of you tomorrow.

XOX Ro

[halvard]

Oh my goodness, thanks for thinking of me tomorrow - or today - it is 12:11 AM. What time is it there?
Oh yes, I am scared like a coward. This injection by Ultrasound Guidance does not feel like a pedicure, I assure you.

Oh thanks, and I will let you know how it goes.

Thanks, RO!

XOXOXO
Lizzy

[Whiteeagle]

Hi Lizzie again
5.15 in the afternoon and i am at my desk doing MYOB accounts -boring
Don't be scared, it sounds like they will be able to see exactly what they are doing.
XoX Ro