Tarsal tunnel syndrome

Thank you so much for your reply.

I will keep you informed.

I was diagnosed 4 yrs ago, but then they didn't seem to think that was the problem that was causing the horrific stabbing pain.

So i was sent to a pain clinic and given amitriptyline, radiofrequency ablation, also steroid injections at the area of the stabbing pain. they thought it was a damaged sural nerve. No wonder nothing has worked!!

So pain clinic referred me back to an ankle and foot consultant. This is where i am at present waiting for my next appointment.

Oh so sorry. Sounds like you have explored all avenues

What about acupuncture !

Hi! Going to see what foot and ankle consultant suggest.

But That is a good idea!

Thanks xx

Good luck

Hey Deborah

You manage to find any relief with your Symptoms yet!! I’m on gabepentin now and also being sent to a neurologist! Still suffering :-( 

Hi Valotte

Thanks for replying.

I am just off to ankle and foot consultant I will let you know what he says and suggests.

xx

Hi Valotte

Consultant says i have very severe tarsal tunnel syndrome but he doesn't know if it's caused by compression or it's a damaged nerve. To find out which oneit is causing the problem he is going to inject along the side of the tibia nerve with steroid. If this works it means its compressed which he can operate on easily. But if it doesn't work it means I've got a damaged nerve what's your need cutting out but it comes along with a lot of complications and can make them matter worse

These are my systoms

pins and needles all over foot

Twitching of muscles in foot ankle and calf

Excruciating intermittent stabbing pain like somebody has stabbed you in the foot with a scalpel knife that's red hot and electrified.

back of heel pain.

right side pain in foot at times when walking.

Do you have any of these symptoms? If so which ones?

what kind of operation are you having?

TTS is very rare so we must be special lol x

Hi Deborah,

I like your comment about being special  Your consultant sounds right on from what I've learned.  I had the injection and it didn't work.  My foot was so numb after injection that I needed crutches because it felt too wierd. Don't plan anything the rest of the day after you have it. The surgery is tarsal tunnel release and I fear nerve damage.

I had been having some calf pain for awhile and one day I reached up to turn the radio on and I couldn't stand on the ball of my foot.  Intense foot cramping, heel and calf pain. Did alot of ice and rest as no doctor could agree what was going wrong.  I have been through 4 types of physical therapy and my calf calmed down.  Consistent achy pain in heel, the tingling drives me batty, and stabbing pain throughout foot  and ankle with no consistent pattern.  Wearing a cam walker has helped alot, but dr says I can't wear the walker forever.  I have tried all conservative therapy - with no relief and I am sensitive to meds.  Currently nortriptyline has helped some with pain, lots with depression that's gone with it.  Do keep me posted on your progress!

Thanks so much for your reply.x

O dear am sorry to here its nerve damage. A little bit more difficult to operate on. i am hoping mine isn't, but have this feeling it most probably is.

May i ask you to explain the stabbing pain in a little more detail that you get? , like the area of the foot? and 1 out of 10 pain level? does it come on when your least expecting it? Do you feel burning?, does it feel like electric shock?

I ask as i have never felt pain like it in my life. Also i didn't realise the body could produce such unbearable pain. I passed out once with it. I scream at the top of my voice and beg it to stop! it even makes my throat sore, and if anybody is around me they go into shock.

it only lasts for a few seconds. I've had to give up my profession because of it.

They give me amitriptyline 50 milligrams at night, it has reduced the pain level from 10 to a 8. Some times I could go for weeks and months without it happening. Then BOOM!

When this happens i take diazepam and wrap my foot with a bandage tightly, then take a extra amitriptyline then it doesn't go off again, but I don't want to have to take diazepam regularly. only the amitriptyline is what i take regularly. I was also given gabapentin but I didn't like taking the two together.

I am in a boot at the moment for 3 months, But thats for my other foot I've lost stability in my fibula joint. Am also waiting to see my knee surgeon. I have had 2 total knee replacement. My latest one I have just been diagnosed with hamstring tendonitis so i have a splint for that till i see what management plan my consultant has for me.

i see my GP tomorrow am going to ask for a boot on my tarsal tunnel syndrome foot. That way i will not be walking on a limp and putting pressure on my back and also on my knees. ouch!

Oh my goodness I have waffle on.😂It's just a relief to find somebody that has the same problem. i want to give u a big HUG! 🙌

Do you ever wonder if 1 ailment leads to the other?   The other issue for me is my low back and the doctors were confused as to where the pain began and if they were connected.  I feel for you that your other foot is giving you issue.  I couldn't imagine.  The shooting pain when i reached up was the worst through all this and that would be a 9.  It started in my toes and shot up through my calf.  After that my foot and leg would twitch and cramp.  felt like my toes were curling up, but they weren't. And there was this knocking throughout my calf and foot.  I've had to adjust my lifestyle greatly and stop working.  Since then I have much tingling in foot - both sides of low ankle mostly and my heel constantly hurts around the outer edge.  It's more of an ache than anything, but if i step wrong i get the shooting pain, about a 5 these days.  Because my pain moves from 1 side of the ankle to the other and all over my foot - like the sesamoid under my big toe, he says it's a nerve issue.  It's lead to many doctors looking at me like I was a nut.  My GP for 10 yrs said it was all in my head and prescribed me klonopin.  I found another GP. I had too many side effects with lyrica and gabapentin. I tried acupuncture, chiropractice, rolfing, massage, physical therapy and even had a cortisone shot in my heel (ouch!).  been tested for ms, arthritis, and have seen quite a few specialists.  The surgery is a last resort for me. I feel like I have nothing left to lose. 

I am sorry you are dealing with this pain too.  And a big hug back to you! 

Yes i had a MRI scan on my back as they thought it could be connected. They did discover i had arthritis of the lower back. And sent me to physio. But with know effect.

I had cortisone injections at the place of the stabbing pain with out a scanner to show them where exactly the nerve was. which didn't help... As resent studies say that a injection into the nerve can course more damage. And also had radiofrequency ablation again with out guidance.

Omg totally understand how horrid the pins and needles and muscle twitching and cramps are. still having them.. and at times have lost all sensation of my leg. Been tested for MS to! If it wasn't for my New pain doctor( as my old one left ) recommending for me to see a foot and ankle specialist. As he noticed on my notes 4 yrs ago after having a nerve conduction test that noted i have TTS. I would be still treated for the wrong nerve. I have seen 3 foot and Ankle consultants over time. 1 sat back in his chair and said nothing i can do! The second sent me to a podiatrist 4 insoles which I wore for 2 days and ended up having plantar fascitis.

So 3rd time lucky... but I think that is because over time ankle and foot specialist are now more informed of the condition.

Hope all goes well for your op....keep me updated we are Warriors! 👍 and special 😂

Big hug..xx

Hugs back to you!  It is certainly nice to know I am not alone - even though I wouldn't wish this on anyone.  Being a warrior is not that easy.  I've had to figure out a way to advocate for myself going to all these doctors.  And have met some arrogant and some kind people.  I'm not who I was 2 years ago and some days have been pretty challenging.  I've learned some lessons on how to take better care of my body through this.  I am nervous about the surgery and the pain to come after.  It is a foot and ankle specialist that I'm seeing now and I trust him the most of all the doctors I've seen.  When do you have your next appointment?  Wishing you well today and do keep me updated!

Totally understand.xx But through are journey we both had to managed by strength! Right from the beginning Ive broke down in tears and became angry and felt a nuisance, especially to my family. My young daughters and husband have suffered to. Ive sent complaint letters to The NHS Trust about the appalling behaviour of some of the medical staff and lack of understanding. Ive even had a Dr laugh in my face when i was being serious about chopping my foot off...Ive had nurse whisper in my ear saying nothing we can do about that and sniggered. Been taken to A&E and my husband told them i needed a separate room as if my spasm went off it will upset the rest of the patients in the waiting area they laughed, It did go off and about 5 security guards came running in thinking somebody had been stabbed. They soon got me seen. Ive spent money to see private specialist they also couldn't help apart from sending me to a private pain specialist which got me a fast track to be seen in the NHS pain Clinic, and thats another story. You and I have had similar experiences. And through are pain and continuous battles we have not given up and have finally both found a specialist that listens and understands and is confident to put it right. He told me I am a tough cookie! To right! ...Both you and me have battled through, in pain and having to deal with other health issues as well! Dam right we are Warriors!

I have other leg foot and Ankle problems as you know. I was taken to A&E yesterday because i was loosing feeling in my legs and in a lot of pain. they stuck me in a tiny wheel chair. Was not offered any pain relief nor a trolly and put in a room full of people and told me i had a 2 hour wait. I couldn't handle it. so got someone to pick me up and send me home. Now waiting this morning for my doctor to ring as need a assessment..... I try and help my friends and others with health issues that dont have the strength to voice there concerns. I am truly disgusted on how they have been treated, should say NOT been treated ...but not surprised.

I have worked as a paramedic physiotherapist assistant and community care. So i know when someone is not getting the care they need.

Of course you are nervous you wouldn't be normal if you were not. And the specialist truly understands this. Yes in any operation there are risks, But the benefit of success outweighs this, otherwise he wouldn't do the op. I find drinking Camomile tea helps with nerves .. also paracetamol.

Both of us will get through this without a doubt. we have found one anouther to help each other through this battle. Thankyou to Patients website.

I am waiting for a letter to tell me of my next appointment date. i will let you know.

Do you live in the UK?

Are NHS is falling apart.

Am so sorry you have so many battle scars to the point it has changed you as a person in the last 2 years. Life sure does hold its challenges!!

I am planning in starting a help line for TTS but i don't think i will be getting many calls as its so rare 😂😂

Love to you and loads of hugs

kimmy xx