Tethered spine

Pixie51

Hi there
I just wondered if anyone has had experience of this and if so would be happy to share symptoms and treatment

Many thanks Pix x

Chloe_Scope

Hi @Pixie51 and welcome to the community! I hope others are able to share their experiences with you.

How are you today?

Pixie51

Hi there @Chloe_Scope not a bad day ty! Hope yours is a good one! ?

Chloe_Scope

Glad you are doing okay @Pixie51! Hope you have a lovely week!

janer1967

Hi @Pixie51 I hope you manage to find someone with similar condition who can help have you had a look round the site to see if there is a suitable thread 

Adrian_Scope

Hi @Pixie51. A few members of our members such as @Andy58 and @sooze77 have mentioned having a tethered spinal cord join in the past, but I really hope there'll be someone else around who might be able to relate to you about this.

sooze77

Hi, I have a split spine and a tethered spinal cord. What would you like to know? 

sooze77

Symptoms can differ a lot but these were mine:

Urinary retention - ended up using catheters exclusively, frequent UTIs, leg weakness and numbness / leg collapsing (particularly my left leg), pins and needles, severe lower back pain, difficulty in walking any distance or standing for any period of time, arm numbness (usually at night) and a lot more sadly!

I had surgery in March this year but it was sadly unsuccessful. Once my consultant had me opened up l was a bit like spaghetti junction and it was too dangerous for him to untether as the risk of total paralysis in my lower body was too high. I am waiting for my next appointment but it is unlikely there is anything else can be done and l am expecting to continue to deteriorate over time.

Andy58

My symptoms started with numbness in foot gradually spreading up leg and leg weakness, mobility getting worse.
Treatment, this is what neurosurgeon told me, any damage already done is irreversible, at best isurgery will maybe stop or slow down any further problems, at worst if it goes wrong you could end up with total below waist paralysis. You have to decide if the benefits outweigh the risks of surgery depending on how complicated the tethering is and surgery will be. In my case on the neurosurgeons advice surgery was not an option.

chiarieds

Hi @Pixie51 - Tethered cord syndrome (TCS) is found in some with my disorders, & is something I've done quite a bit of research on.

There is a thin strand of connective tissue that anchors the very end of the spinal cord. When this
is abnormal, stretching the spinal cord, and found with the symptoms below, it is called TCS.
A diagnosis of TCS is usually based on the following symptoms and signs:
● Urinary dysfunction (including incontinence, urgency and incomplete bladder emptying)
● Low back pain
● Numbness on the soles of the foot/feet
● Weakness in the leg(s)
● Abnormalities such as curvature of the spine (scoliosis) and foot deformities, e.g. club foot
(talipes equinovarus)

The surgery would be to cut this thin strand to release it.

Pixie51

Thank you all so much for sharing and I am so sorry to hear what you are all going through. I am awaiting an mri as have been getting pins and needles for around 2 years up to the knees and seriously bad calf pain, an area I call hip pain but it's actually my buttocks and lower back pain (had that for years now) also despite being an avid outdoor type finding short walks are my limit or the pain is too intense. I am also starting to get bladder issues not emptying fully so needing to go more. Have had uti issues from childhood. I was told I had sb occulta after an xray following a riding accident but told nothing to worry about. It's very common and hadn't had anything else explained. Since coming onto here in the last few days (at 51!) I have only just realised my dimple on my lower back could be a sacral dimple and linked. I was diagnosed with fibro 10 years ish ago but now I wonder if it is actually this. I have always said I felt it was spine related. The only thing that doesn't seem to tally up for me is the extreme fatigue and I get a lot of upper body pain too. The neuro is seeing me with the thought it could be Ms as GP motor tests showed significant weakness especially lh side and sensation loss and apparent nerve damage. I feel as if a light has been switched on after all these years of feeling like a hypochondriac. I know it may not be and let's face if who would want it to be but your experiences as so close to some of mine and with the realisation of the dimple, I think I had better talk this through with neuro when I eventually get to see him. 

sooze77

Bless you! It’s a lot to take it. I was born with spina bifida and operated on at 6 months old. Lived a relatively normal life, had 3 children and then started with all this about 3 years ago now. It’s all happened so fast. I’m 43. The problem with tethered cord is it’s relatively uncommon even with the doctors etc so can be hard to find the right consultant. I was initially passed from pillar to post which was so frustrating. My consultant is actually a specialist in tethered cord and even he only does about 2-3 on average of these ops per year. I hope you get the answers you need and then the help if they can. Just a note on the fatigue, l also get extremely tired, think this has a lot to do with the pain and living with the condition and symptoms every day. If you are on Facebook there are a few groups for tethered cord and they can be extremely helpful and supportive so maybe worth a look for you?! Some are in America but there is a UK one. 

Pixie51

Thank you so much @sooze77 I will have a look. Your experiences have been really helpful and it makes sense the tiredness relating to the pain. Am sat here in bed waiting for the tramadol to reduce the pain enough to be able to get up. What a life lol! 

Andy58

@Pixie51 Shine, the SB/Hydro charity/support organisation are having a live health Q and A session on Facebook at 3pm tomorrow, you might find that helpful and be able to ask them anything

sooze77

No worries anything you need to know please just give me a shout. I also take tramadol it’s the only thing that helps (although doesn’t take away a lot of the pain in all honesty) just takes the edge off. Best of luck with your consultant xx

Pixie51

Thank you @Andy58 that sounds really good, sadly I am at work so won't be able to attend. Do they do them often? And thank you @sooze77 I really appreciate it. Tramadol is the same with me. I have just found a BMJ article about a guy in Somerset who wS diagnosed in his 50's and his consultant is based at the hospital I am going to. Here's to hoping I might see him! 

Pixie51

Me again! @sooze77 I am aware that sadly your op wasn't successful I just wondered if there is an average recovery time for this type of op so you know x

chiarieds

Hi @Pixie51 - Hope it's OK for me to jump in here again. As @sooze77 has mentioned, I'm also unaware of consultants in the UK that routinely operate on a tethered cord....& often they just need monitoring. In my experience there is far more knowledge about this with USA neurosurgeons, & I have been in touch with a NY neurosurgeon for quite some time, who has helped with many tethered cord surgeries. As this is something that can happen with those with my associated disorder (Chiari 1 Malformation), I do follow research about this when I'm able. I also wonder if this is causing me problems as I have lower back pain, & a constant burning from the lower half of my buttocks, so I can't sit upon that area of my anatomy!

I will look into this further for you, as there has been much discussion over in the USA about Chiari 1 Malformation, tethered cord & Ehlers-Danlos Syndrome (which I have been diagnosed with + Chiari 1 Malformation has affected my family). There is due to be a 'virtual' conference with these USA specialists later on this month, which I am able to join.

In answer to your query, I did find this: https://www.winchesterhospital.org/health-library/article?id=935937

which suggests recovery time is a few weeks.

Do you mind saying which hospital you're going to?

I recently tried to help another member with her query about the best UK neurosurgeon to find as regards possible Chiari 1 Malformation. The Walton Centre in Liverpool was the best that I could find; they should also have an understanding about a tethered cord.

christian96

Hi @Pixie51! This is really something that you need to discuss with a neurosurgeon working in a hospital. The neurosurgeon will ideally have experience of issues of the brain and spinal cord. To answer your other question here is a online directory of UK doctors of all the medical specialties including brain specialists. 
https://www.myhealthspecialist.com/
The symptoms of tethered cord varies from person to person. I personally have no experience but I know of other people who have had reduced leg function, difficulty using the toilet and required surgery. Do you have open lesion spina bifida or not? Good luck.
I hope that you have some proper answers soon. St George's hospital in London is said to be really good if you need to see a neurosurgeon. Their neurosurgery department is well known globally for having realistic but high standards. I recommend starting there. Look at their website then call or email to make a appointment. They should have expertise of tethered cord and be willing to answer your questions. It is worth a shot. What are your other options? Can you go private? 

sooze77

@Pixie51 from my own experience, recovery was awful. I’ve had three c sections and numerous other surgeries and this was off the scale for me l have to say compared to those. I was in hospital for a week but felt l was rushed out due to COVID as my operation was a few weeks before lockdown. The pain was bad. Took a good month before l was resembling being how l was pre surgery and even then the nerve spasms continue now. It’s not something to be taken lightly. If they said they wanted to try again l honestly don’t know if l could put myself through it. Time will tell. Honest please ask anything you wish, we know everyone is different but it’s also so informative to hear others experiences etc when it’s something uncommon. Not sure if you are able to private message on here but that’s fine if you want to. I don’t mind at all. 

Pixie51

Thank you @sooze77 I am very grateful and yes I agree it was just to get your experience as its good to gain another's perspective and experience. I realise my own experience is different. In response to @christian96 and @chiarieds thank you so much for your replies. I have spina bifida occulta with a sacral dimple so closed. A decade of back issues motor and sensory issues and bladder problems but was diagnosed with fibro my spine has never been looked at but now I am showing signs of nerve damage to legs and weakness along with other more noticeable symptoms my doctor has referred me to neuro. I am going to Southmead in Bristol who happily has I believe Ian Pople who specialises in tethered cords so if it is that he will be the guy! I will obviously talk it through with him when I see him it's just with covid the waiting times are understandably pretty extensive and it's good to hear others experiences. I would love to hear any info you gain from the conference @chiarieds thank you. Private would be a struggle but I will see how long I am likely to be waiting for an appointment and look into it from there. Leg pain has got so bad now my life is a struggle and meds aren't really helping so hoping it won't be too long away! Thank you all for your help xx