Mentally and Emotionally Vulnerable at the Moment

LCB1012

Hi all.   This is going to be long, so I apologise in advance.

I grew up thinking I "just" had eczema and asthma. 

12 years ago at the end of March, at age 26, I went for an MRI scan because of nerve pain in my arms.  Another MRI and CT Scan later, they found I'd been born with a Chiari Malformation, Syringomyelia, and Tethered Cord Syndrome.  They operated the next day, removing bone.

Fast forward to a year ago tomorrow, I'd taken my two dogs for a walk, come back, and was browsing the internet on my tablet, when I suddenly felt unwell.  When I went to get up and walk, I felt unsteady on my feet, and steadied myself by placing my hands on the wall. 

Mum took me to A&E, who were dismissive, and I get the distinct impression thought I was drunk.  I'm not a big drinker, and by that point, had probably not had a drink since Christmas (and even that was a low alcohol drink).  My brother took my dogs to his to take care of them for me.

Next day, still feeling no better, and unable to steady myself to even take a single step, I phoned my GP.  "Give it 48 hours, and if no better, ring back."

48hrs later, I phoned them back and got a telephone consultation, which led to a face-to-face appointment so she could see for herself what the problem was.  She said my legs were weaker than they should be for a woman of my age, and sent me for an emergency appointment with a neurologist.

Neurologist was dismissive too, and said it was "psychological FND", but that to "reassure" me, she'd send me for MRI and blood tests and physio.  If that didn't work, I'd be referred to a psychiatrist.   I complained.  Her secretary (and the neurologist) say I have a problem with the word "functional" and it seems, passed that information on the my physiotherapist, because he seemed to think I had a problem with the word, too.  I don't.  There's obviously something functionally wrong.  I just have a problem with a neurologist diagnosing me with a psychological condition before she'd even conducted any tests.  She sent me for a scan of my lower back.  Apparently, there was nothing there that could explain my symptoms.  

I responded by requesting a copy of my scans, which revealed (in addition to the 3 conditions I already knew about):

• My neck is straighter than it should be.  According to Google, this is known as "Text Neck".  In my case, it's probably been caused by reading actual books and years of staring at the ground as I walked.
• 4 bulging discs, 3 of which are in my neck.
• Narrowing of the neuroforamina.
• There's a split in the cord.
• Spina Bifida Occulta - and I'm guessing it's that which is tethering my cord.  

I was referred back to my neurosurgeon at a different hospital to the one in which I'd seen my neurologist. 

In the meantime, my physiotherapist left, and handed me over to his boss, a Level 5 physio.  On a hunch, she tested the strength of my legs by asking me to lie down and raise one foot, then the other, hold for 5 seconds, and then release.  They felt like ton weights - especially my right leg, which is often the worst.

My neurosurgeon (now a spinal consultant) sent me for a whole spine x-ray, and I saw him in clinic on Friday. He's going to send for my MRI images, because the other hospital hadn't sent them over, apparently.  I wish I could say I was surprised, but somewhere between the two hospitals, my referral itself got lost, something I didn't know until I chased it up.

 He asked me for my history and asked me to stand and walk without the walking stick I've been using since the summer.  I managed two steps, and both feet glued themselves to the floor (this is the main problem I have - it happens with or without my walking aids, and it's completely random - sometimes I can walk reasonably well for about 5mins, and then the strength in my legs just go, and I can't physically put one foot in front of the other).  He asked me to take just a couple more steps - I told him I couldn't.  It took another minute or so before I could move my legs at all.  They were still stuck to the ground, but I managed to turn first one foot, and then the other and head to the nearest chair.

He's sending me for nerve conduction test.


Symptoms:

• My feet become glued to the ground.  This can be just one foot, or both.
• My lower legs can feel like there's a ball and chain around my ankles.
• My knees suddenly give, and I feel like I'm sinking to the ground.  I don't just fall like a stone, but it's like I can feel gravity pulling me down.  I can stand for, at most, 3 minutes at a time.
• Balance problems.  This seems to be worse in the house, where I'm stumbling from the wall to the baby gate across mu kitchen door (my lurcher is a counter surfer).

All of this is playing with my mind, and yesterday, I was in crisis, which is why I signed up.  Every time I have a good day, every time I can walk across the room unaided, every time I sit and my legs feel normal, every time I manage to walk along the street I start thinking "is the neurologist right?  Is this all in my head?" Then I think of those images, and what the (second) physiotherapist noticed, and all the times I've been going about my day and my legs have suddenly become uncooperative.  

I feel like I'm losing my mind, like I'm going crazy and don't know what's real and what isn't anymore. 

I don't know why I'm posting this, what I hope to achieve, apart from getting it off my chest, but writing it has been cathartic.

Thanks for reading.  I applaud anyone who makes it this far.

LCB1012

Thank you.

Libby_Alumni

Hey @LCB1012, 

Thank you for sharing your story in such a vulnerable and authentic way. You've been through a lot and it's wonderful that you're reaching out for support on the community. 

We really appreciate that you've shared so much information with us. Things seem understandably tough given that your symptoms are fluctuating a lot, but only you know your own pain and what it feels like to be living in your body. We're so grateful that you've shared your story with us, but do you feel as though you have enough support from family/friends etc? Speaking to people about how you feel is really helpful and can help get things off our chests. I know when I feel a little fed up and low, that I engage in activities that support my wellbeing. For example, reading, meditation, and getting some sunlight. Do you have any activities that you like to do when things get a little overwhelming?

I hope you get some answers from the nerve conduction test and please keep us updated with the process. 

Take care now and we will speak to you soon.

Libby

LCB1012

Hi Libby.

Family and friends (online, mainly, as I'm not sociable) have been a massive support over the last year.  They've kept me sane.

As for hobbies, as I said in my Introduction thread, I have quite a few hobbies.  I find needlecraft particularly therapeutic when things get really tough.

Thanks.

Libby_Alumni

Hi @LCB1012,

I'm so glad to hear that you've been connecting with your family online (you've also now gained another family in the online community ). 

I can imagine needlecraft is very therapeutic, I wanted to start cross stitch but haven't got round to doing it yet, but hopefully I will in the next few months. Have you done cross stitch before?

Libby

chiarieds

Hi @LCB1012 - & welcome to the community. My family has Chiari 1 Malformation associated with Ehlers-Danlos Syndrome (the hypermobile type).

I do appreciate what you're going through, having in the past been seen by an orthopaedic consultant, rheumatologists, neurosurgeons, neurologists & geneticists (some of these with my children)!

If our family is anything to go by, you can have many symptoms; some fluctuating. I remember my son hanging onto the doorway due to ataxia (that apparent 'drunkenness') when he was younger, & I have had intermittent problems with it. However your neurologist is likely right that it's all in your head, i.e. your brain. No-one ever said it to me, other than my last rheumatologist. He was so sure that my neurological problems were worse than my rheumatological problems, &, because I'd already been seen by the neurologist in his hospital, decided to give me a neurological exam himself. He found I had overactive reflexes in all of my limbs (hyperreflexia), which on its own, indicated I had to have a problem coming from the spinal cord in the cervical region, or the brain itself. He also found other anomalies.

It will likely not surprise you however, that in the first important medical paper looking into Chiari 1 Malformation by Dr. Milhorat (who went on to found the Chiari Institute in New York; the world's first centre specialising in Chiari) in 1999, studying 364 patients, they found that by the time they had their diagnosis confirmed, nearly 60% had been told by at least one Dr that their problems were of psychological origin.

When you mention that you had surgery 12 years ago, may I ask what that was?

I really have read your post with more than interest. I'm a long retired physio who had to research to find out what my family's problems were.....realising we had Ehlers-Danlos Syndrome was easy; finding out about Chiari 1 Malformation a lot harder. It seems to me you are very positive in wanting to find out more, so, to that end, I think you may find the following links helpful. Please see the video in this link about Tethered Cord Syndrome by Dr Iskander, altho he specialises in paediatric patients, he does mention adults (SBO & a split spinal cord, etc) : https://forum.scope.org.uk/discussion/73479/the-tethered-cord-syndrome-what-is-it-video

Please also have a look here at the American Syringomyelia & Chiari Alliance Project's (ASAP's) website; the one I've found the most informative: https://asap.org/

& at the ASAP's most recent videos of past conferences, tho there are earlier ones: https://asap.org/conferences/virtual-conference/2020-conference-videos/

Hoping your nerve conduction studies (been there too) either rule things in, or out.....after all if it's a peripheral nerve problem, then it can't be anything to do with your Central Nervous System, i.e. brain or spinal cord. Also hoping your MRIs may help.

Chiari 1 Malformation isn't easy, & can have a multitude of symptoms which can mimic other neurological disorders, but hoping you look into it more. My best wishes, & kindly let us all know how you get on.

LCB1012

Libby_Scope said:

Hi @LCB1012,

I'm so glad to hear that you've been connecting with your family online (you've also now gained another family in the online community ). 

I can imagine needlecraft is very therapeutic, I wanted to start cross stitch but haven't got round to doing it yet, but hopefully I will in the next few months. Have you done cross stitch before?

Libby

Morning @Libby_Scope

Yes, I do cross stitch.  In fact, it was cross stitch that got me into needlecraft, and every now and again, I do some of my own designs by eye.  Once I log into the site on my phone, I'll upload some pics.

chiarieds said:

Hi @LCB1012 - & welcome to the community. My family has Chiari 1 Malformation associated with Ehlers-Danlos Syndrome (the hypermobile type).

I do appreciate what you're going through, having in the past been seen by an orthopaedic consultant, rheumatologists, neurosurgeons, neurologists & geneticists (some of these with my children)!

If our family is anything to go by, you can have many symptoms; some fluctuating. I remember my son hanging onto the doorway due to ataxia (that apparent 'drunkenness') when he was younger, & I have had intermittent problems with it. However your neurologist is likely right that it's all in your head, i.e. your brain. No-one ever said it to me, other than my last rheumatologist. He was so sure that my neurological problems were worse than my rheumatological problems, &, because I'd already been seen by the neurologist in his hospital, decided to give me a neurological exam himself. He found I had overactive reflexes in all of my limbs (hyperreflexia), which on its own, indicated I had to have a problem coming from the spinal cord in the cervical region, or the brain itself. He also found other anomalies.

It will likely not surprise you however, that in the first important medical paper looking into Chiari 1 Malformation by Dr. Milhorat (who went on to found the Chiari Institute in New York; the world's first centre specialising in Chiari) in 1999, studying 364 patients, they found that by the time they had their diagnosis confirmed, nearly 60% had been told by at least one Dr that their problems were of psychological origin.

When you mention that you had surgery 12 years ago, may I ask what that was?

I really have read your post with more than interest. I'm a long retired physio who had to research to find out what my family's problems were.....realising we had Ehlers-Danlos Syndrome was easy; finding out about Chiari 1 Malformation a lot harder. It seems to me you are very positive in wanting to find out more, so, to that end, I think you may find the following links helpful. Please see the video in this link about Tethered Cord Syndrome by Dr Iskander, altho he specialises in paediatric patients, he does mention adults (SBO & a split spinal cord, etc) : https://forum.scope.org.uk/discussion/73479/the-tethered-cord-syndrome-what-is-it-video

Please also have a look here at the American Syringomyelia & Chiari Alliance Project's (ASAP's) website; the one I've found the most informative: https://asap.org/

& at the ASAP's most recent videos of past conferences, tho there are earlier ones: https://asap.org/conferences/virtual-conference/2020-conference-videos/

Hoping your nerve conduction studies (been there too) either rule things in, or out.....after all if it's a peripheral nerve problem, then it can't be anything to do with your Central Nervous System, i.e. brain or spinal cord. Also hoping your MRIs may help.

Chiari 1 Malformation isn't easy, & can have a multitude of symptoms which can mimic other neurological disorders, but hoping you look into it more. My best wishes, & kindly let us all know how you get on.

Morning  @chiarieds

Thanks for those links.  I'll have a look at them later.   I never thought it could be the chiari malformation.  I've googled Type 1 and Type 2, and it looks like mine Type 2 (that was never explained to me - or if it was, it didn't register.  To be fair, I was staring at a massive white blob in my spinal cord that even my untrained eyes knew shouldn't be there).

The surgery was foramen magnum decompression, removing bone from my skull/spine.

Danielle_2022

Hiya again @LCB1012,
It is so nice to hear more of your story after connecting with you on another thread, though I am sorry that it’s been such a difficult time.

I have Cerebral Palsy and am a full-time wheelchair user, as I think you already know. With that said, although our experiences are wildly different, I do know what it’s like not to be able to trust your body. To want things that are beyond your physical capability, especially the apparently simple tasks of walking or standing unaided. You’re allowed to feel frustrated when these symptoms fluctuate, just remember: just because they fluctuate doesn’t make them any less real. Your experiences are valid and I see you, no matter what any medical professional says.

I hope that the upcoming tests bring you some answers because I know how powerful a diagnosis can be. The journey is not a linear one, but we’re here to support you, on both good days & bad. I’m glad that you have lots of other support with family and friends, too. 

I can’t wait to see some pictures of your cross stitch designs! 

LCB1012

chiarieds said:

Hi @LCB1012 - & welcome to the community. My family has Chiari 1 Malformation associated with Ehlers-Danlos Syndrome (the hypermobile type).

I do appreciate what you're going through, having in the past been seen by an orthopaedic consultant, rheumatologists, neurosurgeons, neurologists & geneticists (some of these with my children)!

If our family is anything to go by, you can have many symptoms; some fluctuating. I remember my son hanging onto the doorway due to ataxia (that apparent 'drunkenness') when he was younger, & I have had intermittent problems with it. However your neurologist is likely right that it's all in your head, i.e. your brain. No-one ever said it to me, other than my last rheumatologist. He was so sure that my neurological problems were worse than my rheumatological problems, &, because I'd already been seen by the neurologist in his hospital, decided to give me a neurological exam himself. He found I had overactive reflexes in all of my limbs (hyperreflexia), which on its own, indicated I had to have a problem coming from the spinal cord in the cervical region, or the brain itself. He also found other anomalies.

It will likely not surprise you however, that in the first important medical paper looking into Chiari 1 Malformation by Dr. Milhorat (who went on to found the Chiari Institute in New York; the world's first centre specialising in Chiari) in 1999, studying 364 patients, they found that by the time they had their diagnosis confirmed, nearly 60% had been told by at least one Dr that their problems were of psychological origin.

When you mention that you had surgery 12 years ago, may I ask what that was?

I really have read your post with more than interest. I'm a long retired physio who had to research to find out what my family's problems were.....realising we had Ehlers-Danlos Syndrome was easy; finding out about Chiari 1 Malformation a lot harder. It seems to me you are very positive in wanting to find out more, so, to that end, I think you may find the following links helpful. Please see the video in this link about Tethered Cord Syndrome by Dr Iskander, altho he specialises in paediatric patients, he does mention adults (SBO & a split spinal cord, etc) : https://forum.scope.org.uk/discussion/73479/the-tethered-cord-syndrome-what-is-it-video

Please also have a look here at the American Syringomyelia & Chiari Alliance Project's (ASAP's) website; the one I've found the most informative: https://asap.org/

& at the ASAP's most recent videos of past conferences, tho there are earlier ones: https://asap.org/conferences/virtual-conference/2020-conference-videos/

Hoping your nerve conduction studies (been there too) either rule things in, or out.....after all if it's a peripheral nerve problem, then it can't be anything to do with your Central Nervous System, i.e. brain or spinal cord. Also hoping your MRIs may help.

Chiari 1 Malformation isn't easy, & can have a multitude of symptoms which can mimic other neurological disorders, but hoping you look into it more. My best wishes, & kindly let us all know how you get on.

Thanks again for those links.  I've just finished watching the YouTube video about Spina Bifida Occulta and Tethered Cord Syndrome.  Still working my way through the other links, but it's already mind-blowing stuff.  I've had to go away and come back to it a few times, because it's so much to take in all at one.

Danielle_2022 said:

Hiya again @LCB1012,
It is so nice to hear more of your story after connecting with you on another thread, though I am sorry that it’s been such a difficult time.

I have Cerebral Palsy and am a full-time wheelchair user, as I think you already know. With that said, although our experiences are wildly different, I do know what it’s like not to be able to trust your body. To want things that are beyond your physical capability, especially the apparently simple tasks of walking or standing unaided. You’re allowed to feel frustrated when these symptoms fluctuate, just remember: just because they fluctuate doesn’t make them any less real. Your experiences are valid and I see you, no matter what any medical professional says.

I hope that the upcoming tests bring you some answers because I know how powerful a diagnosis can be. The journey is not a linear one, but we’re here to support you, on both good days & bad. I’m glad that you have lots of other support with family and friends, too. 

I can’t wait to see some pictures of your cross stitch designs! 

Thanks, Danielle.

I think I needed to hear that.

chiarieds

Hi @LCB1012 - I'm pleased you've watched Dr Iskander's video. It is all a lot to take in at once. I know far more about Chiari 1 Malformation than I ever wanted to know, but I've been researching it off & on for just over 20 years. I thought that Ehlers-Danlos Syndrome must be associated with Chiari 1 Malformation at about the same time as Dr. B, a New York Chiari neurosugeon (he worked with Dr. Milhorat, whom I mentioned above), noticed some of his Chiari patients also had Ehlers-Danlos Syndrome I found when I got in touch, & he has helped me a lot. You'll see Dr. B gave a talk on Craniocervical Instability in the link to the 2020 virtual conference above. This video won't be relevant to yourself, as it's more about some of us with Ehlers-Danlos Syndrome. I was able to attend this conference as it was virtual, & it was quite something. It's good they post videos of the talks later too, as I do re-watch them.

I think you'll find that Chiari 11 Malformation is usually obvious at birth especially when associated with the commonest type of Spina Bifida, & say a myelomeningocele. Chiari 1 Malformation is often not discovered until years later.

I presumed it was a posterior fossa decompression that you'd had, so thank you for saying. Your current balance problems made me think about the cerebellum, which co-ordinates voluntary movements, & helps maintain posture & balance.

It sounds like you've already given your medical history, but i do know unfortunately that following decompression surgery some symptoms can occur. The other difficulty with Chiari 1 Malformation is that some dratted radiologist arbitrarily decided that it was defined only if the lower part of the cerebellum, the cerebellar tonsils, were at least 5mm below the level of the foramen magnum. Some people have symptoms with a lesser 'herniation,' & others can have a much greater herniation & have no symptoms at all. As Dr. Milhorat has said, 'there are ongoing controversies of the radiographic definition of Chiari 1 Malformation.'

Knowledge about Chiari 1 Malformation is changing all the time (according to USA specialists), they freely acknowledge that they knew more about it 10 years ago than 20 years ago, & know even more about it now. It just depends if your neurosurgeon is up to date.

Here are some of the symptoms of Chiari 1 Malformation (this was checked by Dr. B when I was asked to write about it a while ago, but may still be more up to date than what you might find online)

● Headache, suboccipital, i.e. at the back of the head, and may radiate behind the eyes, and into the neck and shoulders.
● Visual disturbances, e.g. double vision, decreased peripheral vision, loss of vision, photophobia.
● Otoneurological problems, e.g. dizziness and poor balance, tinnitus, feelings of pressure in the ears, decrease, or loss of hearing, hyperacusis.
● Lower cranial nerve, brainstem and cerebellar problems, e.g. dysphagia (difficulty swallowing), dysarthria (difficulty talking, slurring of words), hoarseness, sleep apnoea, nausea, tremors, palpitations, syncope/drop attack, ataxia, nystagmus, impaired gag reflex, lower cranial nerve paresis/ paralysis, e.g. vocal cord paralysis.
● Spinal cord problems, e.g. muscle weakness, impaired fine-motor function, pain (including sensation of burning pain), tingling or numbness of extremities, impaired position sense, spasticity, hyperreflexia, clonus, etc.

A diagnosis of Tethered Cord Syndrome (again checked by Dr. B ) is usually based on the following symptoms & 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)

Hoping some of this helps, but just to say, neurology being both fascinating & frustrating, that some of the symptoms above can be caused by other disorders. Just with your history, they're worthy of discussion.

LCB1012

My tethered cord was found at the same time as the chiari malformation and syringomyelia.   It extends to S1, according to the radiographer's report from last year (although it was diagnosed 12 years ago, I didn't see the need to request those reports).  Dad always said I walk like I have a rod up my behind.  

Spent much of yesterday walking like I was drunk.  Climbing the stairs was... Difficult.  At one point, both legs "locked" so that I couldn't move.  Problem is, if I sit down on the stairs, I don't know when I'll get back up.

Then overnight various limbs started twitching and jerking - first my right foot, then my right thumb and just after that, my left hand.  I have had restless leg syndrome off and on since my surgery, but my hands have never been affected, so this is new.

LCB1012

Got a copy of the correspondence letter between the spinal surgeon and the neurologists from the other hospital.

He told me he was sending me for a nerve conduction test, but said in the letter that he believes it is FND.

I feel likeI’m losing my mind.

chiarieds

Oh dear @LCB1012 - I fear it's more like your Drs are losing theirs!! When do you get your nerve conduction study?

LCB1012

https://forum.scope.org.uk/discussion/comment/491816#Comment_491816

Thank you @Teddybear12 for your kind words. :)

No appointment yet for the nerve conduction test, and I don’t know whether it’s to rule it in or out.

I have family who have been incredibly supportive throughout this. I’ve received a letter from the local Talking Therapies team, confirming I’m on their waiting list, but I’m not sure about speaking to my GP.

https://forum.scope.org.uk/discussion/comment/491817#Comment_491817

Thank you @chiarieds, for your kind words. :) I just don’t know which way is up at the moment, and I don’t know what to believe. I don’t know if it’s them or me getting in the way of treatment.

To make matters worse, in this latest letter, the neuro-turned-spinal surgeon even admits he hasn’t yet seen the MRI images or the blood test results taken last year!

Thank again to you both.

chiarieds

I despair @LCB1012 - I'd think you the last person to have FND; and sort of coming to a conclusion without seeing your MRIs! I'm wondering if they think you've had surgery for Chiari 1 Malformation, so that's definitely fixed, which unfortunately isn't always the case.....to say nothing of a split, tethered cord!!

About FND: https://fndhope.org/fnd-guide/

LCB1012

That’s just what I needed to read, @chiarieds , thank you. :)

And thanks for the link - I’ll read it in the morning. :)

LCB1012

Hi all.  Been a few months since I was last online, just thought I'd give you all an update.

In the last letter, the consultant neurosurgeon/orthopaedics surgeon said he didn't expect the nerve conduction study to find anything.

Well, I've had my nerve conduction study and I got the results last week.

All of the muscles in my lower limbs are weaker than they should be.  Neurosurgeon says the cause is unclear, but could be functional or neuro.  Suggests referral to a neurologist.  I spoke to my GP and started the ball rolling in that regard on Tuesday.  

Never mentioned the spina bifida, though.  Or the bulging discs.

Alex_Alumni

Thanks for the update @LCB1012 I hope you have been keeping well since you were last online.

How do you feel about this?

It sounds like getting the ball rolling on the study results is a positive at least

LCB1012

Alex_Scope said:

Thanks for the update @LCB1012 I hope you have been keeping well since you were last online.

How do you feel about this?

It sounds like getting the ball rolling on the study results is a positive at least

It's a shock that all of my leg muscles are affected, but I feel vindicated.  The doctor doing the nerve conduction study said "well, there's nothing drastically wrong with the nerves", so I expected the results to be clear.  Like I said, the neurosurgeon didn't expect the test to show anything, and I felt he was another one just humouring me.  

I've been OK, thank you.  The good days physically can still play with my mind, and the day before  I got the results, my step dad made a comment about how quick I managed to get up.  That set me off for the rest of the evening - is it psychological?  Am I making this up?

And then I got the results.  Hopefully that leads to a proper diagnosis. 

Thanks for asking.