NEW STUDY! Parasym Plus™ for Multiple Sclerosis › Forums › PrettyIll.com Discussion › EDS/MS/Chiari › MRI pictures of my head, Chiari and hydrocephalus?
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July 28, 2013 at 9:04 am #3965samuel94Participant
Hi Barara,
thanks for your reply!
Somehow it’s nice to hear I’m not alone suffering from this but on the other hand it’s really sad.
Yes, I wear a Philadelphia collar but not all of the time because it will make my muscles weaker.How did they test you for retroflexed odontoid? And isn’t there anything you can do like surgery?
Here in Germany doctors gave up on me or more precisely lack knowledge and aren’t interested in finding a solution for me.
I’ve heard health care is better in UK than Germany and you even have a clinic for hypermobility?For Vitamin D I already planned to get B12 checked and I can also ask my doc to check my D levels.
Samuel
July 28, 2013 at 11:02 am #3966Dr. DianaKeymasterOh, and it’s almost impossible for us to get enough magnesium!!! 😉
July 28, 2013 at 11:56 am #3968samuel94ParticipantYep, I already found this out some time ago und so I take about 600mg Magnesium daily.
July 28, 2013 at 12:03 pm #3969Dr. DianaKeymasterYep, I already found this out some time ago und so I take about 600mg Magnesium daily.
Awesome!
July 28, 2013 at 7:13 pm #3973BarbaraParticipantHi Samuel,
Regarding the Philadelphia collar, I have been wearing one continuously, all day and all night, for 6 years. You’ll be lucky if you find one that’s a perfect fit and, as a consequence I still use my neck muscles a little, throughout the daytime, within the constraints of the collar. I have to say that when it’s taken off, to change the linings (and wash the skin underneath) on a daily basis, I have no apparent weakness in my neck muscles and I can hold my head up (centred nicely above my shoulders) much better than I could in 2007, when I was first issued with a rigid collar and, what’s more, I can hold it up without any difficulty. It’s just a natural position for me now. Whereas following the accident, from 2002 until 2007, my head was ‘hung’ forwards.Bearing this in mind, you now have to consider whether you wish to risk further damage to your brainstem, caused by the unrestricted cranio-cervical instability. Do you see what I’m getting at ? So what if you’re neck muscles do weaken ? – you can always wear a brace, if that does turn out to be the case but once your brainstem is permanently damaged, it’s a totally different ball-game.
Are you absolutely sure that you’ve never had a head or neck injury ? Maybe something you’d forgotten about that might have happened whilst you were playing sport, maybe some years in the past ?
Who diagnosed your cranio-cervical instability ? and what was their suggested treatment ? Which part of Germany are you in, anywhere near Bad Wildungen ?
Regards
Barbara
(UK)July 28, 2013 at 7:58 pm #3974samuel94ParticipantHi Barbara,
Bad Wildungen isn’t as far away as I thought at first. It’s about 160km/99.42 miles away from me according to Google Maps. I live near Cologne. Why do you ask, is there any doctor who knows more about it?I got the diagnosis “Zervikalsyndrom” (“cervical syndrome”) from my orthopedist after I told him how loose it is and I that I often need to get vertebraes relocated by osteopath and it pops a lot and so on. He gave me a foam collar (didn’t help) and told me I should only wear it when driving in a car. A this time I already walked funny but I didn’t have a bad paralysis.
Some weeks later I couldn’t breathe (happened before) again and so my Mum drove me to ER where I wasn’t able to walk anmore and had to drive my in with a wheelchair. I had tachycardia and high blood pressure and fainted again. They gave me prednisone and as it didn’t helpon artificial respiration.
After I woke up again I couldn’t move any part of my body besides my head (I had this multiple times before) and my ability to move my arms came back later. But this time the ability to walk didn’t come back. My legs are shaky, if I try to put weight on them and I fall down.
But they weren’t able to find anything and told me it’s all in my head.But we didn’t agree and showed MRI pics to another radiologist who found Syringomyelia. So we send those pictures to one of the leading Syringomyelie experts in Germany and he diagnosed me with blocked CSF flow and Syringomyelia and that my cervical spine is missing it’s bending and looks like I had a whiplash.
And there’s nothing I can do, I have to accept it.
That’s everything that happened about my cervical spine till now, nobody looked at my odontoid or brainstem.
And I wasn’t able to find a doctor who wants to look any further.
Cool, isn’t it?I bought the Philadelphia collar on my own to see, if it helps me as the foam thing is crap. It’s better but I’m still not able to walk most of the days.
I don’t rememer having an accident to my cervical spine, maye it’s just EDS or the doctors pulling to hard on me in ER?Sorry for this long text. I hope you are able to understand everything as it may be a bit complicated.
And I would be lucky, of it only were my cervical spine. But it’s also my hands, shoulders, feet, jaw, eyes, ears, sinusses, stomach, bowel, lungs, kidneys, allergies and so on. And some of it still isn’t clarified and sometimes everything is just too overwheming for me.
But that’s a normal EDS life I guess. 😀Samuel
EDIT: As treatment for this I have physical therpy where they do isometric muscle training for my legs and arms.
July 29, 2013 at 7:58 pm #3975BarbaraParticipantI know of a very good man, a neurosurgeon in Germany, who helped me to find out what was wrong but I will not advertise his name over the internet without his permission, I’ll send you a private message of his details. He’s very interested in craniocervical instability and cranial dislocation and has written papers on it, he may know of someone closer to you who can help you.
I know what you mean about the foam cervical collars, they do not support the head really at all and therefore it’s allowed to slide backwards and forwards. The short time that I wore one actually made my symptoms worse.
Why and how couldn’t you breathe, was it just the loss of autonomic breathing response, was it swollen throat, throat closure or something else ?
When you have become paralysed before, was it always discovered upon waking – I have a theory for this. Were there any sensory changes or was it just muscular inability?
It’s funny that they said it was all in your head because quite frankly, I think it is all to do with your brainstem being compromised and, as we know, the brainstem lives in your head!
I know your legs are shaky but I think it’s best to still keep using them in any way you can. You might want to discuss this with the Syringomyelia guy. It would be dangerous to ask you to stand up but you can always find other ways of exercising them, as much as possible (it’s ‘use it or lose it’ I’m afraid).
My right leg started de-nerving way back in 2004, it hurt a lot, was weak and when I stood it felt like standing on broken glass, worse under the ‘instep’. I could manage to walk, in a fashion, on the outer edge of my foot, with the aid of a stick to help support and balance me but only for short distances, as the pain would soon come on. I bought one of those pedal machines you can use sitting on any seat and, even though I couldn’t pedal forwards, I strapped both feet into the pedals and pedalled backwards, which was much easier, the good leg provided the power and at the same time the bad leg got exercised! I also propped all of the doors open in my house and pushed myself in and out of the rooms backwards on an office chair (it’s very difficult to pull forwards but it’s easy to push backwards). I have full normal sensation back in my leg now and can use it virtually as normal (just a slight drag when I try and walk).
In the natural state of a healthy spine, the cervical spine has a lordotic curvature, a ‘C’ shaped curvature. Those with hypermobility type of EDS, or those who have had trauma lose this formation to some degree, it is referred to as ‘loss of lordosis’. For me, the Philadelphia collar helped restore this over time, through wearing it 24/7 as I have noticed on my radiology. I don’t have hypermobility though, only very slightly in my knees. For those with hypermobility, you need to be doing your best to help your body deal with better production of collagen, a process which requires regular Vitamin C throughout the day. I break up an effervescent Vitamin C tablet and dissolve this in water at each meal time, it helps aid digestion too, for those of us who have gut issues.
Hope some of this helps, or gives you hope, I understand you being overwhelmed. I find it easier to list the parts of my body NOT affected, it’s easy, my sinuses and my tongue (end of list!).
Hang on in there my friend, we have to fight this condition a little at a time, many little bits add up to one big bit!
Barbara
(UK)July 29, 2013 at 8:18 pm #3976BarbaraParticipantHi again Samuel,
I cannot see the syringomyelia in the shots you’ve published on this website, where did the expert say that you had it, I assume it’s lower down your spine, if it’s that that’s affecting your legs ?You also asked me about doctors in UK, they are probably the same as in Germany, I’ve not found one who’s at all knowledgable in this condition. There are certainly no surgeons I’ve found willing to take me on, either locally or in London, the only one eager to help was at The Chiari Institute in New York. Dr Milhorat there told me straight away, after all the tests and assessments, that I’d need fixation surgery.
The retroflex odontoid is mainly visible in the mid sagittal MRI shot usually (thats what would be seen if you were chopped in half, in a vertical cut from the top of your head passing down the middle of your nose, for those who didn’t know – sorry for the macabre description!).
Regards
Barbara
(UK)July 29, 2013 at 11:35 pm #3977samuel94ParticipantI like it how you still try to see it optimistically and concentrate on what parts are not affected of your body!
For me it’s my knees which is funny because most of the other EDSers I’ve met or heard about get horrible probs with their knees at first or very early, but not me. 😀
For me besides having congenetical hip dysplasia and bad feet it started with my fingers and still my hands are total crap and over the years my other joints like shoulders and ribs became more and more loose.I also mentioned RO but it didn’t interest anyone and somehow they are not used to look at the most top vertebrae rather than the lower ones.
My Syringomyelia is a long one which starts in my thoracic spine where there are also shadows in my nerve water (artifacts due to blocked CSF). That’s why you can’t see anything on the head MRIs.
And I have a mild scoliosis which can be a result from Syringomyelia but idk.Nope, I didn’t always get the paralises after sleep, sometimes but not always.
The two last ones happened during the day, one started after the swollen throat sensation, the other one with weakness in arms and legs.
My throat had a swollen feeling and my breath soundes weird but they didn’t see it swelling so it must be anything else.Well, for my stomach and gut it is more than just taking Vit C as my connective tissue is just hanging there. Result: delayed/nonfunctional peristalsis, reflux, gastritis and strange digestion, you get the idea.
I took C some time ago for some weeks but didn’t notice any improvement.Thank you so much for your help, I would be really lucky, if you could send me details about this Neurosurgeon in Bad Wildungen via PM.
Thanks!
SamuelJuly 30, 2013 at 11:13 pm #3984Dr. DianaKeymasterHi Samuel, A syrinx can often be reversed with Diamox (stop me, if you’ve already heard this!). Didn’t they discuss that with you? My kids and I take it as needed for the high intracranial pressure. One doctor mentioned he even reversed an 8mm Chiari with it! Wow! Gastroparesis and organ dysfunction is a HUGE problem with us. I *think* I know what is going on, and will be starting treatment trials here soon. So sorry you’re across the pond, or we’d enroll you right now! Hang in Samuel. We’re chipping away at this… 😉
July 31, 2013 at 9:08 pm #3997BarbaraParticipantNope, I didn’t always get the paralises after sleep, sometimes but not always.
The two last ones happened during the day, one started after the swollen throat sensation, the other one with weakness in arms and legs.
My throat had a swollen feeling and my breath soundes weird but they didn’t see it swelling so it must be anything else.
Thanks!
SamuelCurious you got the paralysis after the ‘throat swelling’ sensation because I think the throat swelling is prompted by having head down in flexion whilst looking left and right. I think this allows the odontoid to put presure on the brainstem, albeit subtly, or briefly. As all neural messages pass to and from the body via the brainstem, then I can understand how this can bring on paralysis. In fact I’m certain this is what was causing my night-time paralysis, as ‘normal service’ was resumed within a short while of getting my chin off my chest and my head back into the neutral position.
All the more reason to keep your head in that neutral position and keep moving your legs, so that your brain still knows you have legs and will try and repair damaged connections.
All the Best
Barbara
(UK)July 31, 2013 at 9:13 pm #3998BarbaraParticipantHi Samuel,
I’m not sure that your odontoid IS retroflexed, looking again at your MRI’s but whether or not, it can still come in contact with your brainstem if you have blatant craniocervical instability.
Barbara
(UK)July 31, 2013 at 9:34 pm #3999BarbaraParticipantWell, for my stomach and gut it is more than just taking Vit C as my connective tissue is just hanging there. Result: delayed/nonfunctional peristalsis, reflux, gastritis and strange digestion, you get the idea.
I took C some time ago for some weeks but didn’t notice any improvement.
Thanks!
SamuelHi again Samuel and all others suffering with gut issues,
I’ve said this before but I’ll say it again and again because it’s important. Many people have certain food intolerances, therefore end up with deficiencies in essential vitamins and minerals which are needed by our bodies to carry out day to day functions. Even in those of us without intolerances AND who get a well balanced diet, these deficiencies STILL exist. I know because this was proven in me. The poor digestion, slow gut motility at times, poor absorption, etc all contribute to these deficiencies. If you are too deficient your bodies (cells!) start breaking down. It is essential that we replete any vitamins and minerals that are deficient.Don’t expect to see miracles, some people are so deficient that it takes a long time for their body to repair, so it’s a long term strategy and not one that you can see results in a few weeks. In reality, our bodies are really struggling to cope and we must give them all the help we can. I have found that B vitamins help with gut issues, especially slow motility. Hope this puts it in perspective.
Regards
Barbara
(UK)
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Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy); Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium) deficiencies, CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies; Myalgic Encephalomyelitis (M.E.) . . . . and now Growth Hormone Deficiency (due to flattened Pituitary Gland)!August 1, 2013 at 4:55 am #4006samuel94ParticipantWell, I wish we had docs here in Germany is brilliant as you, Dr. Diana. But a lot of doctors (I have seen) are just like dumb sheep in comparision. No, they didn’t tell me about Diamox and after I asked they just said it won’t help, great.
I’m pretty sure I have a retroflexed odontoid but it changes from time to time like other joints in my body due to EDS. Also I often crack my neck and try to figure out what’s wrong. Once I succeeded to stop the swollen feeling as it started again by cracking my neck a lot. I know it’s NOT good but I’m trying to stop.
But also a lot of osteopaths worked on m cervical spine which helped but wasn’t a long term fix.
And all MRI’s were taken when me symptoms weren’t that bad with double vision, confusion and difficult breathing and so on.
And I can see that the odontoid changes in MRI’s as in one MRI it looks pretty normal.
I’m going to post pictures again so you can see it.Samuel
August 1, 2013 at 6:13 am #4007samuel94ParticipantLying position:
Upright:
Note: I still had to lean my head against something, it was in sitting position and they didn’t change position. -
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