Scheuermann's kyphosis surgery.

Dan M

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Hi all.

The curve in my spine makes my M.E. symptoms a whole lot worse than they otherwise would be. However after recently reading accounts about CCI/AAI I wonder if my spine is not just an exacerbator of my symptoms but an actual cause.

Just wondered has anyone had corrective surgery for kyphosis and has this helped their symptoms at all?

However I have another barrier to surgery in that I seem to react to all medication pretty much except low-dose painkillers so I'm not sure how I'd ever achieve this. Does anyone know who you approach first before surgery to address the allergy issues. Would you speak to an immunologist? An anaesthetist?

Cheers for any ideas.
 

Moof

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We have Scheuermann's in our family. I'm affected myself, but fairly mildly – it only causes pain in my shoulders and neck, which is manageable with a massager.

A relative with more pronounced kyphosis and severe asthma began to struggle with her breathing, so she underwent an operation. It was very challenging for her, involving fusion of some vertebrae and the insertion of one or more rods, and the recovery period ran to about a year. The first four months were particularly difficult and painful, and it was a long time before she could sleep properly.

Having seen the process in someone who was fit and well, I'd say it could be hard going for an ME patient. You'd probably have to be assessed and talk to a surgeon about what specific procedures you'd need, though, before you could make a really informed decision – it would depend on the degree of kyphosis, your age, what physical shape you're in, etc . I'm guessing the NHS will probably only treat it surgically if it's causing major problems.
 

Dan M

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Hi Moof.

Yes I talked to a surgeon back in 2004 who said he could make me straight although I may have been tool ill but at the time I wasnt interested so never discussed it in depth. I might have to get back to Stanmore I guess and see what the thinking is now.
 

pattismith

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@Dan M

cervical stenosis and CCI can be associated to dysautonomia symptoms, but I don't know if your thoracic spine condition have symptoms in common with ME.

Are you hypermobile? Do you have dysautonomia?
 

Dan M

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@Dan M

cervical stenosis and CCI can be associated to dysautonomia symptoms, but I don't know if your thoracic spine condition have symptoms in common with ME.

Are you hypermobile? Do you have dysautonomia?
Hi Patti.

As far as I'm aware so far kyphosis symptoms don't overlap with ME but I'm a bit out of date so thought I'd look into things again and ask here first.

I'm a bit hypermobile but nothing that needs treatment. Beighton score is 4/9 with flexibility at my little fingers and knees. The Steinberg’s, Walker’s and Gorlin’s signs are negative. I don't have any dysautonomia symptoms.
 

pattismith

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if you have muscle problems, I would rule out any myotonia. Myotonic Dystrophy is a neuromuscular + multisystem genetic disease which involves sensitivity/intolerance to many drugs.
I have myself a kind of myotonia and I'm very sensitive to opioids and many other drugs.
(neuromuscular problems can produce scoliosis, but i don't know for Sheuermanns...)
 

Dan M

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if you have muscle problems, I would rule out any myotonia. Myotonic Dystrophy is a neuromuscular + multisystem genetic disease which involves sensitivity/intolerance to many drugs.
I have myself a kind of myotonia and I'm very sensitive to opioids and many other drugs.
(neuromuscular problems can produce scoliosis, but i don't know for Sheuermanns...)
That's interesting thankyou.

I've not heard of myotonia, I do have the multiple sensitivity issue but not the muscle weakness and delayed muscle relaxation, loss of muscle or prolonged involuntary muscle contraction so much as it's more of the pain with repetitive use I suffer from.
 

pattismith

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That's interesting thankyou.

I've not heard of myotonia, I do have the multiple sensitivity issue but not the muscle weakness and delayed muscle relaxation, loss of muscle or prolonged involuntary muscle contraction so much as it's more of the pain with repetitive use I suffer from.
The prolonged muscle contraction may not be noticed, especially in DM2, where the hand grip is normal.
My own myotonia is DM2 like, even if I am not yet diagnosed.
My symptoms are neuropathic pains, fatigue, dizziness, brain fog, tinnitus, mood swing, headaches, nausea, stress intolerance, exercice intolerance, muscle pains days after exercice, intolerance/sensitivity to drugs….
I discovered my myotonia 3 weeks ago when I performed the muscle percussion test, which is particularly obvious at the trapezius in DM2.
It's an easy test that you can do yourself, here some advises to do it:

https://forums.phoenixrising.me/thr...myotonic-dystrophy-type-2.77928/#post-2237454

(and idem the weakness can stay unnoticed until you are old, or until you take a drug with some effects at the neuromuscular junction. I noticed mine when I took macrolides antibiotics at 49 old only)
 

Dan M

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The prolonged muscle contraction may not be noticed, especially in DM2, where the hand grip is normal.
My own myotonia is DM2 like, even if I am not yet diagnosed.
My symptoms are neuropathic pains, fatigue, dizziness, brain fog, tinnitus, mood swing, headaches, nausea, stress intolerance, exercice intolerance, muscle pains days after exercice, intolerance/sensitivity to drugs….
I discovered my myotonia 3 weeks ago when I performed the muscle percussion test, which is particularly obvious at the trapezius in DM2.
It's an easy test that you can do yourself, here some advises to do it:

https://forums.phoenixrising.me/thr...myotonic-dystrophy-type-2.77928/#post-2237454

(and idem the weakness can stay unnoticed until you are old, or until you take a drug with some effects at the neuromuscular junction. I noticed mine when I took macrolides antibiotics at 49 old only)
Thanks Patti.

I cant find the details on how to perform the test, am I missing it somewhere?
 

pattismith

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Thanks Patti.

I cant find the details on how to perform the test, am I missing it somewhere?
This is the test I performed that convinced me I have a kind of myotonia:

Some reflex test can be performed to screen for this disease, and DM2 is corelated to delayed relaxation of the trapezius (delayed relaxation after trapezius percussion)

It can be seen in this video:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3721102/bin/supp_80_24_e251__index.html