Anyone know a really fabulous, expert spinal surgeon?

[RogueFemale]

Asking on behalf of a friend.

My friend has Ehlers-Danlos syndrome. One symptom is chronic pain. The main cause is spinal problems.

Because of EDS these are multiple: scoliosis, degenerative disc disease, and joint hypermobility.

She’s had multiple MRI scans. She is 40 years old.

But, so far, there is no single surgeon to treat her spine as a whole thing. E.g. one says he will deal with the scoliosis in her upper back, but not address the disappeared discs below. Yet the whole spine is interconnected. She’s waiting to hear who is next to give the verdict on the NHS, but we don’t know who it is.

She doesn't feel 'listened to'. E.g. [male] consultants say 'it's just scoliosis'.

She describes it as "like having a car that's 40% Jaguar, 40% Ferrari & 20% Volvo, and you keep taking it to different garages”.

She has some money saved to go see a private consultant who might really know what to do, and is looking for that person.

Alwyn Jones is worth checking out.

What area of the country are you in?

London/ South East but friend willing to travel for the right consultant.

Look up Mr Sean Molloy. He operated on my son who had severe scoliosis.

I’d suggest your friend looks at John Crawford (based at Addenbrookes in Cambridge but works privately too)

RNOH Stanmore is the absolute best place to be when it comes to spinal surgery. We travelled over from Ireland so that DD could have her scoliosis surgery there!

Alex Gibson was her consultant, absolutely fantastic surgeon and lovely man - very knowledgeable when it comes to treating patients with EDS and really engages with any and all questions or concerns. Sean Molloy as PP said is also very good

Yes, my son had his surgery at RNOH Stanmore.

I have similar issues (although not as serious, not a severe) but I don't feel listened to, I don't feel anyone is taking it all into account and I'm in terrible pain and have been for a year.

Sean Molloy, Royal National Orthopaedic Hospital.

Surprised your friend hasn’t already been referred there, but she may have to push. It’s a tertiary hospital, for the orthopaedic stuff that’s too complicated for general hospitals.

I saw him privately for diagnosis (my work heath insurance covered two visits).

She can specify she would like a referral to RNOH as they have the expertise in treating her condition.

You can get an NHS referral I believe but I’m not sure what the waiting time might be.

My husband had back surgery by the neurosurgeon Rodney Laing. We’re in the SE. Wouldn’t hesitate to recommend.

Sean Molloy, Alex Gibson and Shaun Ridgeway

Mike Grevitt in Nottingham. He’s one of the best spinal surgeons in the country, and is world renowned.

I don’t know why that link says oral surgery, he definitely doesn't do that,

https://www.stephenmorrisspine.com/

outstanding!

Thanks so much for all the replies!!

Hi
May I hop on board here? My daughter (in her mid twenties) may be in line for surgery - pain. and increasing S curve with a rotation.
We may be self referring to Alex Gibson, or returning to Stewart Tucker.
But in the meantime does anyone have any recommendations for a physio in London? Preferably not DebsTurnbull, who tho I know is brilliant, DD had a tricky time with due to bracing (long and painful story!) x

I'm thinking of trying to book a surgeon privately.

My daughter had a severe scoliosis, she was referred by our GP and was treated at St George's in 2022.

Mr Bernard and Mr Bishop operated on her and did a fantastic job. She went from around a 98° curve to being poker straight. She had costoplasty too in the op. This has made her recovery slower and she still gets occasional rib pain, her spine doesnt trouble her at all now.

I would definitely recommend them and the whole team at St George's.

Any experiences of Stewart Tucker in London?

hopeful bump. DD is seeing him for a scan in a few weeks.

Bump.
DD saw Mr Tucker, and 9 years after her first x Ray he's saying yup, the curve has increased and we ought to operate. She's 26 and he says it can happen any time in the next couple of years.
Gutted. But at least we have clarity.
Anyone else used Mr Tucker? DD likes him, and I warmed to him this time

Rod Laing has a fantastic reputation in Cambridge. ( Addenbrookes Hospital and he also has a private practice in London I believe). He may be able to suggest someone if he’s not the right person.