My wife has managed her Parkinson’s reasonably well for the last 10years but over the last year has developed a serious crumbling spine. MRI confirmed. I am struggling to find a consultant with knowledge of these joint conditions. Has anyone had similar experience of this problem and/or can anyone suggest a suitable consultant?
Hi, and welcome to our forum. You’ll find everyone here very friendly and supportive, and I know they’ll be along soon to let you know what they think about your wife’s situation. Our website has a wealth of helpful information for carers and people with Parkinson’s. You may find this a good place to start. We also have a free and confidential helpline staffed with friendly and highly knowledgeable advisers who can help you find assistance in your area and are happy to listen when you need an ear. We strongly advise calling; they are lovely and always happy to help. You can reach them at 0808 800 0303.
Please accept our best wishes and the warmest welcome,
Jem
Forum Moderation Team
Good evening Carol … I am 70 years & was diagnosed with both Atypical Parkinson’s disease & neuropathy last year. I have also had an Mri scan on my spine showing three areas of damage due to old age, so sort of wear & tear I guess, I have terrible pain at times in my spine managed by medication. One area of pain is between my shoulder blades, it feel as though a knife has been plunged into my back. With medication the pain quickly goes, but clearly there is something wrong that is causing this problem. I have had it for around 5 years.
I am certain that the damage to my spine is causing my Parkinson’s & neuropathy symptoms to worsen. So much so that I struggle to walk or move about my flat.
So, through my Benenden Health insurance I am going to see a consultant at the Nuffield Hospital in Tunbridge Wells on Wednesday.
I will be asking his opinion on what is causing the mobility problems I have & what can be done about it.
When you have Parkinson’s as I do my GPs tend to put down my mobility problems to this & are not interested in investigating further. I think the starting point of my problems is the damage to my spine.
You haven’t told us a lot about your wife. How old is she? How did she come to have the Mri scan? Has she not been referred to an expert in the field? Has an expert had a look at the Mri scan? Is the spine damage connected in any way to her Parkinson’s?
Plan A would be to speak to her GP about a referral to a consultant in the field.
Plan B would be to phone your local Nuffield / Bupa hospital & pay to see a consultant.
You also don’t say where abouts you live so difficult to recommend anyone as you might be hundreds of miles away from where they are based.
Any questions do ask.
Best wishes
Steve2
Thanks for your kind reply. I cannot deal with this today but will give more details tomorrow. Alan W
Hi Steve. Carol is 78 and lives in Diss, Norfolk. Carol has had progressive Parkinson’s for over 10 years now. The decease has progressed slowly and has been well managed by the NHS. She also has had back pain for about a year. Over the last month, the back pain has got steadily worse and right now has become intolerable. Pain killers seem to have little effect.
The MRI scan was back in October 2024 due to the back pain and determined that Carol has severe crumbling of the spine and hip. Her doctor referred her to a consultant who turned out to be a physiotherapist (waste of time). This consultant referred her to an orthopaedic consultant who specialised in hip surgery. (waste of time). This consultant stated that only specialist hospitals would consider spine surgery for someone with Parkinson’s and he has referred her to another consultant. I have looked at this consultant’s profile and am not sure he is going to be of much help either. This appointment is for next month.
Our GP will not consider further referrals until she has had the reports back from all the consultants.
We have no medical insurance
I am considering going private, but not sure I can afford a spine operation. I am willing to pay for an appropriate consultation to see what recommendations and options that are on offer.
I was hoping that someone at the forum would know such a consultant. The only one that I have found is in Harley Street.
1 Like
Hi dw, when you say serious crumbling spine, and hip, do you mean a diagnosis of severe osteoporosis? I ask because there is a whole load of help and advice regarding this from the Royal osteoporosis society. Much like Parkinsons uk, they have a very good helpline you can ring, with knowledgeable nurses who might be able to signpost you to people who could help. My husband has Parkinsons and low bone density, he has many aches and pains, low back, back nothing like your wives symptoms. I on the other hand have 7 compression fractures on my spine diagnosed. So i know a lot about pain! I can imagine how this is affecting your wife, almost certainly exacerbating her pd symotoms. Surgical intervention comes with many risks if even deemed appropriate. Has she been referred to a pain clinic? There is a lot of help out there, but its not going to be an easy fix if its age related osteoporosis, and of course having pd puts her at risk of bone deterioration. For me, diet advice, pain relief advice, and lots of online research has helped. I hope she feels more comfortable soon, pain is debilitating, and support is so important.
Good afternoon & thank you for your detailed reply. On the pain relief side I now use Amitriptyline which I find very good indeed. I have used a combo of BOTH Paracetamol & Ibuprofen [not NHS approved for those over 70] but available over the counter.
The private option would be to get a private consultation with a consultant you like in the field & ask if your wife could be treated by him on the NHS.
The Neurologist I am seeing on Wednesday privately does treat NHS patients.
With you wife being 78 it would be a good idea to get things started as getting an operation once you are in the 80’s can be difficult / more dangerous.
Good post from Jandc I thought.
Do let us know how you get on.
Best wishes
Steve2
1 Like
Many thanks for your comments. It’s always helpful finding out what other people’s experiences.
Hi Carol very warm welcome. from what I read you live near the east coast, and the hospital near you is Pilgrim next Lincoln the Hull. My brother lives just outside Lincoln in Welton and he was diagnosed with PD about 4 years ago. I live Nottingham way and i found out I had PD in 2010. but also I am same age as you. I was amazed when my brother told me that he did not have a PD nurse, here at Nottm QMC we have 4, if he wants to find out anything he has to see his consultant. Reason I am ratting on is the difference in areas. The other year I hadv to go and see the Spinal surgery service my consultant was E A Najjar, He had me in QMC a week later, what i had was Myelopathy associated with loss of function in hands, it was top of my spine cervical stenosis C3-C6 he had to put scaffolding (For want of a better word) afterwards there is a register of spinal top doctors which is on the web where they ask for feed back on your surgery, If you look on the web at spinal doctors you can read about them,. QMC (Queens Medical Centre) Nottm has a very good spinal team of nurse /doctors/surgens/ office staff. Take a look if you would like to know more just send message.
Many thanks for the information. I have a number of avenues to explore at the moment with the help of family. Thanks again.
You’r Welcome I hope you are able to get an answer. Stay safe please post and let the forum know how you get on.
Hi good evening. My name is John my mum has got Parkinson’s Disease spondylosis of the spine basically the spine is crushing in on itself. My mum’s had Parkinson’s Disease 33 years spondylosis she’s had for approximately 30 years, she’s now 77 lives in Norwich. Years ago we used to go to the Norfolk and Norwich hospital to receive help. The help she received from the consultant was not great the back problem they dismissed, didn’t offer no help at all. So I did some investigation I found the world’s leading people for Parkinson’s and spondylosis her life has been changed around. Sadly this is not in Norfolk, we go to London. That takes three hours from my mum’s house to the Center of London but it’s worth the journey. My best advice to you do not give up hope 18 years ago my mum could not make it to the toilet could not literally do nothing. When we went down to London they turned my mum around different drugs different ideas and it have worked well the. Sadly these days age is against my mum. I accept this my mum 77 and she’s had a Parkinson’s for a lot of years with numerous other health problems. If you would like any advice places to go in London for spondylosis or Parkinson’s. I genuinely wish you the very best in life. John.
I John I also have had PD for a lot of years and also my 3-6 bones top of my spine had spondylosis. This year i turned (should i teli a strange man my age?)78and in 2023 had spinal surgery, I thinks its called infusion I have surport in my neck, BUT IT WORKED?? I live in Nottingham and went to QMC all the spinal staff from surgens nurse’s helpers, were excellent and you gets lots of help , if you look at my back post’s I think that i have written about this before. if you would like to know moore just contact me via forum,
I have just read all above post but please all of you take a look at E A NAJJAR’s spinal department at QMC Queens Medical Centre I can not praise them enough,