My name is Dalia and I am 28 years old.
Can you please recommend doctors specialised in chiari , and also a center where to do a brain scan? I am based in Yorkshire but would travel to see a good doctor.
I have been diagnosed in italy with Chiari I, fours years ago but no one couldn’t help me. I have been told that there us nothing to do and also it is not sure that my pain us related to chiari.
I have six protrusions on my neck , they cause me so much pain and I am also a musician and a singer, so this makes my work more difficult.
A Surgeon told me I cannot do any operation or at least he wouldn’t have done it because it us too dangerous to do surgery on the neck .
I have pain all over my body, my right hand shoulder is so inflamed and my gp cannot help.
I have also a pelvis rotation and spondylitis .
Sometimes I lose my balance and I forget about names of places and persons, but I don’t suffer often of headaches.
I think that the pain can be related to chiari.
My name is Merl and I’m a member of the Moderator Support Team. I am also a neuro patient.
I am in Australia, so I’m unsure regarding ‘Recommended Dr’s’. I can certainly provide you with the contact details for neurosurgeons in your area but I have no idea of good dr’s nor bad dr’s. Also the systems and how those systems work regarding referrals and scans can vary rather a lot from country to country, so although I can easily direct you via the Australian health system, the UK system is a little different. Now, in saying all of this, reportedly, Leeds has one of the best teaching hospitals and does have specialist neurosurgeons, so obtaining a local referral should be less difficult. Here’s a link that ‘may’ help.
I would however recommend obtaining at least 2 other opinions from qualified neurosurgeons and not just a neurologists opinion. The neurologist works on brain theory, the surgeon is the person who operates on the brain itself. Sometimes if you only obtain 2 opinions and they both differ from each other, it can leave us even more confused. By having 3 opinions at least 2 of them might agree on a treatment regime, if treatment is required.
I would also recommend obtaining the your scans prior to making the neuro appointment if at all possible. If you attend without the images they are only going to send you away to get the scans, then make another appointment and that could be months of waiting, so try to do it before the appointment.
Again, depending on the referral process, a general dr should be able to order scans and if not, they should at the very least refer you to someone who can order the images…
There are a few differing types of scans and depending on the Dr can depend on which scan they prefer. An MRI, both with and without contrast, can provide the best or clearest image, but then some dr’s prefer a CT again both with and without contrast. The contrast can assist in clearly defining surrounding structures with either scan.
I do hope it helps and please do keep us informed of your progress. Your information may just help someone else on their journey.
Merl from the Modsupport Team
Hi Merl , thank you very much for your reply.
I am so glad I am receiving support!
I can definitely try to see a neurologist and neurosurgeon in leeds, I am trying to convince my Gp to give me the referral. I have a brain scan , which I have done in Italy 4 years ago, and been told from a Physiotherapist, who spoke with a neurosurgeon in Milan, that I have Chiari 1. I can see myself on the images of the scan that there is no space at all from the spinal cord and the celleberum. There are many other Images on this dvd , which i cannot understand.
I am not sure if it is MRI or CT. In italy we called " Risonanza magnetica"
I think is very important to monitor the situation , as I am only 28 and I already have all these problems, it is not normal so why don’t investigate on this?
I will let you know when the gp gets back to me.
Thank you again for your help!
Hi, I have looked online and I am pretty sure my scan is a MRI - I can see it is on 2D on my pc.
It’s great that you have images/scans already BUT at 4 years old, they’ll want/need something much more recent. Those images you have will be a very good reference point for the medicos to be able to compare before vs now.
You state that a physiotherapist spoke to a neuro, this is often where things can get a little messy.
Some specialist can be VERY protective of their specialisation, so other’s giving a pseudo diagnosis or a diagnosis outside of their own specialisation is very much frowned upon. Some neuro’s are of the opinion that if the tonsil is less than ‘X’ length then they will NOT be symptomatic. Some medicos use this theory as a rule rather than a guide. Some patients can have a longer tonsil and yet minimal symptoms but by the same accord, some patients can have a much smaller tonsil but have no end of issues. Due to this each person needs to be assessed individually and not solely by images.
“…it is not normal so why don’t investigate on this?” There are a few theories on this, a couple of which I have been burnt by personally. The first is that you’ve had a diagnosis from a neuro. Neuro’s are specialists and if you’ve had a diagnosis by one specialist sometimes another specialist will NOT contradict a former diagnosis. Also the specialist neuro community is VERY small and any contradiction will reverberate throughout the community really quick. For example, I was told by one neuro to ‘Wait and Watch’, I was not happy with this and got a 2nd opinion. That 2nd opinion was ‘Operate’, so I took the 2nd opinion. Whilst in hospital the first neuro I saw approached me asking why I was there? So I told him. He was not happy and although I wasn’t part of the next discussion between him and the surgeon who did operate, it was obvious a discussion had taken place as the surgeon quizzed me about my interactions with that neuro.
The next theory (which really annoys me) is ‘I’m the dr, so I know. You? You’re just the patient, you wouldn’t know…" What I know is the symptoms I’m having, but then to get told ‘Ohh well, that just can’t be happening…’ but it was. If you are symptomatic DO NOT let them discredit or minimise your symptoms. Post surgery I had a nurse tell me ‘Ohh it can’t be THAT bad…’ I told her ’ you lay on the floor and I’ll boot you in the side of the head…then you can tell me…’ She was offended by my response, but nowhere near as offended as I was by her statement.
Another theory is ‘We operated, we fixed…’, my view was if this is ‘Fixed’ I can think of another ‘F’ word that better describes it all, but because it was ‘all fixed’ they were less than reluctant to reinvestigate. I was labelled everything from a drug seeker to a hypochondriac, then they investigated and then they, eventually, decided they needed to perform another neurosurgery. If they’d listened to the patient (Me) in the first place it all could have been managed much better IMHO.
Some people are lucky enough not to have any of these issues, for some the whole process runs smoothly. They have surgery, everything heals and life goes back to normal BUT this is not always the case, even if the medicos try to convince you otherwise. I hope, pray, beg… that you are lucky enough to avoid all of this, but just know if you’re sent down these paths, you will not be the first.
Merl from the Modsupport Team