Have you ruled out Chiari or Craniocervical Instability (CCI) as a cause of your CFS

[rainbowbluebells]

Hi, please can someone help? I live in the U.K. i explained my situation to Dr Bolognese and he sent me this:
“Try cervical traction; if you obtain dramatically positive results, then proceed with a supine MRI Cervical, without contrast.
Then follow the instructions below:

you can come here for a visit or have a videoconference

go to:
http://www.chiarinsc.com/newpatients.php
and
http://www.chiarinsc.com/telemedicine.php

fill all the paperwork
follow the instructions
mail in the CD's
then get in touch with Ms Pendergast for an appointment at ipendergast@nspc.com


If the traction does not provide dramatically positive results, then proceeding with the next steps is not indicated.”

So, how do I do cervical traction in the UK? I am not under any consultant neurosurgeon or anyone really except a cardiologist! I have severe M.E and am very worried about trying anything that may potentially make me worse. I’m not sure if I have CCI, chiari, cranial settling, intracranial hypertension. Hope others can help, and @jeff_w hope you don’t mind me tagging.

Please could others recommend cervical traction devices? I’m worried about buying one Incase i buy the wrong one. And how would I use it??

 

[Remi]

If a manual therapist can come to your home, they could do manual traction. Otherwise, Jeff tried the Philadelphia collar and one other. I posted the neck saviour above, avl in the UK, which would seem gentle. But waiting to hear about experiences with it.

 

[rainbowbluebells]

Thanks for the advice. To be honest, Im thinking of waiting a few weeks - I may be able to sit up more by then (due to starting PoTS meds), and if so I’ll go and have the upright MRI. Im very worried about just putting a collar on at home, without supervision, I seem to remember Jeff had some symptoms with one of the collars when it came off. And if anything happened here, there’s nowhere to get help, NHS hospitals are terrible for M.E, and my mums very unwell too so I can’t really take the chance of anything happening. and if In a few weeks I can’t sit upright, I’ll just do a supine MRI and send it in.

 

[brenda]

Thanks for the advice. To be honest, Im thinking of waiting a few weeks - I may be able to sit up more by then (due to starting PoTS meds), and if so I’ll go and have the upright MRI. Im very worried about just putting a collar on at home, without supervision, I seem to remember Jeff had some symptoms with one of the collars when it came off. And if anything happened here, there’s nowhere to get help, NHS hospitals are terrible for M.E, and my mums very unwell too so I can’t really take the chance of anything happening. and if In a few weeks I can’t sit upright, I’ll just do a supine MRI and send it in.

I think you would be better getting a PT to come to you rather than just go ahead with the scan.

 

[rainbowbluebells]

I think you would be better getting a PT to come to you rather than just go ahead with the scan.

Hi, by PT, do you mean physiotherapist? My main worry is that my problem may not just be CCI. And if I do some kind of manipulation without knowing exactly what’s going on, I may damage something or end up with some problems. I’ve basically had a lot of autonomic symptoms from birth including severe tachycardia, hyperhidrosis, urinary and bowel issues, heat intolerance and many other things, making me worried I may have chiari or some other genetic issue going on as well.

 

[brenda]

Hi, by PT, do you mean physiotherapist? My main worry is that my problem may not just be CCI. And if I do some kind of manipulation without knowing exactly what’s going on, I may damage something or end up with some problems. I’ve basically had a lot of autonomic symptoms from birth including severe tachycardia, hyperhidrosis, urinary and bowel issues, heat intolerance and many other things, making me worried I may have chiari or some other generic issue going on as well.

Okay, l am in the same situation though not bedbound like you, looking for answers.

 

[Remi]

Thanks for the advice. To be honest, Im thinking of waiting a few weeks - I may be able to sit up more by then (due to starting PoTS meds), and if so I’ll go and have the upright MRI. Im very worried about just putting a collar on at home, without supervision, I seem to remember Jeff had some symptoms with one of the collars when it came off. And if anything happened here, there’s nowhere to get help, NHS hospitals are terrible for M.E, and my mums very unwell too so I can’t really take the chance of anything happening. and if In a few weeks I can’t sit upright, I’ll just do a supine MRI and send it in.

The collar has to fit right. Before reading about CCI etc I ordered soft collars to try and none of them fit. The neck saviour can be manipulated while you are lying on it and won't pull too hard on the neck, it seems. If I had the money I'd do the MRI and be done with it. No energy spent on finding a good manual therapist who understands my hypersensitive body. Or getting referrals from GP for neurologist when both not knowledgeable or understanding.

Would you send the scan to Bolognese for evaluation and go there for surgery is applicable? Is it cheaper than Gilete? Did B. specfify traction under supervision or DIY with collar?

 

[bombsh3ll]

Hi I am still in a quandry about this myself and recently decided to get my upright imaging reviewed again with Dr Bolognese.

Is he now asking for supine MRIs though or is that just for patients unable to sit up for long enough?

I got uprights done in all positions last year and then had a consult with Dr Gilete who thought I may have cranial settling but was a bit ambiguous and I was put off by the fact that he started off talking about the images on the screen pointing things out for the first half of the consult then realized they were for the previous patient & got mine up.

Dr Gilete offered me a trial of a halo brace (like Jeff had) & I was very excited about this to see if it made a difference before committing to C0-2 surgery. However, the halo brace would cost about 8k which is a significant dent into what the surgery would cost, and worse I would only be able to have the halo brace on in the hospital for 48 hours, not come home with it as I had assumed. Apparently they are very expensive and not single use. I am not sure 48 hours would be enough due to my debilitated state, and also if pulling my head up helped things, it may become worse on removing the brace (like when Jeff removed his hard collar.

Obviously if the brace worked I would then need time to raise the money for the surgery itself. The scan reports from the UK MRI centres didn't seem to signify anything majorly abnormal other than a mild upper cervical scoliosis & mild hindbrain herniation (nowhere near a chiari) & wasn't even mentioned on the other upright scan.

I am interested in trying a philadelphia collar but am not sure how to size this. If anyone has any thoughts I would be most grateful.

B xxx

 

[bombsh3ll]

Would you send the scan to Bolognese for evaluation and go there for surgery is applicable? Is it cheaper than Gilete?

I think the surgery would be much cheaper with Dr Gilete; 60k-80k euros for C0-2 fusion. But I remain unconvinced it would benefit me, whether I truly have CCI or not as he was a bit ambiguous, so I am trying to get my scans reviewed by Dr Bolognese and if he thinks I am a candidate I would then pursue the surgery with Dr Gilete.

B xxx

 

[bombsh3ll]

In the halo, I no longer have POTS. I no longer have PEM. My ME/CFS might have been, all along, a neurosurgical/structural problem.

Jeff, if you're still reading this, how long did you have the halo on before you noticed a difference?

I have been offered a trial of one for 48 hours & am concerned it may not be long enough. It is also over 8000 euros. I joked that probably includes 1k to fit it and 7k for the security guards to stop me doing a runner with it on if it improves my POTS to the point I can stand up.

 

[Remi]

You could have a Philadelphia collar custom sized - will be expensive, but you'd know for sure if it was effective or not, without making things worse.

 

[jeff_w]

Hi @bombsh3ll,

Jeff, if you're still reading this, how long did you have the halo on before you noticed a difference?

It took a while for me to get the right amount of traction from the halo. But once the halo was providing enough traction, the difference was immediate.

So if your issue is CCI, you will need a certain amount of traction to sufficiently free your brainstem from compression/distortion. The amount of traction needed varies from person to person, but I've seen most people need between 20-35 lbs.

Hopefully, the professionals doing your 48 hour halo test will provide the right amount of traction. The hospital that put me in the halo didn't give enough traction. They provided only enough traction to get rid of my dizziness, which enabled me to sit up and be discharged. But their level of traction wasn't enough to touch my POTS or PEM.

It was when I lifted the halo vest myself, at home, that I felt much better. So I found a local orthotist to adjust the halo to provide more traction, and that's when the improvement became clear and constant. But I had 4 months in the halo to figure this out, not just 48 hours.

If you find that the halo isn't giving sufficient relief, you can experiment yourself by pushing up on the vest. (Note: I'm not officially recommending this specific form of self-experimentation. It is what worked for me, and it was necessary for me.) You can also try asking the MDs to give more lift.

I have been offered a trial of one for 48 hours & am concerned it may not be long enough. It is also over 8000 euros. I joked that probably includes 1k to fit it and 7k for the security guards to stop me doing a runner with it on if it improves my POTS to the point I can stand up.

Ha! Hope so!

 

[rainbowbluebells]

The collar has to fit right. Before reading about CCI etc I ordered soft collars to try and none of them fit. The neck saviour can be manipulated while you are lying on it and won't pull too hard on the neck, it seems. If I had the money I'd do the MRI and be done with it. No energy spent on finding a good manual therapist who understands my hypersensitive body. Or getting referrals from GP for neurologist when both not knowledgeable or understanding.

Would you send the scan to Bolognese for evaluation and go there for surgery is applicable? Is it cheaper than Gilete? Did B. specfify traction under supervision or DIY with collar?

Hi, I’m sorry for my late reply, I hadn’t been too well.

So I actually contacted both Dr Bolognese and Dr Gilete. I wanted to know what their differences in imaging preferences were and wanted to get different opinions on my condition, as so far obviously under the nhs things have been terrible.

It would be easier to see Dr Gilete I think, as it will be much closer to travel and also I think the cost must be a lot cheaper, being in europe rather than America? Although honestly I don’t know as I haven’t asked about surgery prices at all yet.

In terms of traction, Dr B didn’t say anything else other than what I posted above! Just said “try cervical traction”! And for the reasons I mentioned, I’m not keen at all to do that without any kind of direct supervision due to how bad my health is. I would much rather just do MRIs and I do have money to do that at the moment.

I’ve clarified again with Dr Gilete and he says upright MRI is best. But if I can’t do that, then to do supine mri with flexion and extension (3T is best) as well as a CT scan in rotation, which *may* diagnose it. It’s all very stressful isn’t it

 

[Remi]

Never apologise for delay in response, this disease makes life go a lot slower! ❤

The "may" could cost a lot of money, if your insurance doesn't pay for the scan. What does Bolognese charge for evaluating the MRI?

 

[rainbowbluebells]

Never apologise for delay in response, this disease makes life go a lot slower! ❤

The "may" could cost a lot of money, if your insurance doesn't pay for the scan. What does Bolognese charge for evaluating the MRI?

I’m in the UK and with no health insurance so unfortunately have to pay for it out of my own money. I think it is about $500 for dr B to review scans and €600 for dr G to review scans. I think I’m going to wait for scans and see what the report says and then decide what to do. I’m actually going to try to see if I can get a surgeon on the NHS to do my surgery if I do have any condition.. it’s a long shot but.. I had no idea the surgery cost so much. (Someone said 60-80k above). I thought it would be 10k I don’t have that sort of money at All.

 

[rainbowbluebells]

Hi I am still in a quandry about this myself and recently decided to get my upright imaging reviewed again with Dr Bolognese.

Is he now asking for supine MRIs though or is that just for patients unable to sit up for long enough?

I got uprights done in all positions last year and then had a consult with Dr Gilete who thought I may have cranial settling but was a bit ambiguous and I was put off by the fact that he started off talking about the images on the screen pointing things out for the first half of the consult then realized they were for the previous patient & got mine up.

Dr Gilete offered me a trial of a halo brace (like Jeff had) & I was very excited about this to see if it made a difference before committing to C0-2 surgery. However, the halo brace would cost about 8k which is a significant dent into what the surgery would cost, and worse I would only be able to have the halo brace on in the hospital for 48 hours, not come home with it as I had assumed. Apparently they are very expensive and not single use. I am not sure 48 hours would be enough due to my debilitated state, and also if pulling my head up helped things, it may become worse on removing the brace (like when Jeff removed his hard collar.

Obviously if the brace worked I would then need time to raise the money for the surgery itself. The scan reports from the UK MRI centres didn't seem to signify anything majorly abnormal other than a mild upper cervical scoliosis & mild hindbrain herniation (nowhere near a chiari) & wasn't even mentioned on the other upright scan.

I am interested in trying a philadelphia collar but am not sure how to size this. If anyone has any thoughts I would be most grateful.

B xxx

Hi,
So when I contacted Dr Gilete, his Secretary Amy said that the upright MRI is really the best thing to do as it can potentially diagnose CCI/AAI all in one scan. However if that’s not possible, to do a supine MRI scan with flexion/extension (3T preferred) and then also a CT scan in rotation.

Dr Bolognese just said do a supine MRI. But it might be because I said I’m very unwell and unable to sit up. But from what I’ve read he’s asking lots of patients just for supine MRI scans on this forum?

I think it’s a good idea about checking with Dr B and the ambiguity from Dr G does sound very stressful.. I would be very stressed and confused in that situation. Also, I had absolutely no idea it cost that much. I am sitting here in shock I thought surgery cost around 10k and was kinda happy as I had that much due to credit cards and benefit backpayments. I had no idea and feel sad because how many people who need surgery, are unable to get it, because of this?
Anyway, in my case I’m going to do a supine mri first and then think about what to do. I may get a CT scan too. And then maybe get a report from Dr G/dr B and then send it to my GP and ask if there’s any help for me on the nhs.

 

[Remi]

I read on here that dr G charges 260 euros for evaluation. Someone who worked in neurosurgery theatre as nurse told me operations are always this expensive.

I’m in the UK and with no health insurance so unfortunately have to pay for it out of my own money. I think it is about $500 for dr B to review scans and €600 for dr G to review scans. I think I’m going to wait for scans and see what the report says and then decide what to do. I’m actually going to try to see if I can get a surgeon on the NHS to do my surgery if I do have any condition.. it’s a long shot but.. I had no idea the surgery cost so much. (Someone said 60-80k above). I thought it would be 10k I don’t have that sort of money at All.

 

[rainbowbluebells]

@bombsh3ll i also just had a thought. You said your scans didn’t show any clear CCI.. the scans you had done in the UK. Whereabouts did you have them? I’m wondering if it’s because the MRI scans were weaker in strength.. because I’ve heard 3T MRI scans show a lot more.(think they’re only available for supine though).

 

[rainbowbluebells]

I read on here that dr G charges 260 euros for evaluation. Someone who worked in neurosurgery theatre as nurse told me operations are always this expensive.

Oh yes sorry you’re right.. the figure I was quoting was for a full medical report
“Evaluation of your case would be 250€ (consists of an answer by email with diagnosis and surgery consideration, if necessary).

If a full medical report needs to be completed and signed by Dr. Gilete, the cost is 600€.”

 

[rainbowbluebells]

Also.. just to complicate matters. I thought I’d pass on this info for people who are looking into this.
I’m in a UK chiari and CCI group. I was explaining how I literally cannot sit up unless I lean my head on someone. Someone very helpful said to me that I should have an MRI/CT of my full spine as actually some issues from lower down can impact the cervical area which is why some patients with CCI/AAI who get fusion don’t get full relief from symptoms. This may be a good point as I actually also have scoliosis and my pelvis is tilted. May be useful to others too.