Hello. My daughter has been diagnosed with this condition. Permanent pain is a feature. She also has arachnoiditis. Both are rare conditions (although they can go undiagnosed for years so not sure how really rare they are) I was hoping to connect with anyone who has similar issues.
Also, specifically, if anyone could recommend somewhere for physical therapy that helps with keeping spinal fluid moving. Thank you
Good morning, I’d never heard of these two conditions, but now, upon investigation, I certainly have a great many of the symptoms. I’ve been seeing rheumatologists and neurosurgeons for over ten years now, and definitely have a number of spinal problems, including Degenerative Disc Disease. I’ve slowly developed a left concave scoliosis during those years. Do you know of a specialist who deals with the condition?
Hello. We are quite new to all of this too but for arachnoiditis the best information is here acmcrn.org/ and here arachnoiditishope.com/ - information about syringomyelia is more readily available. I hope you don't have either of the conditions. I understand that the definitive way to diagnose is MRI. My daughter was diagnosed in Bristol and is now seeing a neurosurgeon at University College London Hospital. Where are you based? The acmcrn website has a few suggestions for physicians. Dr Tennant of the Tennant foundation kindly takes a look at scans for people. You can email images to him. Hope this helps
Yes, it does, many thanks. Do you know if the condition/s would be spotted ordinarily on spinal MRI scans, or are they difficult to diagnose in your experience?
from my understanding, syringomyelia is not difficult to diagnose on MRI. On the other hand, I have heard of people having difficulty with diagnosis of arachnoiditis. That's where Dr Tennant comes in. He's an expert and very helpful. Having said all that, my daughter's syringomyelia was missed and her arachnoiditis diagnosed by Bristol.
I shall look into it. Thanks!
I had not heard about these conditions and had to look them up. I would have thought you would get most support from a spinal unit or ideally spinal hospital. We have some of these in UK but can’t advise if you are in Italy.
Thank you for replying. My daughter is in the UK and just had her first appointment at UCLH. I was asking about physiotherapy as someone I connected with, who has syringomyelia asked if she was undergoing physiotherapy for it. I'm not sure neurosurgeons get involved with that type of advice. When my daughter asked what she could do to stop progression while waiting for the next scan, the doctor said 'nothing' but I'm not sure that's entirely true.
Hi. I have relatively severe Arachnoiditis from L1 with massive scarring in the Cauda Equina. It was diagnosed by having a Trans-foraminal spinal injection. When I looked up and saw the bunches of grapes in the spinal column I just cried. When asked by the pain specialst doing the injection why I was crying I said that I was so relieved that I wasn't going mad and that there was something wrong having been told there wasn't. My first appointment with this Doctor was interesting when he had my MRI scans on the light box. He asked what I could see. I replied that there was 1 white disc and the rest were black. I was spot on. There was massive inflammation in that disc. I had apparently fractured the end-plate of the vertebra in my massive car accident. He also saw my bladder exploding over the floor after the injection. I was still numb! (SOOOOO embarassing) It did however clarify the bladder involvment where the bladder does not close properly hence chronic infections!
In his world the doctor felt that this was the best way to diagnose Arachnoitits. Physio does not really help though full pilates with beds (Reformer)and other machines can really improve the rest of your body. Marajuana can be very helpful as rtreatment. I use legal (in New Zealand )CBD drops as I reacted to the THC with shocking nightmares. It does help the neuropathic pain though it does not vanish rather i s more manageable and life is easier.
Sadly it is progressive though slow at least. There is a very good handbook in the USA by a Dr Tennent (?David), Brilliant easy but clear read. Is my go to when needed for medical fights! It is frree And he updates regularly.
Hope this helps, what alovely mum you are!😍
Ciao
Anne C
New Zealand
Aawww .. thank you Anne. Sorry to hear about the arachnoiditis. I do hope you continue to manage the pain. I agree Dr Tennant is great. He's amazing and so supportive. Do you also watch his weekly youtube videos? He has actually just emailed with his comments on my daughter's MRI images, unfortunately confirming AA. He also said it's a rare form because it's also in her thoracic spine. He suggested some of the elements of his protocol. Although he did not say anything about the syringomyelia so I need to go back to him and ask about it. I have not heard of that injection as a way to diagnose arachnoiditis. Do you know what the principle of it is? And the bladder issue... were you told that is related to the arachnoiditis? My daughter is starting to get some bladder issues but they are due to nerves being damageg by the pressure of the syringomyelia (or the adhesive arachnoiditis - non sure which, maybe both) but I don't think the issues relate to bladder infection, more bladder control. She is using CBD and quite a few supplements, mainly from Dr Tennant's protocol. Also does yoga. She has stopped the pilates for now as you are not supposed to strain your neck with syringomyelia. I do find it shocking to hear that some people have suffered pain for years before being diagnosed with arachnoiditis. One would think that a quick memo to neurologists and neurosurgeons would educate them. We've had to learn about it fairly quickly. I don't mean become experts, but at least be aware and suspect symptoms and refer! Keep well and take care.
9The bladder stuff sets up the potential for infection and is caused by all the scarring compressing nerves etc. My definition is the Cauda equina looks like a ponytail filled with lumps of chewing gum! All specialists agree that is the best definition they have heard. It was what I saw on the screen the injection is carried under xray using heart imaging equipment. The injection is of dye to view the spinal cord. That was why it was irrefutable. The dye travels around the cord down to the Cauda equina. My friend had a compression fracture I n her thoracic spine and does have occasional symptoms though these are mild. She has other injuries requiring intervention so she has put these on hold.
Looks like you have found out pretty much all there is and the best people as well. The spinalfluid moves automatically and like a car we don't see it moving. We cannot influence that. Thr best thing is exercise which at my tender age of 74 I am not so gòod at that. I swim 3-4 00metres each week. Because of my low spine AA I do not use my legs at all. Your daughter needs to find the best option for her. Walking is the thing I am desperate enough to undergo a second hip replacement with bone graft to get back to normal walking!!
As Dr Tennant explains this is a bit of a sentence. Make sure she and you focus on hobbies or education to be done within capabilities. Blocking out helps. I watch rubbish TV!!🤗
.Travel is also great so long as well planned. Use assistance to reduce the fatigue. Take care and remember the rabbit hole is deep !
Hi. Yes I can see now that there could be infection issues with the bladder. A recent scan for my daughter stated there was clumping in the cauda equina (your description sounds spot on!) however Dr Tennant said that the nerves are still relatively free. New scan soon so we'll see which is which. Good on you for the swimming. A nice low impact activity.
Can I ask you: the reason you don't walk, is it because of the AA or because of the need of a hip replacement? My daughter's walking is starting to be affected but at the moment she can still walk - just a bit wobbly and she cannot stand on her tip toes anymore. This double whammy of AA plus syringomyelia is what we are trying to get our head around. Although ultimately as I understand it they both lead to pain and mobility issues.
Do you take anything else apart from CBD for the pain?
You are right about adjusting to what you can do and doing the best you can. My daughter is 30 and has a one year old baby. Despite the enormity of the diagnosis, we are determined to do all we can, even though even doing all the research is exhausting. It would be so much easier if upon diagnosis, the medical profession took you in their care and one could feel looked after.
The rabbit hole is very deep indeed!
Probably a bit o both though hip is dominant. Was trauma the start for your daughter or something else? I do know that any surgery causes a flare though I haven't had more scans etc. Because I think I reached a level of acceptance and know my future. That comes with understanding and knowledge. It may be useful for Occupation therapist input for managing fatigue. They have interesting ideas tho will need to increase their knowledge. Using a stick when young is hard but the benefit outways that. I would hang onto pram as much as possible. I am having the op to delay scooter.
Giant thoracic disc prolapse and thoracic surgery 
Nerve block ??
Pregablin instead of increasing fentanyl and morphine dose
