Hi thanks for the add,my story have had a Syrinx on my spinal cord c2c3 since 2014 after a MRI, but was never told and was told nothing wrong with my back having excoriating pain in lower back,visiting hospital on other related things twice by diffent consultants,how my operation went on my back,puzzled at the time ask what op then they clam up ,so naturally thought was a mistake,just out of a 2 week stay in hospital with excruciating back pain and lose of leg feeling ,was told i had liquid on the spinal cord and all different docs with different things,one doctor came in and said good news that what I had in 2014 has slightly shrunk and went to walk out i ask what he was talking about,flustered said will come back,still nothing on discharge was still told nothing everytime i ask they clammed up,i now know on discharge papers about this but discharged told nothing and no appointment ,on reading up on this its not good .rant over thanks for listening
Syrinx on the spinal cord : Hi thanks for the add... - LUPUS UK
Syrinx on the spinal cord
Hi Safster,
I'm sorry to hear that you are have experienced such poor communication from your medical team. If you are in England, you may wish to discuss this with the hospital's PALS team to see whether they can help resolve this problem? You can find details of the PALS team at nhs.uk/Service-Search/Patie...
Hi Paul I have actually emailed pals with my complaint and not happy how i have been treated but nothing up to date coming back from them,will let you know their outcome if they ever get back to me x
If you don't hear from them, try giving them a call or arranging a meeting with them if possible.
Had a letter from pals today,apologising will get back to me by the 13 th of November, won't hold my breath because they always find an excuse but time will tell .
Hello Safster
Sorry to read your post. As Paul said, very poor communication.
I have a syrinx on my spine.
My story is that I complained to my Rheumy of increasing back pain and stiffness. She sent me for an MRI. It said that I had a syrinx cyst.
Here is the exact wording:
The lumbar spine was initially imaged.
It was noted that the central nerve canal was prominent in the lower thoracic spine at the T10 level and therefore T1w and T2w sagittal series have been performed through the cervical and thoracic area.
Alignment is maintained at all spinal levels other than straightening of the normal cervical lordosis which is consistent with pain or muscle spasm.
There is a small syrinx in the distal cord which extends from the upper border of T9 down to the mid-part of T11 but which is maximum at T10. Signal in the spinal cord is otherwise normal with no cord expansion and no evidence of a syrinx at any higher level.
The cranio-cervical junction is normal and the lumbar conus is in the normal position at L1 with no evidence of cord tethering.
So I then had another MRI at a later date to see if it was growing.
I was told that actually I had two areas of inflammation on my spinal cord but that neither were big enough to be considered syrinx cysts.
This has confused me! As the first was definitely reported as a syrinx!
Anyway, luckily for me neither areas are growing. I am symtpom free, in that I have no loss of sensation or use of my legs etc.
My back pain is related to osteoarthritis it seems.
The "inflammation" on my spinal cord does play on my mind, especially as I have high signal white matter on my brain MRI too. It worries me that this is indicative of central nervous system involvement with my SLE. But all doctors just keep telling me it is a coincidence. Including the Neurosurgeon. But none of them had any knowledge of lupus. Mine will not be investigated any further and I am refused an appointment with a Neurologist, despite these symptoms and a life time of chronic headaches/migraine etc. I also get muscle twitches and the wet leg and back sensations. It's an ongoing battle for me, as I just want an answer from someone who has knowledge of Neuro and Lupus.
Anyway, re your case. You are entitled to apply for copies of all of your medical records. It is your right under the Data Protection Act. I have recently written to my local hospital asking for an MRI report and blood test results etc. I could message you a copy of my draft letter, if you want. They might charge you. The max used to be £50 for a full set of your records but I am not sure if that is still the case. But once you have a set of your records, you can check your notes out for yourself. Nothing will be hidden from you. Also, I ALWAYS ask every doctor to send me a copy of their follow up letter, after seeing me in clinic. They will do this. I ask that my reuqest is noted on my file for all correspodence. Or telephone your doctors secretary and ask her to CC you in to all letters.
I hope I have helped a little. Please let me know if you have any other questions.
Best wishes.
Wendy
Hi Wendy thank you for your reply ,what a mess these so called doctors are hard to find a good one nowadays, I was diagnosed in 2012 with cervical myelitis and had stable lesions on my spine from c2 down to c7,a rare neurological condition same as the syrinx is suppose to be rare,anyway was signed of by Neuro as nothing they can do in 2015 put on gabapentin,before she signed me off had a few MRI done unknown to myself the 2014 scan showed this syrinx and wasnt told but signed off with this in my c3 to c5,i had another unrelated MRI Done in 2016 for excrusiating back pain may i add had this problem for a few years also fobbed of ,they refered me urgently to a mr a consultant was told nothing wrong with my back once again,signed off from him only that one appointment,on reading his report he looked at a 2015 MRI REPORT not the 2016 MRI confused I am,well it turns out I have degenative disease in my lumber area ,not told once again,two weeks in hospital find out about liquid in my brain stem then told I have a lump, then told I had a cyst,back compression top and bottom of my spine slipped disc two protruding discs ,my report to be seen by the neurological team with in two wks been out of hospital 3 wks nothing,MRI report rule out ms whole spine abnormal focal syrinx on the c3 to 5 level this has stable appearances since previouse scan dated 13 june 2014 radiculopathy,contrast enhanceds scan is recommended for further evaluation MRI with contrast abnormal tiny high signal intensity foci in the periventricular white matter and within the cervical cord from c2 to c7 level remain stable.yet I got told by a top consultant oh plus I have Ostro in my spine which a piece has broken away and causes me very painful back spasms told nothing wrong with me,so what do I do just carry on with my arms and legs getting weaker ,neck problems also with spodilosis, think I ready for the knackers yard lol thanks for listening,I know we all have problems so makes the burden shred and halved carole
Saftster,
I have nothing to add, as do not know of the conditions you have.
As someone who suffers recurring prolapse discs (and have had one episode of sciatica), I also get weakness and/or numbness in my left leg. It can be scary.
So, I just wanted to say, I feel your pain. I also feel your frustration, over poor communication issues, with some hospital staff. Poor communication, is one sign, of a poor standard of care.
Caring for a patient's, physical, spiritual, psychological, social, and emotional well-being, is paramount, for effective care.
If each person, who has poor care, reported to PALS, service providers, would have to improve their care. Patients would get the care they deserve.
Well done, speaking out about your experience.
Good luck. Get well soon. X
Thank you webar feel for you too,I have recurrence of same thing ,get frightened which way to bend turn or reach up without getting a shock through my body and then the pain,ending up in bed because can't move the pain is excruciating, but then family dont understand think,you are putting it on ,family A,well I really hope you dont suffer to much,and thank you for your time to write to me.
Safster,
I am so sorry to hear that you are still struggling with the pain. I wish I had a solution for you. Not getting support from family makes everything feel worse.
I will just tell you that I did experience the 'electric shock' pain on 2 occasions. You are right, it is shocking, and frightening, when it happens. As you describe, the pain shot up my spine, so shocking, so bad, I burst into tears!
On both occasions, I was having a meal at friends home. Sitting at the dining table, (friends chat, drink, you know, taking all the time to enjoy...), but for me, I know, for sure, that sitting/eating position, for too long, exacerbates the pain in my spine. I tell my friends. Without doubt whoever's hosting, always says, let's move to lounge now... this is what helps, people supporting. They don't have to understand, people, just support please!
So, another thing that works for me, when I feel my back getting weak, I do know if it struggling, as those spasms start. I have an arrangement with GP (agreed with my request, she suffers pain in back), I get diazepam 2mg prn. In layman's terms, that means, to take when necessary. (I am allergic to anti-inflammatory meds, more's the pity).
Once the back goes into a huge spasm, it takes so long, to recover, and so many pain relief meds, plus physiotherapy. By prescribing me a packet of diazepam 2mg, only ever when needed, (as can cause addiction), saves the health service a lot of precious time, and money. The diazepam, by allowing the body to rest, stops the spasm, reduces the pain, and I'm good to go, till next time.
I hope you can take something from what I share. I urge you to have an honest chat with GP. Tell them you feel let down. You want to help yourself.
I was a trained nurse, taught that pain is when/where the patient says it is. Don't feel worse from poor treatment.
Thank you yes I know when it's going to start starts on my left side like kidney pain ,then just kicks in,I take tramadol and paracetamol that helps,but can't get better then when medics come and give you the old gas and air lol
Mine starts kidney area too.
Diazepam is a muscle relaxant. One or two tablets 2-4mg usually sort the problem for me. (I get through a pack of 28 in over a year, as I'm so on top of it now). It seems such a waste of resources that you seem to only get some relief by being in hospital.
I can understand the pain level escalating (I have suffered excruciating pain, 3 times in 20 years), to a medic thinking gas and air only option. But, in my humble opinion, no one should have to get to that level of pain recurring,
without the correct treatment plan.
I am grateful that, for the most part, I can manage with the correct plan. I would not want that hellish pain again.
Look after yourself. X
Hello again
Not sure if this will help or not. But I posted about my brain MRI and spine MRI / possible syrinx and being denied a Neurology referral.
Some of the replies are form people with syrinx and/or spinal cord inflammation.
Thought you might be interested and could ask them questions. Feel free to crash my post, as Twitchy has said.
here's a link.
Best wishes
Wendy x
Well I now have my appointments for neurologist and pain management,heard from pals instead of telling me about my complaint they said there is more to it than they thought so have to wait till Dec 18th for a answer, so at last May get a answer,my Neuro app is 4thdec so will come back and let you know how I get on,hoping it wont be my last one.pain management January.
Hello Safster
How did the PALS and Neuro go?
Wendy x
Hi wendy39 still nothing from pals although phoned them twice ,and the suppose to get back to me.the appointment I had was with my old Neuro who said it was my yearly check up puzzled as I said to her you signed me off over 2 yrs ago which she denyed told her think you are mistaken anyway she knew nothing about my last mri said was in the system searched but she came up with a old one and showed me my lesions etc it wasn't my latest see date on the bottom reckons i haven't a sprinx so none the wiser I think they are all covering themselves so going to take it further,funny get signed off then get appointment told a yearly check up told I haven't got a sprinx,but new Mri x 3 shows I have same Neuro that signed me off and heard nothing from pals, phone them again tomorrow before I get in touch with the medical ombudsmen,
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