Back issues following lumbar punctures

[Whatters]

On the 1st Feb I was admitted to hospital and after a number of lumbar punctures was diagnosed with actue meningitis.

My first lumbar puncture needed to be repeated as I was already on antibiotics which effected the cultures.

During my second lumbar puncture the doctor attempted three times but failed. I had another doctor repeat the process later that day.

The meningitis was treated and after 11 nights in hospital I was sent home with my spinal fluid leaking from the failed lumber punctures. I was re-admitted a week later where I ended up going to theatre to have a blood patch (where my own blood was injected into my spine to stop the leaks).

I have had back pain ever since. I have an mri scan on Monday. The doctors were convinced that it would get better by itself with time.

Has anyone else had any long term back problems after the lumbar punctures and if so what? I am at my wits end the doctors has resulted in prescribing me tramadol and diazepam which has turned me into a zombie and I cannot function like a normal human being.

It’s bad enough having to deal with the after effects of the meningitis (which I have received absolutely no aftercare for) let alone this back pain.

Any advice / shares experiences would be greatly received.

X

[kalirachi]

It is quite apparent that doctors need more training in carrying out lumbar punctures. This is a very serious procedure which can have drastic consequences if not carried out correctly. When my own LP was bungled I later complained to the neurologist I saw after leaving hospital. He said around a third of LP's carried out in Brighton at their main hospital are traumatic. He was unable to explain why. My procedure was carried out by a junior doctor under the supervision of a consultant. It was very unnerving from the start as it was clear she didn't have a clue what to do and ended up piercing blood vessels and contaminating the sample. It would be interesting to know how many people end up with long term problems when things go wrong, and how many people actually take legal action against the hospital. Being placed on psychotropic drugs like diazepam to cope with the pain and distress caused by what should be a simple procedure is wholly unacceptable by any standards.

[Whatters in reply to kalirachi]

Thank you so much for your reply much appreciated.

The fact also that they knew full well that my spinal fluid was leaking and sent me home for a week ringing me everyday to check how I was doing - on realising it wasn’t going away by itself I was re admitted for another week where they deliberated what to do with me as they didn’t want to go back into my spine due to the damage they had already caused - when the symptoms got too bad I was sent for a blood patch which in itself was traumatic as I was so poorly my arms were struggling to give blood!

I am going to see what damage has been done to be spine and then consider taking legal action - I have spent a fortune on various prescriptions and have not been able to live my normal life with the back problems I have been left with. I once boxed but obviously cannot do that anymore.

We’re you left with any long term pain?

X

[kalirachi in reply to Whatters]

Fortunately for me no long term pain just a residual headache which lasted a couple of days. From what I understand this is not unusual. I did suffer in many other ways by the continuing misdiagnoses and totally inappropriate treatments. I felt so ill at the time the last thing I could think about was complaining about the appalling treatment I received and considering legal action against this particular health care trust. I did however complain to the NHS 18 months after leaving hospital when they misdiagnosed Unilateral Vestibular Hypofunction (a damaged vestibular nerve) as BPPV (benign paroxysmal positional vertigo) and carried out a series of Epley maneuvers which made the position very much worse. Their reaction to my complaint was to arrange an appointment with a Professor of neurology and neuro otology in a London hospital. I obviously hoped this consultation would produce some sort of treatment plan but I was disappointed yet again. All the Professor could do was to recommend anti anxiety medication and antidepressants. He explained that I was 'probably' suffering from a degree of PTSD caused by the whole bungled hospital experience and although I certainly didn't appear to be either anxious or depressed the medication, Sertraline' might help me to cope with my new incapacity!!! I now have a very cynical view of the whole medical profession and will steer clear of doctors for as long as I can.

[Whatters in reply to kalirachi]

Sounds absolutely awful I really feel for you!

There should be better procedures put in place for LP ie any old person can’t do them.

The surgeon that did my blood patch actually commented on what a mess they made of my back!

[ElSmith2017]

First of all I am so sorry to hear that you’re struggling. Many of us on here can empathize. I just wanted to leave a quick note to say, I too had many issues with my back post lumbar puncture. I was once fit and healthy 2 years ago until I became unwell. I am now bed bound at 26. However, aside from this - it took 9 months to be able to sit up straight after the lumbar puncture. One Dr came in and took over the procedure half way through and had a good sociable chat with the Dr performing the Lumbar Puncture and so my needle was moved around quite a bit. The pain was insane. I could not straighten my back - but now it is ok. I do hope I can bring some comfort in saying that I didn’t think it would improve but it has - and the pain is now minimal most days. It just took me a long time. Sending you lots of healing thoughts and hope that you feel a little relief sooner rather than later!

[Whatters in reply to ElSmith2017]

Thank you so much for your reply.

That does help to know that and fingers crossed it will just be a time thing just frustrating as I just want to know what’s wrong with it!

Sounds like you have been through it as well

It’s useful and reassuring to speak to people that are going through/have been through similar experiences to yourself as with no aftercare from the hospital it’s difficult to know what to do next sometimes x

[Hidden]

I am so sorry for your botched LP debacles. As if meningitis and its residual effects aren't bad enough, to go through this seems especially unkind.

I've had probably five LPs in the last decade, and I've never experienced what you're suffering. Although I was unconscious during the two for meningitis, I wasn't left with back pain or new CSF leaks. The three I had while conscious were done in my neurologist's and oncologist's offices and stung no more than a blood draw. Like Kalirachi, I had headaches for a few hours following the procedures, but that was it.

I'm concerned that these botched LPs resulted in CSF leaks. While I don't want to frighten you, CSF leaks can result in meningitis.

I'm puzzled why the doctor prescribed a benzodiazepine. I understand the tramadol, but aside from anxiety, benzos are usually only used for seizures or muscle relaxers--and there are far better alternatives.

Hoping you find some relief from this nightmare.

[Whatters in reply to Hidden]

Yeah the CSF leaks were so bad I couldn’t raise my head from lying down and they left me like that for two weeks!

Fingers crossed I’ll get an answer from the MRI as to what is wrong🤞 the pain is getting worse as well which is worrying. It took me to have a full on break down in the drs for them to take me seriously 🙈