Today the area at base of my skull/top of my

Patient

Q: Today the area at base of my skull/top of my neck between muscles occipital area swelled up. The fluid has dissipated down my spine in last few hours but my base of head is still painful. Should I be in hospital? My GP refused me an urgent referral and says I have to wait a month to see a department who already refused to treat me.

I have broken spine at L4 and mid c spine that has remained undiagnosed after severe domestic violence 3 years ago, because I couldn't get to hospital and was drugged with LSD and opiates so badly I could walk. The injuries happens as forcible drugged with GHB and raped. It dislocates and relocates in both positions, later MRI's showing only secondary damage to tissues. At time of injury, much gulf flow down spine, leak at lumbar, ab swelling, sometimes hydocephalous with swelling above neck injury building with pressure inside head room spin round, then releasing if back of neck squeezed. When fluid drain down spine sense like ballon deflating in top of head and headache like a heavy weight on top of head.

Have had bad neck pains and heavy headache on top of head nosy of last few weeks (sometimes the guild pressure improves for a while the it all drains low again if dislocation or relocation occurs.

I have odd build up of pressure in head then lots of loud sucking clicking noises as other fluid thick drain down from top down by ears and back of neck assuming this is lymph build up and purge v painful recently frequent again mostly immobile as this happens.

Lumbar relocated this morn followed by lots of fluid flow down spine swelling at base of skull shooting pains in all limbs numb feet and hands and L1-4 anal area (damaged nerve proven by last MRI) near to losing consciousness loss of mobility until lots of rest and swelling went down.

I think my science is reasonable appreciation if problem having survived 3 years without care on LSD damaged nerve system with herbs and feeding sound with honey, eating coconut folic acid etc.

I'm having a really hard time getting through to these people that I'n an anomaly but I exist by luck of drug damage and dissociative out of body tendency and sheer will to stay alive. Had to walk to stay alive, so I forced myself to. My body adjusted over time to make less CSF due to leakage at both dislocation sites- body is clever

That's the background but back to simple question - what is the swelling at the base if my skull and why are my doctors not responding?

Also what tests are appropriate to study the chamber that should be just CSF on top of brain? How can I prove about it deflating to make headache? I wonder if Glymphatic system damaged as stuff seems to collect- wondering if nature abhorring a vaccuum perhaps waste products collecting on top of brain where they should be leaving in flow?

My doc says she doesn't know what tests would help. She said lumbar puncture. I asked about PET? Is there a way to image the whole issue of spine and brain and fluid flow?

Many thanks

Amy

Doctor

A:   Hi.
Thanks for your query.
Read and understood your concerns.I am so much sorry to know your history and the damage that was caused by the incidence.
*Back to simple question - what is the swelling at the base if my skull and why are my doctors not responding? Also what tests are appropriate to study the chamber that should be just CSF on top of brain?

In the present day advances, the MRI is powerful enough to diagnose most of theproblems that you have.
injecting a particular dye in the lumbar puncture and to see where is it leaking is a known test that you can insist upon.
It is possible that due to the reaction-causing nature of this dye the procedure is rarely performed and may be the reason for their refusal. (Some centers prefer not to do it).
** Simple FNAC - Aspiration and sending hte fluid for chemical analysis can tell whether this is CSF or Lymph.
*** Diagnosis
Tests requiring lumbar puncture:

There is some danger of exacerbating an existing leak or causing a new one leak with a lumbar puncture, and the risks/benefits must be carefully considered.

Radioactive label or a fluorescent dye injected into the spinal fluid to test for the label or dye in the fluid.
Radiologic studies are also useful; however, they may be impractical if one does not know the level of the leak.
Radioisotope cisternography characteristically shows a decrease or absence of activity over the cerebral convexities and early accumulation of radioisotope in the bladder. This study is somewhat invasive, requiring injection of material into the spinal canal.
PET is a part of Radio-uptake study.

* I would advise you to talk to the Radiologist nearby you to understand the best way out.

Take care.

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