Monday, 17 October 2011


So, I have been dicked around by the hospital one too many times. They cancelled my surgery!!! And to make matters worse, they then just sent me home. The neurologist felt I didn't need the surgery, even though my pressure was 35, this is not too high. He started me on topirimate. This didn't work, as I suffered an allergic reaction when I tried to take 50mg. I developed a rash all over my body. So back to square one. I have requested that I no longer be treated at my local hospital. They seem to not really care, the emotions they put me through, constantly changing their mind. I just feel that I would be better off being treated at another hospital. I also put a complaint in about the way I was treated, not by the nurses but by the doctors. I am going to see a NS privately up in London to ask his advice and see what he thinks. Just got to wait for the hospital to send me a copy of my medical records and MRI/CT scans on disk and then I can book an appointment. When I was in touch with his secretary last week she said I could be seen as early as 27th October, I will not make that appointment due to the wait for my medical records but it does show how quickly I could be seen, amazing what chucking a bit of cash can do!!
I seem to be complaining a lot recently. I also put a complaint in about a locum GP I saw. I saw her back on August 5th, 6 days after my surgery. I attended the appointment suffering from a headache, vomiting, photophobia, sore neck and was feeling feverish. She told me to go home and rest. She said, What did I expect, I had just had brain surgery?! I explained that I had been feeling not too bad, but had suddenly gone downhill. She told me I could go to A&E, but it would be a waste of time and I would be waiting for 6 hours. She did not take any observations ect. I ignored her. Upon arriving at A&E I was in majors within 10mins, and in an MRI scanner within 2 much for waiting 6 hours. I was then in hospital for a month with meningitis. Today I received an email stating that the doctor had written a response to my complaint and I should receive it later this week!! Kinda nervous about what she will say.
SO yeah, had a crap week, which is why I have not updated. I will update again when I get a letter back.

Tuesday, 11 October 2011

Surgery tomorrow!

Having surgery tomorrow to fit a shunt. My headache has got increasingly worse since the lumbar puncture so they are fitting a shunt in the morning. Not sure of the time or anything, surgeon will see me later. Gunna be a breeze =D

Wednesday, 5 October 2011

I am not full of infection.

Today I was told that my CSF shows no signs of meningitis. This is the first time in 2 months that I have had no obvious signs of infection. They did say that there is still some inflammation, and this means that I am still on a high dose of steroids, but should start weaning off them in the near future. This is such good news, as the dexamethasone is known in this hospital as "the meanies and the munchies" They have turned me into a greedy strop head.

Other news. Head was amazing till 1am last night. Then it got worse. By 10am it was horrid and by about 7pm I was vomiting. Pressure is high =[

Tuesday, 4 October 2011

ANother Lumbar puncture and another surgery!

This morning I had a lumbar puncture. They decided to do this rather than the ICP bolt due to my still low immune system. A little hole in the back is nothing compared to a hole through the skull! Pressure showed up at 35, it should be no higher than 20. They drained me down to 11 and I feel great now =D
I have just seen my neurosurgical registrar who informed me that 35 is too high and I shall need to be shunted. He has gone to speak to my consultant and they are going to get back to me, when I don't know but it should be later on today. Brain surgery again, more hair gone. Oh this is fun =D

Sunday, 2 October 2011

ICP Bolt information (google)

Intracranial pressure monitoring
Intracranial pressure monitoring uses a device, placed inside the head, which senses the pressure inside the skull and sends its measurements to a recording device.

How the Test is Performed
There are three ways to monitor pressure in the skull (intracranial pressure).


The intraventricular catheter is thought to be the most accurate method.

To insert an intraventricular catheter, a burr hole is drilled through the skull. The catheter is inserted through the brain into the lateral ventricle. This area usually contains liquid (cerebrospinal fluid or CSF) that protects the brain and spinal cord.

The intracranial pressure (ICP) can be monitored this way. The ICP also can be lowered by draining cerebral spinal fluid (CSF) out through the catheter.

The catheter may be hard to get into place when the intracranial pressure is high.


This method is used if the patient needs to be monitored right away. A subdural screw or bolt is a hollow screw that is inserted through a hole drilled in the skull. It is placed through the membrane that protects the brain and spinal cord (dura mater). This allows the sensor to record from inside the subdural space.


If an epidural sensor is used, it is inserted between the skull and dural tissue. The epidural sensor is placed through a burr hole drilled in the skull. This procedure is less invasive than other methods, but it cannot remove excess CSF.

Lidocaine or another local anesthetic will be injected at the site where the cut will be made. You will most likely get a sedative to help you relax.

First the area is shaved and cleansed with antiseptic.
After the area is dry, a surgical cut is made. The skin is pulled back until the skull is seen.
A drill is then used to cut through the bone.
How to Prepare for the Test
If you need this procedure done, you will be in the hospital and most likely in an intensive care unit. If you are conscious, your health care provider will explain the procedure and the risks, and (as with any surgery) you will have to sign a consent form.

How the Test Will Feel
If the procedure is done while you are under general anesthesia, you will feel nothing until you wake from the anesthesia. At that time you will feel the normal side effects of anesthesia, plus the discomfort of the cut made in your skull.

If the procedure is done under local anesthesia, you will feel a prick on your scalp like a bee sting as the local anesthetic is injected. You may feel a tugging sensation as the skin is cut and pulled back. You will hear a drill sound as it cuts through the skull. The amount of time this takes will depend on the type of drill that is used. You will also feel a tugging as the surgeon sutures the skin back together after the procedure.

Your health care provider may prescribe mild pain medications for relief. You will not get strong pain medications, so that your doctor can check for signs of brain function.

Why the Test is Performed
This test is usually done to measure intracranial pressure. It is usually done when there is a severe head injury or brain/nervous system disease. It also may be done after surgery to remove a tumor or fix damage to a blood vessel if the surgeon is worried about brain swelling.

High intracranial pressure can be treated by draining CSF through the catheter. It can also be treated by changing the ventilator settings for people who are on a respirator, or by giving certain medicines through a vein (intravenously).

Normal Results
Normally, the ICP ranges from 1 to 20 mm Hg.

Note: mm Hg = millimeters of mercury

Note: Normal value ranges may vary slightly among different laboratories. Talk to your doctor about the meaning of your specific test results.

What Abnormal Results Mean
High intracranial pressure means that both nervous system and blood vessel tissues are under pressure. If not treated, this can lead to permanent damage. In some cases, it can be life threatening.

Brain herniation or injury from the increased pressure
Damage to the brain tissue
Inability to find the ventricle and place catheter
Risks of general anesthesia
Alternative Names
ICP monitoring; CSF pressure monitoring, ICP bolt

Quick weekend update!

So today I had a few hours release from hospital. I was allowed 2 hours out in the afternoon and went to TGI Fridays and had a nice grilled chicken for lunch.
The ward has been so hot, hitting 29* outside, and we are in a glass room. The lady opposite me is so rude, she even shouted at Jacob this afternoon.
Tomorrow I have 2 eye appointments. One with my squint doctor and one with my eye doctor. Then as far as I know it is bolt time. ARGGG! Was so happy to have got out of having that! I'll update tomorrow.
Last comment, people are starting to comment on my posts and I cannot reply, as I am on 3G internet.