Hidden

Hello. It must be scary for you. I had TBM when I was 39 and I remember nothing at all about going to hospital but I am told I was in a confused and semi comatose state for a few weeks. They put you on very strong meds because it can take a while to get a diagnosis but they cant wait for the diagnosis to start treatment. If it is TBM then it is a long slow recovery and she will need a lot of support and rest. The hospital will tell you about funding or you could go to citizens advice. Sorry, but I dont know about the financial side of it. I wish you and your mum all the best and you are in the best hands now.

ABenjamin in reply to Hidden

We are going through a similar situation with my brother. He is just now coming out of a comatose state. He has been hospitalized for 11 weeks. He is able to slightly move arms and legs and is begininning to try to communicate. Were you able to make a good recovery?

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Srikc in reply to Hidden

Thank you. Good to hear about your recovery.

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ABenjamin

I am so sorry to hear about your mother. I know exactly how scary this is for you and your family. We are going through the exact same thing with my brother. On May 20, 2015 he was admitted to the hospital. He was having mild headaches for a few weeks. That day we found him confused, unable to speak clearly and unable to walk. The emergency room said he suffered a possible stroke, later that night they diagnosed him with meningitis. They were unable to give an immediate cause and started treatment for bacterial and viral meningitis. A couple of days later they suspected it could be TB meningitis. He was worsening on the viral and bacterial meds. On May 27, 2015 he suffered a grand mal seziure and was trasnferred to anotheer hospital. The specialty hospital sedated him and put on a ventilator to let his brain rest and stop seizure activity. On May 30, 2015 they started the TB medication. They said that it could take days or weeks to get accurate results. At this point, everything they tested him for was negative or the cultures did not grow anything. He also had a drain put into his brain to remove excess fuild. Since that day he has had brain surgery to put in a permanent shunt, a brain biopsy, a trach and removal of ventilator. The infection to the brain was so diffuse causing meningitis and encephalitis. The infection was aslo down part of his spinal cord. This is partly due to the fact that the start of the TB medication was so delayed. The TB diagnosis was finally confirmed from a spinal fluid taken in May. We did not get this diagnosis until the third week of July. He is now awake from coma. He is slowly showing progress and can do a little more each day. He can make some movements with arms and legs and can follow some commands. Each day is an unknown journey. They doctors told us he would be severly disabled, yet he has already made more progress than expected. It is still to early to tell what the future holds for us. I do think that your mother has a much better chance of recovery due to the fact that they started the TB medication so early. Do not let them stop the TB medication if a test does not come back positive, ours took about 7 weeks. It is very difficult to diagnosis. It took us about 6 weeks to see any improvement from the TB medication. We were told that the greatest predictor of the outcome is the condition when the medication is started. We were started on a round of 4 different TB antibiotics.

My family memeber also had no insurance. This has been a difficult hurdle for us. We are waiting on the approval of Medicaid (US Goverment insurance) so that he can receive the therapy he needs. In the meantime, the hospital we are in provides indignet care.

Srikc in reply to ABenjamin

Thank you. I wish your brother good recovery.

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Hidden

Yes, I think speed of diagnosis is the vital thing here. I am sure now that he is on the meds he will respond and then there will be an improvement. I did not improve fast but that was because i had an additional illness which had not been diagnosed but once they realised that I think improvement was quite fast. I was in hospital from August and.`woke up` fully in October and was discharged from that ward 2 weeks later. I needed anti TB drugs for about 6 months, I think and had retrograde amnesia (which I still have 14 years later) and was extremely weak but it can be beaten.

I am sending out positive vibes to you all. You will need to be ready for him to have changed. He may not be exactly as he was or be able to resume his life just as before (i am told i am different but I have lost my memory so don`t know if its true!) but he will need your love and patience. Very best wishes to you xx