Hello@judyinthesky. I'm sorry the lumbar puncture/spinal tap was hard on you. It could be that it was the "last straw" so to speak. The leakage is most unfortunate but it can and does occur. The headache (which I've experienced) is also a terrible side-effect.
Spinal taps are done to remove excess fluid, but mainly to look for infections and other sources of problems. They're a necessity in some of our cases. I'm sure you'll have more than one opinion on what you should do...and of course you're fatigued if you aren't sleeping even. Hospitals are terrible places for that to occur, aren't they? Even doctors readily admit it and try to get you out the door asap.
May I ask if you've had MRI's, CT scans and even x-rays performed? I know I was extremely depleted after my last hospitalization, but it was my 8th in something like 9 or 10 mos. I'm only just now getting back to outside walking (very slowly) and make a point of eating the proper nutritious food. Of course I now have added specialists (and more next week), meds and things to still figure out.
It isn't uncommon to feel alone and unheard while you're in the hospital...and your thinking can seize up, it does happen. You'll be able to make a more comprehensive list when you return home. Use the Patient Portal to send in a list of questions that you want your doctor to answer. This will probably take 10 days or so, but is probably the most effective way of getting what you want.
Don't forget to get copies of all records, CD's of different tests and then see your neurologist or internist (the only one who really knows the entire body as such). Yes, the others are specialists, and they'll readily tell you that fact. Neurologist are the most highly trained and are at the top of the medical hierarchy...so if you find one who patiently explains things and will share his knowledge of the body, then stick with him/her. The younger ones just starting their practices are often the way to go. They're still in a learning mode, have time and they won't be retiring on you.
I wish you well. Hope you'll be out of the hospital soon and can then rest in your own bed. It's the best place when we're ill. Yours, Lenora.
