The chief of Neurology at a hospital here near us, after seeing me 3 times now and seeing MRI films of my head/spine, says he sees what he believes to be a 'spinal fluid leak'! That would explain the awful head pressure/ dizziness going on when I'm upright and eases when I recline or lay down. It has literally taken my quality of life away for a few years now. I am scheduled in the next 2 weeks for a Blood patch--taking blood from an arm and injecting it into the spine (area where the leak appears to be). May have to have a 2nd patch--just have to see if one 'does it'! I had two of these many years ago--after I developed a 'leak' following a Myelogram! It brought on the most horrible headache you can imagine--called a 'brain banging' headache. Evidently it can occur in other parts of the spine--not just the brain--and cause these other symptoms w/o the headache! I am soooo thankful for a diagnosis and do hope this cures this awful quality of life altering condition going on for several years now. I will keep you posted. Something some of you 'might consider' asking about if your symptoms--along with having Meniere's mimic mine. Who knows--maybe it will even help the hearing/tinnitus issue I have. Don't have vertigo--since the shunt surgery thankfully.
I hope it does not sound bad but it is good news. I hope the doctors will stop the leak and you will get your life back! Wishing you luck. M
Thanks Marta--I do too! I felt like crying when the doctor told me he felt my issues with the pressure, etc. were related to the 'leak'. So, I have 'high hopes'!
yanksgirl, I sure hope you have found your answer. You must be so excited to move forward and find out if the patch will end your problems. You will have a whole new life! This is great news.
Cheryl--yes, I am 'cautiously optimistic' to say the least! I know there is a possibility that this isn't the answer--but it sure seems to be right now. Thanks for your encouraging words.
The best of luck to you Yanksgirl! I am still having the headaches and pressure, but far less often than a few months ago. I am planning to go to a Neurologist about this after dental surgery.
Thanks for the information Yanksgirl. From your information on spinal fluid leak, it is often connected to leak in inner ear, as we can find from the description of perilymph fistula (fluid leak in inner ear) below. http://vestibular.org/perilymph-fistula Good luck, and please keep us posted.