Well--I had posted I was going to have this--and did this past Friday. Hoping that it would seal a 'spinal fluid leak'! Blood is drawn from the artery in one arm, then injected into the spine!! My neurologist felt this could be the problem after looking at an MRI and hearing my history. He knows I have Meniere's and all treatments for these symptoms haven't helped. Since I had a leak a few years ago, he said it's worth trying to see if that is the problem. Well, after 5 days, my head is the same and some times worse--So not sure where the blood goes if one doesn't have a 'leak' (probably just is absorbed.) The procedure was not a walk in the park--not so much pain, just the position was uncomfortable and you have to lay flat for awhile on your back before heading home--then for the next 24 hours. I had such high hopes of this helping--and have been told it can take a few days--but right now, I'm not encouraged. Anyone here had this done and if so--can you share our experience? Thanks
I'm sorry that I can't give you any information, yanksgirl. You are so strong to endure what you have. My heart goes out to you. I hope you know that you are an inspiration for enduring all that you have with such a positive attitude . I've read lots of your posts and you always stay classy. I'm wishing that you get lasting relief very soon.
Thanks Melc--right now I don't feel so 'classy'! But it's nice to hear anyway. I hope to get some answers and even encouragement form others here and especially from my doctor when I send a note on 'patient portal' tomorrow (if they don't contact me first). I will update so that if anyone here has had experience with having a blood patch--it can shed light for them too. Tonight the pressure is really more intense! I am wondering if when folks here talk about 'fullness' they are talking about what I refer to as 'pressure'! I don't have it in my ears--though my voice and others these days sound like they are 'in a well'. But I've always referred to it as 'pressure' in the upper portion of my head. Could be we are saying the same thing--using different word. Again--thanks for your encouragement! Much appreciated
I'm with you yanksgirl - I feel like it is pressure over fullness. I explain it to others as feeling like there is a balloon deep inside my ear being blown up from the inside and it wants to burst. It is definitely one of the worse symptoms - after vertigo, dizziness and hyperaccusis ???
I think we use "fullness" and "pressure" for the same feelings. I, as I'm sure everyone else does, have a problem communicating how I feel. Other than the term "shitty", if I don't just say "I'm fine". I have an app on my phone that is a noise generator. I use that to show people what the tinnitus is sounding like. Sometimes I'll hear things on the television and I'll rewind the program to let my wife hear how some things sound during an episode. As far as strength goes, people with chronic illnesses are among the strongest people I've ever met. Keep on fighting folks.
Thanks Coach--you have to either decided to 'hang in there' and keep on keeping on--or give in and be miserable! I have to admit--I have to 'give in to being 'miserable' at times but pretty quickly 'get with it' and get going--it helps some--not always. But you do have to keep 'fighting'!
Don't give up on it yet yanksgirl. I've had both meniere's and a later csf leak (from lumbar surgery). Had a laby for the meniere's, and the csf leak affected my laby ear something terrible. Lot's of roaring tinnitus and pressure. It's a long story, but basically, when the csf leak cleared up, it took a couple of months for my ear to get back to normal. From what I've read about csf issues, this is common. Best of luck!
Thanks Michel--Today is 'not good'. Feeling very flushed--fullness/pressure--but heading to church. I need to be there==I make it everywhere else that's important, so this is the 'most important' and has been for years--so I need to be there. Friends, message, music (that I really can't enjoy much anymore) but the words still mean so much. So--another day--important one--Sunday's. Hoping and praying for all of us--God Bless!