Just a brief follow up. I am one week post surgery. I feel better every morning, but by mid - late afternoon the pain and lightheadedness set back in. I guess it will be weeks or months before I am back to myself. Most challenging pain comes from the jaw which has inflammation and restricts movement. No pain from the surgery site at all. Not a drop of any liquid from the incisions. Hearing is very very muted still, worse than pre surgery, but that was expected... It may take 6 or more weeks to get better. Tomorrow I have to gather myself up to go to the hospital for a hearing test. Part of the program... Will see the doctor right after. No pain that Tylenol couldn't conquer, so thankful for that. Eating three squares a day, but lots of chopped and easy to chew stuff. Will follow up again in a few days. For those that want more research, my doctor did a second study that was published in 2016. A bit harder to locate online, but discoverable in full free of charge.
I hope I am not breaking any rules providing this here in the forum. Endolymphatic Duct Blockage for Refractory Ménière’s Disease: Assessment of Endolymphatic Sac Biopsy on Short-Term Surgical Outcomes It was not easy to find or re-find. He told me yesterday that there will be follow up studies on the many patients including in these studies, but did not indicate when.
My follow up post is being moderated... I guess because it includes a link. If it does not show up, and is permitted by the rules I will point people in the correct direction. Cheers.
Almost two months now. Can't say that I am feeling "great" but I have definitely improved. My hearing is coming back slowly as the fluids in the middle ear are resolving. I have other ear issues with overlapping symptoms, so still trying to sort out the differences. I am following up today because I, like Marta, felt like I was having an attack. No vertigo, but ear and head pressure. I also felt my eyes "slipping" slightly as if vertigo might happen. It started a couple of days ago, and tonight it was at its worst. Took some Valium and it helped. No vertigo. Definitely feel crappy though. I know the success of the surgery cannot be judged for at least 6 months. As long as there in no vertigo, and I become confident in that, I can learn to live with these "off" periods. My doctor is quite sure that there is a migraine component, and I am inclined to believe him. My whole head is buzzing on my bad days. On the good days the fullness is less, but always there to some degree. Could also come from my dehiscence as could the migraines. Next year I may have MFC surgery to repair that. Oh, the joy... Lol Will post again in another month. Cheers
I am reving this post. It is officially been 5 years since I had my EDB surgery and I wanted to do a follow up. I am now 5 years vertigo free. I have my life back. I do not have my hearing back although it has improved fractionally from pre-surgery. Dr feels that could be brain compensation. I guess no one will ever know. At least it hasn't gotten worse. Pressure is there from time to time but nowhere near at the level it used to be. Tinnitus is screaming loud pretty much all the time but I've learned to drown it out for most of it. I still have good days and bad days. Of course the good days are never symptom free but they are fear free and I guess that's the most important thing of all. I do not have fear of going out into the world anymore. It's a yucky day out here today so I've been looking at some of the threads on this site concerning EDB surgery and I do have a couple of comments. I should note that I am part of some other support groups and in contact with other people who suffer just like us and have had the surgery just like me. Of primary importance is that you have a surgeon who is very skilled and experienced. There are surgeons that are picking up the technique from the surgeon who created it but they have not yet completely developed the skill set necessary to guarantee success. Do your research. As far as CSF leaks ago they are part and parcel with the type of surgery that it is. Because portions of your outer brain need to be manipulated in order to complete the circular cutting of the canal to expose the membrane and attach the clips the risk of minor CSF leaks will always be there. A quality surgeon will spot them and repair them immediately. My doctor noted on my post-surgical report that I did have a couple and he fixed them on site and that was it. Any doctor who tells you that the risk factors based on CSF are a reason to not do the surgery is a doctor who does not have the skill set and knowledge to perform the surgery. Naturally he will advise you based on his own experience. You must base your conclusion on your research and decision making. It is definitely a more complicated surgery even though the mastoid approach itself is not complicated. It can change your life as it has done for me. My doctor has been doing it now for about 15 years. He has now seen it all and he is still confident that there is nothing else like it. And I had the confidence in him that if there is a better way it will be he who finds it. Cheers to all who live with this awful condition.
