Does any of ypu had serious balance problems. I mean like feeling that you have to stand widely on your legs, but without vertigo, more like dizziness. and serious vision problems. Deas it go away after the surgery?
Hi yes i have awful dizziness even when im sat down, feel like im going to balack out, its an awful feeling, i also have vision problems, blurred vision, and its terrible still waiting to see consultant.
I had both Eagle and Superior Canal Dehiscence Syndrome. Eagle did not cause the symptoms you are describing, SCDS did.
You need to have a good ENT and a specialized CT scan read by a qualified technician. I had two surgeries for both syndromes and for the first time in years I feel like a human.
Hi Kazza could you find out something about your dizziness? Cause?
kazza said:
Hi yes i have awful dizziness even when im sat down, feel like im going to balack out, its an awful feeling, i also have vision problems, blurred vision, and its terrible still waiting to see consultant.
Yes.I am having it right now. been having for the past one year or so and it is frustrating. I just could not move around. Sitting in same position does not cause any issue but when I lean back or if I stand and start to walk , I feel a short moment of imbalance like I am gonna fall.I was prescribed āVertin 24mgā for the dizziness and imbalance but that does solve the whole problem. Vertin just increases the blood flow to the ear so as to prevent vertigo and imbalance.I am too scared to go for surgery. First of all I should confirm if it is ES or not first.probably should take a CT.
Talking about CT.Shd I take a CT of head or neck? which part covers the ES?
A CT of the head and neck will show the styloids best- they grow down from the base of skull, so you should make sure that area is covered. In the US people request that theyāre specifically evaluated for ES & that the SPās are measured, so presumably the radiologists will be trained to look for the same in India.
Vertigo is quite common; if you search for that (use the magnifying glass icon at the top right of the page) it will come up with quite a few older discussions which you might find interesting. Thereās also info in the Newbies Guide section- a member IamGroot has āvestibular rehabā which he found helpful, hereās a link:
Member IamGroot-has tried āVestibular Rehabā exercises to help with dizziness if thatās a symptom you have- the exercises are designed to help the body adjust to postural changes. Hereās a link to some I found online, but always check with your own doctor before doing these exercises: www.thewaltoncentre.nhs.uk/.../Vestibular%20Rehab%20Exercises.pdf3
Hope this is helpful!
Hi Ladygw,
Itās good to know that you are feeling better. I was finally diagnosed with bilateral ES. I was also diagnosed with Meniereās Syndrome in 2003, prior to retiring from the Army. Itās definitely been a long journey for me. I had several surgeries for Meniereās that really didnāt help me. Iāve had extremely loud ringing in my ears, fullness, vertigo and balance problems. I never felt that I had Meniereās. Last October, I woke up in the middle of the night and could barely hear out of both ears. It was very scary! ENT docās said it was just my Meniereās acting up. Through my journey searching for answers and still unable to barely hear, I was finally diagnosed with ES by my VA dentist using a radiography, then confirmed by my ENT with a CT scan. I just had surgery several weeks ago with Dr Samji. He told me after my surgery that I had the thickest calcified ligament that he has ever seen; as thick as a fat pencil and about 7.5 cm long. Iām intersested in learning more about Superior Canal Dehiscence Syndrome. Iāve never heard of this condition. I might have it. What kind of CT scan did you have and what did your doc do to fix it. Also, I would like to thank Jules for everything that sheās doing for this site and for her passion and compassion! Mahalo, Mac
Glad you find the site helpful, Mac! The original discussion was a while ago, so just in case you donāt get a reply from Ladygw, hereās a link to a SCDS charity with some good info: https://www.scdssociety.com/
Thank you, Jules! I was reading some of your previous comments about some of your symptoms prior to surgery hyperacusis, tinnitus, etcā¦) how long did it take after both of your surgeries before things started to calm down? Itās been two weeks since having my surgery and things are pretty much the same. My next surgery is in January. What do you believe was causing the issues jugular vein, etcā¦)? Mahalo Mac
Hi Mac, I also think I read some discussion about this condition posted by Amyblue following her surgery with Dr Forrest? I hope my memory serves me well and you find some more help from her posts too.
Mac- the worst of the vascular symptoms, like the off-balance, feelings of falling down, & feeling āout of itā went within a few days, once the swelling had gone down. The vascualr symptoms were caused by the styloid process compressing the jugular veins pretty much along the whole of itās length, one side was really squashed! I still get some tinnitus, itās not completely gone, but it is less than it was. After my second surgery I lost alot of my hearing on that side, but I think it was a nerve thing, because it suddenly got better after about 2 weeks. The pain etc settled down gradually, but I do still get some nerve pain from the Trigeminal Nerve; itās usually well controlled with medication. I would say that Iāve noticed some improvements still up to a year post-surgery.
Alot of the ES problems are irritated nerves, & they can take a long while to settle down & heal, so donāt panic, and try to be patient!
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Hey Mac,
Dr. Samji did both of my surgeries. It took about 2 months post op for me to start feeling really normal again. At the time I had mine done, he required 6 months between surgeries (I begged him to do my second side sooner but he flatly said NO!!). Youāre fortunate to be in his ānew eraā of the 3 month interval!
You may barely feel back to your old self before you have your second surgery, but take heart, in many cases the second surgery is an easier one to recover from than the first. Weāre not sure why, but it seems many people experience less post op pain & quicker healing. I know Jules & I both had that experience.
As Jules said, be patient with your body. As your swelling goes down, your nerves & other irritated tissues will begin to heal, but the process is a slow one. The biggest help you can give yourself is to rest a lot & even if youāre feeling good, TAKE IT EASY for at least the first couple of months post op.
Mac, Great to hear of your good news. Seems like once these battles begin, they just keep occurring layer after layer.
SCDS is found through CT scans, they must be a specific type and read by a radiologist who is familiar with the syndrome. I know I would have not lived had this been ignored much longer by my dr. The energy it took to correct these was tremendous; I had no one to lean on. In fact, many thought I was making it up. It hast taken a few years to adjust to the changes, and for my body to build a new pathway as it were.
Two years ago I had surgery to fix a brain fluid leak (CSF) behind my nose/eyes. The procedure that was used at that time was crappyā¦ I had a long time overcoming the aftereffects. I still deal with the resulting loss of smell and taste for 90% of life. The symptoms from the CFS were similar to the SCDS ones.
As a result, I believe, of the CFS surgery, I ended up having terrible infection in my sinuses. The ones in my forehead were so bad I ended up in emergency for a CT scan (after yelling at a substitute dr when she manhandled my face). The ENT ended up having to build a drain from my forehead to my cheek sinuses; the one which should have been there ā wasnāt, who knows why, probably from birth. That procedure destroyed part of my sinus cavity. Another challenge.
I also have developed patulous Eustachian tube, or had identified it. Where the ear is like there is air in my end and I am talking in a bubble. That had been part of the symptoms of the previous conditions, so it has all been like chapters in a book.
At least my most recent surgery had nothing to do with my headā¦they had to rebuild a thumb joint which had been worn out by too much physical work (small bones, build, doing a manās jobā¦). That was just a ānormalā procedureā¦
So, sorry to go on like this, but I do want you to know that I have total empathy for your situation. I truly pray that you will find a time when you can go back to enjoying life. I have to remind myself I am so fortunate that I found some solutions and that I can help others thru their suffering. I am also kinder to myself than I used to be ā I can sit down and take a nap if I want, eat something just to eat it, go do something for fun. At least now that those around me understand what has happened, I donāt feel so angry or defensive trying to tell them why I am what I amā¦ I used to be laughing and singing, full of joy, before all of this; but that became too difficult and it hurt my head so I quit. I am trying to regain some of that spirit.
Take care and have a wonderful season, no matter how you approach it. Our invisible ailments are scary to others.
Alice
Vkossa: Thanks for the information 
Wendy, thank you for the information. With all of my ES issues, it lead me to early retirement. Iām definitely taking it easy to heal properly. By the way, I tried to get Dr Samji to do my second surgery 10 weeks after my 1st surgery, but he said absolutely no. Iām happy that I donāt have to wait 6 months :-)
Alice, itās good to know that you found light at the end of the tunnel. I am definitely learning about Patience. Do you remember what kind of CT scan you had for SCDS? I also developed bilaterial Eustachian tube issues back in 2009. I traveled to Geneva Switzerland to have a special procedure done because numerous ENT docās didnt know what to do to help me. The issues came back several years ago; now I have tubes in my ears. Dr Samji believes that the ES surgeries might help relieve my issues. I guess that only time will tell. Iām praying that my tinnitus starts to calm down as I heal. Thank you so much for sharing your information :-)
Jules: Thank you for your feedback. I believe the worst of my vascular symptoms will improve with my next surgery in mid January. When I touch the right side of my face, the tinnitus gets louder and my hearing dissappears for a few seconds (seems like a irratated nerve or blood flow issue). That ear is also sensitive to sound and feels full at times. Iām learning that ES can cause a lot of crazy symptoms and that everyone with ES can have different problems. My hearing came back a little today, but faded out as the tinnitus got a little louder. Iām praying and being patient as my healing journey continues. I still canāt believe that Dr Samji said that I had the thickest calcified stylohyoid ligament that heās seen. Mahalo, Mac 
Sounds like youāve been through so much, Alice- you sound very strong & positive. I hope that gradually things will ease & that you will regain your joyful spirit, & that you find people to support you. God Bless 
Mac,
Glad to hear youāre taking it easy but sorry to hear that your health issues forced you into early retirement. Hopefully once all is taken care of & youāre healed, you can begin to enjoy your extended retirement.
I mentioned that I had a bike accident the week before my scheduled second surgery & since I sustained a head injury, Dr. Samji made me wait another 3 months before having surgery. Though his decision was wise & the wait necessary, I almost cried. In the 6 months since my first surgery my pain had vastly intensified. He chose to remove my right styloid first because though it wasnāt creating much pain, it did produce vascular symptoms when I exercised. I actually pled w/ him to do the left side first because I was in such pain from the left styloid. His decision about the surgical order was best for me. He is a good & wise surgeon.
