I received the MIDDLE FOSSA CRANIOTOMY on the left side.
I do have bi-lateral dehiscence and do currently have symptoms in my right ear.
My vertigo was noise and pressure induced as well, also induced by the sound of my own voice (I'm a singer and a professor). When I would speak loudly enough to be heard by a large room of students, I would become dizzy. Post your questions here. I cannot possibly be happier with the results of the surgery.
I do have bi-lateral dehiscence and do currently have symptoms in my right ear.
My vertigo was noise and pressure induced as well, also induced by the sound of my own voice (I'm a singer and a professor). When I would speak loudly enough to be heard by a large room of students, I would become dizzy. Post your questions here. I cannot possibly be happier with the results of the surgery.
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Hello everyone. I posted a lot of information on Mindy Haine's SCDS Support forum on my recent very successful Right Superior Canal Dehiscence (SCD) Surgery via a Middle Fossa Craniotomy approach which was performed by Dr. Lloyd Minor and Dr. John Carey at Johns Hopkins Hospital (JHH) in Baltimore on 11/09/07. Her forum has 85 members around the world and a ton of information and support.
It is important to note that there are other very qualified doctors who can also do this surgery throughout the world and many of the folks on either this forum or Mindy's have had great results with these doctors - regardless of the type of surgery performed. This is not to upset anyone who selects a different doctor or treatment plan, whether that be by firm belief in their own doctor's treatment plan, their geographical location, or financial options. Everyone's situation is unique and the decision to proceed with any surgery is and must be very personal.
After doing extensive research both on the internet, reading lots of medical papers by several doctors, I felt very confident selecting the Johns Hopkins Hospital team. Dr. Minor, who is also the Director of the Otolaryngology Department, discovered this illness nearly a decade ago. Dr Carey developed an imaging system to really hone in on the exact area before and during surgery, and believes this tool has been instrumental in their high success rate. Both have performed each and every surgery in tandem without much modification for the past 5 years.
Be aware that medical opinions differ widely. Most doctors use the middle fossa craniotomy approach (and even this is done differently depending on the surgical staff and hospital equipment), some doctors are doing the transmastoid approach (although every one I've run into had a lot of post op problems with this approach and weren't happy with the results), and I hear recently that some doctors are experimenting with less invasive procedures. SCDS study is still very new and data is still being collected. A recent study of 1000 cadavers showed only .5% with dehiscences. This is considered quite high in the medical field and I suspect we will be hearing about this disease more and more in the future.
Each individual's dehiscence can be very different. Some have a straight forward slit or hole directly over the superior canal, which can be very easy to plug. Some have more than one hole. Mine was a single 3mm slit, 1mm wide with no damage to any other area. The bone over my middle ear was completely intact and there was no "swiss cheese" affect. My hearing was good, and I had had no prior surgeries.
Those patients who have had prior ear surgeries may have a harder time recovering their hearing. The inner and middle ear sections are a hyper sterile environment. Once open it can allow the opportunity for white blood cells to enter and attack the ear which can killl off the hearing and balance system. This is something that everyone who has had prior surgery should discuss with their doctors in detail, as this may affect the level of results and possibly their hearing going forward.
While diagnostic tests (ENT, VEMP, and CT) will confirm SCDS, not everything shows up on the CT scan, not even scans done at .5mm in the recommended both planes. NO doctor will really know what they are looking at until they are in there. The inner/middle ear ear is only the size of a dime. The bone over the superior canal is about the width of a tooth pick. Dehiscences having a "swiss cheese" affect are very difficult to detect until they have the "hood open" and can see the entire area. While this type of dehiscence can be successfully repaired, it requires more work to make sure they get all the holes covered. The swiss cheese scenario is very hard to correct via the transmastoid approach, as you need to see the entire landscape to get them all. If a middle ear is found with any bone loss, or blood was allowed to enter this region, the access is simpler through a middle fossa craniotomy. My analogy on this is, do you really want to access an engine from the radiator? or just open the hood and be able to get to everything. This is not to say that these areas can't be repaired with a transmastoid approach or other procedure. But from purely a layman's point of view, I just feel it makes it harder to work cleanly, especially if complications present themselves. Everyone's body is unique and this is even more so with SCDS.
Lastly, I'd like to say that each person's body will react to surgery differently. That is true for ANY surgery. A Craniotomy is very big deal. It will stress and shock even the strongest body. Your body may be a real champion or there may be underlying issues that you (and your doctor) aren't even aware of. I had an ideal situation, snapping out of anethesia fast and clear headed. I also have a high pain threshold, so I didn't require any pain medication. Everyone's body will react to anethesia, pain medication, and trauma differently. I felt confident that the care I received 24 hours in Neurological ICU and then 24 hours in the step down Brain Recovery Unit at JHH assured the very best scenario should a bad situation occur. And luckily I didn't need any emergency assistance, but if I did, these folks are prepared for any event.
Good luck to all of you who choose the middle fossa craniotomy approach, no matter which medical team you select. Take your time in selecting a surgeon, but don't wait too long as your symptoms will only get worse, your sanity will be stressed, and your body will only become weaker due to reduced activity. You'll also want to be as well informed as you can, and ask lots of questions - of everyone.
For me the surgery was definately worth the risk. I can be around all types of sound now without any reaction and as such, feel like I have been given my life back!
Kathy W
It is important to note that there are other very qualified doctors who can also do this surgery throughout the world and many of the folks on either this forum or Mindy's have had great results with these doctors - regardless of the type of surgery performed. This is not to upset anyone who selects a different doctor or treatment plan, whether that be by firm belief in their own doctor's treatment plan, their geographical location, or financial options. Everyone's situation is unique and the decision to proceed with any surgery is and must be very personal.
After doing extensive research both on the internet, reading lots of medical papers by several doctors, I felt very confident selecting the Johns Hopkins Hospital team. Dr. Minor, who is also the Director of the Otolaryngology Department, discovered this illness nearly a decade ago. Dr Carey developed an imaging system to really hone in on the exact area before and during surgery, and believes this tool has been instrumental in their high success rate. Both have performed each and every surgery in tandem without much modification for the past 5 years.
Be aware that medical opinions differ widely. Most doctors use the middle fossa craniotomy approach (and even this is done differently depending on the surgical staff and hospital equipment), some doctors are doing the transmastoid approach (although every one I've run into had a lot of post op problems with this approach and weren't happy with the results), and I hear recently that some doctors are experimenting with less invasive procedures. SCDS study is still very new and data is still being collected. A recent study of 1000 cadavers showed only .5% with dehiscences. This is considered quite high in the medical field and I suspect we will be hearing about this disease more and more in the future.
Each individual's dehiscence can be very different. Some have a straight forward slit or hole directly over the superior canal, which can be very easy to plug. Some have more than one hole. Mine was a single 3mm slit, 1mm wide with no damage to any other area. The bone over my middle ear was completely intact and there was no "swiss cheese" affect. My hearing was good, and I had had no prior surgeries.
Those patients who have had prior ear surgeries may have a harder time recovering their hearing. The inner and middle ear sections are a hyper sterile environment. Once open it can allow the opportunity for white blood cells to enter and attack the ear which can killl off the hearing and balance system. This is something that everyone who has had prior surgery should discuss with their doctors in detail, as this may affect the level of results and possibly their hearing going forward.
While diagnostic tests (ENT, VEMP, and CT) will confirm SCDS, not everything shows up on the CT scan, not even scans done at .5mm in the recommended both planes. NO doctor will really know what they are looking at until they are in there. The inner/middle ear ear is only the size of a dime. The bone over the superior canal is about the width of a tooth pick. Dehiscences having a "swiss cheese" affect are very difficult to detect until they have the "hood open" and can see the entire area. While this type of dehiscence can be successfully repaired, it requires more work to make sure they get all the holes covered. The swiss cheese scenario is very hard to correct via the transmastoid approach, as you need to see the entire landscape to get them all. If a middle ear is found with any bone loss, or blood was allowed to enter this region, the access is simpler through a middle fossa craniotomy. My analogy on this is, do you really want to access an engine from the radiator? or just open the hood and be able to get to everything. This is not to say that these areas can't be repaired with a transmastoid approach or other procedure. But from purely a layman's point of view, I just feel it makes it harder to work cleanly, especially if complications present themselves. Everyone's body is unique and this is even more so with SCDS.
Lastly, I'd like to say that each person's body will react to surgery differently. That is true for ANY surgery. A Craniotomy is very big deal. It will stress and shock even the strongest body. Your body may be a real champion or there may be underlying issues that you (and your doctor) aren't even aware of. I had an ideal situation, snapping out of anethesia fast and clear headed. I also have a high pain threshold, so I didn't require any pain medication. Everyone's body will react to anethesia, pain medication, and trauma differently. I felt confident that the care I received 24 hours in Neurological ICU and then 24 hours in the step down Brain Recovery Unit at JHH assured the very best scenario should a bad situation occur. And luckily I didn't need any emergency assistance, but if I did, these folks are prepared for any event.
Good luck to all of you who choose the middle fossa craniotomy approach, no matter which medical team you select. Take your time in selecting a surgeon, but don't wait too long as your symptoms will only get worse, your sanity will be stressed, and your body will only become weaker due to reduced activity. You'll also want to be as well informed as you can, and ask lots of questions - of everyone.
For me the surgery was definately worth the risk. I can be around all types of sound now without any reaction and as such, feel like I have been given my life back!
Kathy W
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I've only just come across this web site. I'm from N West England.
I noticed dizzyness a year and a half ago. After much tests and a few consultants, I was sent for a CT scan and diagnosed with SCD. I had the operation on the 28th May 2008. I was told I would be discharged the day after - however I wasn't able to walk unaided until 1st June and only sent home from hospital on 2nd June. I have suffered terrible dizzyness since the operation. If I had to mark it on a scale 1 being good then my dizzyness prior to the operation was a 5 but now I'd say it is a 9. I haven't yet started back in work - so it's now been 6 weeks!! Work aren't very happy with me. I was never pre-warned that I could be this bad. I am on anit-sickess tables and constanly feel dizzy and sick. I am unable to drive and have terrible headaches. I have been told that the operation was a success but I have still yet to see the benefits. I just wish I was warned about the recovery time prior to the operation - it would have made me more prepared.
It's really difficult to know when I will be ok but because it is quite rare my consultants and doctors can't really give me any dates or gaurantees as with each patient they are building up a picture for the next patient.
I am a person that worries for the world and I worry that my works either think that I am stretching out the time off work or think that I am a liability.
I have a 5inch scare in my head from my left ear upwards and off course my hair is shaven in this area to. All this doesn't bother me - I just hope it was all worth it.
Is there anyone who has had the operation and has also experienced difficulties like I am facing?
Sue
I noticed dizzyness a year and a half ago. After much tests and a few consultants, I was sent for a CT scan and diagnosed with SCD. I had the operation on the 28th May 2008. I was told I would be discharged the day after - however I wasn't able to walk unaided until 1st June and only sent home from hospital on 2nd June. I have suffered terrible dizzyness since the operation. If I had to mark it on a scale 1 being good then my dizzyness prior to the operation was a 5 but now I'd say it is a 9. I haven't yet started back in work - so it's now been 6 weeks!! Work aren't very happy with me. I was never pre-warned that I could be this bad. I am on anit-sickess tables and constanly feel dizzy and sick. I am unable to drive and have terrible headaches. I have been told that the operation was a success but I have still yet to see the benefits. I just wish I was warned about the recovery time prior to the operation - it would have made me more prepared.
It's really difficult to know when I will be ok but because it is quite rare my consultants and doctors can't really give me any dates or gaurantees as with each patient they are building up a picture for the next patient.
I am a person that worries for the world and I worry that my works either think that I am stretching out the time off work or think that I am a liability.
I have a 5inch scare in my head from my left ear upwards and off course my hair is shaven in this area to. All this doesn't bother me - I just hope it was all worth it.
Is there anyone who has had the operation and has also experienced difficulties like I am facing?
Sue
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Hi, I was suffering from SCDS in 2002 had a CAT scan and was diagnosed and told that surgery was available for the condition - it had been bothering me for at least half a year before I had it diagnosed - but between the time that I made an appointment with the doctor and the time that she saw me, the problem started clearing up on its own. My conditionwasn't as bad as some of read of, where the sufferer's own body noises are hyperamplified ( though I did notice my pulse was quite audible in the afflicted ear) The surgery for this condition (if I'm not mistaken) involves exposing the skull where the thinness/dihisence is, scraping the bone (which stimulates the bone to repair itself, and thus make itself thicker). I was on a playground at my son's school and got whacked on the SCDS side of my head, quite hard. Not to make light of a serious condition, but I believe my own problem was serendipitously solved by getting hit by a basket ball on the side of the head. The thin area of the skull received a trauma, which stimulated the skull to repair itself.
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I have been suffering from undiagnosed dizziness for the past 2 years after a severe neck injury. Recently, my symptoms increased and took a turn for the worse. I have seen 2 ent's neither of whom came up with a diagnosis of superior semicircular canal dehiscence. But, neither of them did more than hearing tests and an eply manuever. That being said, my symptoms have worsened and I am scheduled for a VEMP at the end of the week. Although I have some of the "classic" symptoms of this condition, I have others which are not typical. I was hoping that I could run some symptoms by the experts and see if you could say whether my symtpoms were similar.
First, as I said, I have dizziness all the time. However, it is not room spinning dizziness. Rather, it is a feeling of imbalance, as if I am rocking back and forth. Recently, sleeping has become much more difficult. When I turn to my left side, not only do I hear my heart beat, but I also feel as if I am rocking back and forth as if on a ship. Finally, I wanted to know if anyone experienced ear pain with this condition. Both of my ears feel very sore, but especially my left one. The classic symptoms I exhibit are a feeling of fullness in the left ear, a distortion of my own voice to my left ear, and dizziness with loud noises.
One other quick question. I have tinnitus. I am curious if anyone else with this condition had tinnitus and if it cleared up with the surgery for superior semicircular canal dehiscence. Thank you so much for your help. I eagerly await your responses.
Michael
First, as I said, I have dizziness all the time. However, it is not room spinning dizziness. Rather, it is a feeling of imbalance, as if I am rocking back and forth. Recently, sleeping has become much more difficult. When I turn to my left side, not only do I hear my heart beat, but I also feel as if I am rocking back and forth as if on a ship. Finally, I wanted to know if anyone experienced ear pain with this condition. Both of my ears feel very sore, but especially my left one. The classic symptoms I exhibit are a feeling of fullness in the left ear, a distortion of my own voice to my left ear, and dizziness with loud noises.
One other quick question. I have tinnitus. I am curious if anyone else with this condition had tinnitus and if it cleared up with the surgery for superior semicircular canal dehiscence. Thank you so much for your help. I eagerly await your responses.
Michael
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My son is currently being tested for SCDS. I want to thank all those that have posted. I will post again if I have something that could hlep someone else with SCDS.
PJ
PJ
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http://en.wikipedia.org/wiki/Superior_canal_dehiscence
The above link will provide you with some useful informaton on SCDS.
The above link will provide you with some useful informaton on SCDS.
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My 7 year old son's CT scan was delayed two weeks because he had a cough and needed anesthesia for the test. We are hoping to find out the results this week. For anyone that had a high resolution CT scan -was the doctor able to see it without having to do another test? Our son has two or more symptoms in every symptom catagory of SCDS. We are grateful we may be close to a possible diagnosis but I have to admit the wait to find out is challenging at times. Our son has been in special needs type therapies and classes since he was two years old yet he can learn things instantly on the computer on his own. I will have much more to share if he is diagnosed but I don't want to get ahead of myself. His life is better since I put him on a soft food diet because he doesn't like crunchy foods- he hadn't gained one pound in about two years and he has gained 4.5 pounds since May 13th.
I want to thank every adult who has shared their experiences with SCDS... I found it most helpful to learn more about SCDS and find more examples of symptoms.
Thank goodness for Dr. Minor who found this and all of the great doctors that are dedicating their work to helping people get their lives back or in a child's case find out what life is suppose to be like.
PJ
I want to thank every adult who has shared their experiences with SCDS... I found it most helpful to learn more about SCDS and find more examples of symptoms.
Thank goodness for Dr. Minor who found this and all of the great doctors that are dedicating their work to helping people get their lives back or in a child's case find out what life is suppose to be like.
PJ
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Hi everyone!
I was newly diagnosed with SCDS here in Stockholm/Sweden at Huddinge hospital (Karolinska hospital).
My symptom is unbearable becuase I have dizziness (not so much yet) nausea,sensitive to loud noises and BRAINFOG and FATIGUE and MIGRAINE!
Is there anyone out there with this TERRIBLE BRAINFOG?! I can,t concentrate enough anymore and the fatigue is not funny to have.
I have read that these symptoms could also be involved:(
I allready had migraine before this and the SCDS makes it even worse. I also have a hip replacement in titanium ( I am only 38 and woman)
and because of the dizziness I am afraid of faint or falling because that could be a risk for my hip implant.
They want me to wait with surgery(perhaps becuase it will come better surgerys soon and becuase the Dr.said to me there is allways a risk of other damages of the ear.)
BUT can I wait?! I have all the reasons to get a surgery but I will talk to the Dr. here is Sweden and ask if there is a possibility to get the surgery
somwhere else (it,s a matter of money and if they are willing to pay for my surgery in for example US. Of course I wish for the best Doctor I could find,like many more here!
My brain fog and headache is actually the most difficult symptoms to handle. My husband and I also is planning children before I get to old,and how could I be pregnant now with all this?
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Hi!
I am so happy to hear that there is HOPE!
I am living with this syndrome and I have symptoms like brainfog,fatigue,migrain,dizziness...well I am longing for a surgery!
Here in Sweden they can provide the "plugging method" .Is that what you did or did you have another method?If so is it big risks with that?
I am happy to hear that you now feel great and I hope I get there soon too!
I am so happy to hear that there is HOPE!
I am living with this syndrome and I have symptoms like brainfog,fatigue,migrain,dizziness...well I am longing for a surgery!
Here in Sweden they can provide the "plugging method" .Is that what you did or did you have another method?If so is it big risks with that?
I am happy to hear that you now feel great and I hope I get there soon too!
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HOPEand LOVE wrote:
donegalpunk wrote:
I received the MIDDLE FOSSA CRANIOTOMY on the left side.
I do have bi-lateral dehiscence and do currently have symptoms in my right ear.
My vertigo was noise and pressure induced as well, also induced by the sound of my own voice (I'm a singer and a professor). When I would speak loudly enough to be heard by a large room of students, I would become dizzy. Post your questions here. I cannot possibly be happier with the results of the surgery.
Hi!
I am so happy to hear that there is HOPE!
I am living with this syndrome and I have symptoms like brainfog,fatigue,migrain,dizziness...well I am longing for a surgery!
Here in Sweden they can provide the "plugging method" .Is that what you did or did you have another method?If so is it big risks with that?
I am happy to hear that you now feel great and I hope I get there soon too!
Yes, my superior canal was plugged so I now have two canals in my left ear instead of three. Since the surgery, I have taken up boxing and Brazilian Jiu Jitsu and done quite well. I have had no issues with balance whatsoever.
My symptoms included autophony, vertigo, tullio phenominon, Pulse-synchronous oscillopsia, hyperacusis, fullness in the ear, brain fog, fatigue (from poor sleep), and migraines. I had the surgery performed by Minor and Carey at Johns Hopkins. My surgery was on a Friday morning at 6am and I left the hospital on Sunday after lunch. We remained in Baltimore at Dr. Minor's request for a week after surgery and I was walking around unassisted within a day or two after discharge. I was told to expect a return to work after 6 weeks but was in the office checking mail and having lunch with folks after only 2-3 weeks. I stayed out the full time so that the scar would heal and not freak people out.
I remember clearly being in the hotel room the week after the surgery. My wife and father were staying with me and they went to the store. I sat on the bed and realized, for the first time in my life, my head was silent. I nearly cried. My symptoms were reported as far back as I remember--even at age 3 or 4 I would tell my mother that I heard "trains in my ears" when I laid down in bed. I now know that was the sound of the blood in my veins that I heard my whole life.
best of luck to you.
best of luck to you.
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I too suffer from what I've called being "dumbstruck," it drives me crazy. I thought I was alone it this particular symptom.
I suffered from this and other symptoms for over 4 years and, in the past, was told it was most likely a combination of sinus issues, caused by allergies, and eustachian tube dysfunction.
Thankfully the doctors at UCSD recognized my symptoms and tested for SCDS, all tests confirmed the diagnosis and I'm currently discussing the surgery. Like you, it's the secondary symptoms that are driving me mad! I can deal with the hearing loss, however being "dumbstruck," finding myself off balance, getting carsick, migraines, the loud internal functions, and having my eyes flutter when hearing certain frequencies is maddening. If the secondary symptoms are improved, I will consider the surgery a success!
Good luck to you in your decision making process.
Shannon
I suffered from this and other symptoms for over 4 years and, in the past, was told it was most likely a combination of sinus issues, caused by allergies, and eustachian tube dysfunction.
Thankfully the doctors at UCSD recognized my symptoms and tested for SCDS, all tests confirmed the diagnosis and I'm currently discussing the surgery. Like you, it's the secondary symptoms that are driving me mad! I can deal with the hearing loss, however being "dumbstruck," finding myself off balance, getting carsick, migraines, the loud internal functions, and having my eyes flutter when hearing certain frequencies is maddening. If the secondary symptoms are improved, I will consider the surgery a success!
Good luck to you in your decision making process.
Shannon
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Hi all and thank you for your "good luck" wishes! ( We will all need it:)
This is important........ there is TWO surgery methods out there and that is plugging and resurfacing.
I joined a great FORUM for SCDS persons and from there I now know SO MUCH MORE about this horrible condition!
I realized that everything I need to know is there,recommendations from others about best doctors,the outcomes of surgerys,
lifestorys,the best doctors when it comes to "plugging" OR resurfacing (after I read about the two kinds of surgerys I realized that I want resurfacing. I want my highway to work again.There is no "wrong" with plugging but if you have holes in every canal you cant, plug them all,that will be no balance left. If you resurfacing them it,s like "repair an old highway so you can drive on it again(OR in medical terms "make the balance fluid to flow through it again and restor it;)BUT in the forum you will get the best info.from every source you need to get the best "resurfacing doctor" IF you decide that instead. My advice is before you decide what doctor you want READ...READ...and read:)As I said before,it,s ok to plug but as myself I am bilateral with a hip implant and that is why I want the resurfacing,because I want it all to be TOTALLY back to normal (every patient have been that after this method but not with just any doctor there a a few out there that really CAN do it with the best "state of the art" material to repair it with and the best equipment for it(microscope;)
Here is the link:
http://scdssupport.org/forum/index.php GREAT and you will start to think about what will be the best out come for you!
GOOD LUCK TO YOU ALL AND I PRAY THAT WE ALL WILL BE BETTER SOON!
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