Nice informative post Kathy, I'm scheduled for a Right SCDS repair in one week. Can I ask how the past 3 years have been for you??
Dear Vegasguest,
If your PTs were not vestibular rehabilitation therapy trained and certified (such as the Herdman/Shepard course and certification), then don't trust their opinion without a seocond opinion from a VBRT (vestibular rehabilitation therapy) certified PT. PT's get very little training (if any) in most PT programs regarding vestibular rehabilitation and even less regarding vestibular disease diagnosis and treatment. It is standard for your balance and dizziness to get much worse (primarily in the first 2 weeks) of effective VBRT. If you are nauseated, do not take typical anti-nausea meds like Anti-vert/Meclizine or benedryl, etc. These make your central nervous system "doped' and unable to "see" the error messages you are giving it from being dizzy in the exercises in order to fix the system gain and make the dizziness less. Basically the brain has to be able to see (be dizzy) the problem in order to fix it. Anything that makes you sleepy makes this either slowed or stop. You usually can ask your physician for Zofran to help you if you are nauseated as this is less of a CNS depressant (if any). The VBRT is worth it if the holes have been properly patched or plugged. With the surgery, the latest research is showing that when the retractors are removed from lifting the brain for patching/plugging the canal, the pulling out of the retractor can actually pull off the patch or dislodge the plugging. Therefore, surgeons such as Dr. Larry Lundy at Mayo Clinic Jacksonville, are investigating alternative approaches that allow the retractor to be removed differently so that the brain coming back down and retractor removal does not knock out their work but instead helps hold it.
Find a VBRT Herdman/Shepard certified PT and go back for a second try. The more you don't move the worse dizziness and imbalance gets.
If your PTs were not vestibular rehabilitation therapy trained and certified (such as the Herdman/Shepard course and certification), then don't trust their opinion without a seocond opinion from a VBRT (vestibular rehabilitation therapy) certified PT. PT's get very little training (if any) in most PT programs regarding vestibular rehabilitation and even less regarding vestibular disease diagnosis and treatment. It is standard for your balance and dizziness to get much worse (primarily in the first 2 weeks) of effective VBRT. If you are nauseated, do not take typical anti-nausea meds like Anti-vert/Meclizine or benedryl, etc. These make your central nervous system "doped' and unable to "see" the error messages you are giving it from being dizzy in the exercises in order to fix the system gain and make the dizziness less. Basically the brain has to be able to see (be dizzy) the problem in order to fix it. Anything that makes you sleepy makes this either slowed or stop. You usually can ask your physician for Zofran to help you if you are nauseated as this is less of a CNS depressant (if any). The VBRT is worth it if the holes have been properly patched or plugged. With the surgery, the latest research is showing that when the retractors are removed from lifting the brain for patching/plugging the canal, the pulling out of the retractor can actually pull off the patch or dislodge the plugging. Therefore, surgeons such as Dr. Larry Lundy at Mayo Clinic Jacksonville, are investigating alternative approaches that allow the retractor to be removed differently so that the brain coming back down and retractor removal does not knock out their work but instead helps hold it.
Find a VBRT Herdman/Shepard certified PT and go back for a second try. The more you don't move the worse dizziness and imbalance gets.
Hi Kathy,
I have to say how helpful your post has been. A well-written and comprehensive opinion based on personal experience *and* a review of the literature is hard to come by. Thank you.
Over the last two years, I've had two transmastoid resurfacing surgeries for SCD and two basal skull surgeries for patulous eustacian tube (same side). The second surgery for the patulous eustacian tube jostled out the fascia shim from the first transmastoid for the SCD. The second transmastoid surgery has left me with severe vertigo. Now, facing surgery number five, I am to decide whether to have the same surgeon try the transmastoid *plugging* (which cuts right through the canals), or have another surgeon try the middle fossa craniotomy. I think I am leaning towards the craniotomy given that the other two unsuccessful transmastoids may have caused some additional problems in there; though my ENT surgeon wants to try the plugging through the mastoid again.
I'd appreciate your thoughts when you have a minute.
Shannon
I have to say how helpful your post has been. A well-written and comprehensive opinion based on personal experience *and* a review of the literature is hard to come by. Thank you.
Over the last two years, I've had two transmastoid resurfacing surgeries for SCD and two basal skull surgeries for patulous eustacian tube (same side). The second surgery for the patulous eustacian tube jostled out the fascia shim from the first transmastoid for the SCD. The second transmastoid surgery has left me with severe vertigo. Now, facing surgery number five, I am to decide whether to have the same surgeon try the transmastoid *plugging* (which cuts right through the canals), or have another surgeon try the middle fossa craniotomy. I think I am leaning towards the craniotomy given that the other two unsuccessful transmastoids may have caused some additional problems in there; though my ENT surgeon wants to try the plugging through the mastoid again.
I'd appreciate your thoughts when you have a minute.
Shannon
Could you please let me know which surgeon you saw? I am in Toronto and I would like to see someone with experience in SCD.
Thanks for sharing.
Thanks for sharing.
Can you tell me how to find this SCDS support group on Yahoo? I have been diagnosed with Bilateral Superior Semi-Circular Canal Dihesence. I was told I could have my ear drums slit open and a piece of skin placed inside (in other words a second layer to my eardrum). This apparently gives 25 - 75% relief instead of the major surgery. Have you heard of this and did you have cranial surgery? If so, who performed the surgery? I live in Toronto, Canada. Tks.
C.M.
C.M.
It'a a long time ago for you so I hope you reply. I have seen a specialist in London Ont. and would sincerely love to talk to you regarding this surgery. I also have bilateral SSCD and need the surgery.
C.M.
C.M.
Kathy,
Thanks for sharing. i was just diagnosed for SCDS after the CT scan and VEMP. I have it on both sides so I'm looking at 2 surgeries 6-9 months apart. I live in Milwaukee but may travel to JHH to have them do it. Some questions I have:
1) What was the post recovery like?
2) How extensive was the therapy? Was that done at JHH or where you live?
3) Were you advised that this condition will worsen over time?
4) My doctor only does 2 a year which is concerning, I assume JHH doctors do more?
5) I was told there is a 10-15% risk of hearing loss and 1% risk of facial nerve damage - is this consistent with what the JHH doctors told you?
Thanks for sharing. i was just diagnosed for SCDS after the CT scan and VEMP. I have it on both sides so I'm looking at 2 surgeries 6-9 months apart. I live in Milwaukee but may travel to JHH to have them do it. Some questions I have:
1) What was the post recovery like?
2) How extensive was the therapy? Was that done at JHH or where you live?
3) Were you advised that this condition will worsen over time?
4) My doctor only does 2 a year which is concerning, I assume JHH doctors do more?
5) I was told there is a 10-15% risk of hearing loss and 1% risk of facial nerve damage - is this consistent with what the JHH doctors told you?
Please join scdssupport . org, it has a wealth of knowledge, first-person accounts of surgery, and answers to your questions, not to mention great support!
Did your symptoms worsen over time? Worse after flying? Did you experience any problems post surgery?
Where did you have the surgery and by whom? I live in Milwaukee, and have a doctor that finally diagnosed it, but he only does 2 a year which is not very comforting.
Did you ever hear back from people regarding Mayo?
How long did it take before you felt normal? How noticeable is the scar? Did
Hi could you send me name of Dr please ? in London ?
I'm in Winnipeg, MB
Thx
I'm in Winnipeg, MB
Thx
Still looking for any info or assistance you can provide. I feel I'm at a stand still at least here in Canada. Could re-visit my Dr. in the U.S. but very costly as OHIP will not pay as I didn't have and couldn't get prior approval with no diagnosis or prognosis.
benmaggs wrote:
None in Toronto that was up on BSSCD - my Dr. was in London, Ont. His name is Dr. Lorne Parnes.
Dizzydi wrote:
Could you please let me know which surgeon you saw? I am in Toronto and I would like to see someone with experience in SCD.
Thanks for sharing.
Still looking for any info or assistance you can provide. I feel I'm at a stand still at least here in Canada. Could re-visit my Dr. in the U.S. but very costly as OHIP will not pay as I didn't have and couldn't get prior approval with no diagnosis or prognosis.
None in Toronto that was up on BSSCD - my Dr. was in London, Ont. His name is Dr. Lorne Parnes.