Thursday, February 7, 2013
deterioration
I suppose the natural course of the disease is going to have it's way. My tinnitus has been bad for a while. Last week, I started having some mild vertigo symptoms. I got in to see Dr Stewart locally for a steroid injection but did not have the improvement in symptoms that I had with previous injections. I can tell that my hearing is worse lately. I'm playing with the adjustments on my HA more. Might be time to go in to have them adjusted again.
Still have some very mild vertigo symptoms. If I turn my head, sometimes it keeps turning for a second. Never had it so bad that I had nausea or was incapacitated. What is really annoying is the ringing. the constant ringing. I think if that went away, I would hear better. It really is the volume of ringing that keeps me from hearing things under that volume.
Hearing test this week. It's been almost a year since the last one. Fearful of what it will show.
Stable?
Had the audi and dr visit today. The diagram is pretty much the same as a year ago-within 5db. Discussed with Dr Stewart that the vertigo symptoms I was having led me to call for an injection and those are better. The tinnitus is constant and fluctuates in volume. The ringing is the worst hindrance to hearing. When it is loud, I have trouble hearing speech under it.
So, things seem to be stable objectively. Dr did restate that the long term course of this disease is continued hearing loss and they have no way to stop that. Oh well. At least, it's not cancer.
Monday, October 1, 2012
Temporary results
The success I had with the steroid injection has nearly completely worn off. Tinnitus is back & constant. Worse is that the hearing in my left ear is diminished again. Not quite as bad as before but certainly down. The hearing aids work to compensate. Don't know if I can have another injection or if its even worth it for the temporary improvement.
Sunday, September 16, 2012
Dr Gopen UCLA & Success w Steroids
Getting to the UCLA medical campus is an adventure all by itself. Crowded freeways and streets. Garmin got us to the building.
Dr Gopen met with us for 20 mins, I guess. I didn't keep track but I talked a long time of where I have been since first developing tinnitus, Dr Hegarty and the ENT I tried in SLO. He discussed Meniere's disease at length, giving more detail than Dr Hegarty did. Subgroups, new imaging revealing new anatomy that is insignificant in actual treatment of people and he discussed my audiogram in detail that Dr H never did. Overall, he didn't have anything new to offer me and besides much more detail, he didn't tell me anything I didn't know. Meniere's is a mystery, treatment is a guess and when I am dead, my temporal bone can be donated for research.
He offered the steroid injection and I said yes. It was what I came all that way for. That sucker hurt more than when Dr H did it. I believe he put an extra volume in. I never tasted it when Dr H did it, either. I laid there with the ear up for thirty minutes and then walked out. Just like that. He had already moved onto his next patient. He gave me his card with an email and said that if I wanted another injection, to email and he would squeeze me into his clinic.
By that evening, I had a large improvement in my hearing and turned off my aid. I didn't notice until after that the tinnitus was gone. So, apparently, I am in that subgroup he talked about that responds to steroids. Lucky me!
Being in San Diego and visiting, we ate out a lot. I know I had some meals that went way over my salt allowance. I took double diuretics and flushed with a gallon of bottled water. The tinnitus is back at a low volume 36 hrs after the injection but I think the hearing is still good. No hearing aids all day. I turned them on for a bit today and it was just too loud.
I'm going to contact the SLO ENT one more time and see if he or one the partners will reconsider doing the injection here in SLO and save me the drive to LA.
Dr Gopen met with us for 20 mins, I guess. I didn't keep track but I talked a long time of where I have been since first developing tinnitus, Dr Hegarty and the ENT I tried in SLO. He discussed Meniere's disease at length, giving more detail than Dr Hegarty did. Subgroups, new imaging revealing new anatomy that is insignificant in actual treatment of people and he discussed my audiogram in detail that Dr H never did. Overall, he didn't have anything new to offer me and besides much more detail, he didn't tell me anything I didn't know. Meniere's is a mystery, treatment is a guess and when I am dead, my temporal bone can be donated for research.
He offered the steroid injection and I said yes. It was what I came all that way for. That sucker hurt more than when Dr H did it. I believe he put an extra volume in. I never tasted it when Dr H did it, either. I laid there with the ear up for thirty minutes and then walked out. Just like that. He had already moved onto his next patient. He gave me his card with an email and said that if I wanted another injection, to email and he would squeeze me into his clinic.
By that evening, I had a large improvement in my hearing and turned off my aid. I didn't notice until after that the tinnitus was gone. So, apparently, I am in that subgroup he talked about that responds to steroids. Lucky me!
Being in San Diego and visiting, we ate out a lot. I know I had some meals that went way over my salt allowance. I took double diuretics and flushed with a gallon of bottled water. The tinnitus is back at a low volume 36 hrs after the injection but I think the hearing is still good. No hearing aids all day. I turned them on for a bit today and it was just too loud.
I'm going to contact the SLO ENT one more time and see if he or one the partners will reconsider doing the injection here in SLO and save me the drive to LA.
Friday, August 24, 2012
UCLA is a long way away
My insurance plan authorized me to see a Neurotologist at UCLA. I looked up Dr Gopen, both his website at UCLA and on Healthgrades. He gets high marks. A young guy who somewhat resembles Dr Hegarty. This will probably be ok but it is nearly 4 hrs away. I have a 9am appt so I will either have to get up really early or drive down the night before. My hearing has been down. I had a little improvement with the steroid blast/taper but the last couple of days have been poor. I went to Costco to get my HA adjusted. Added a program with just a little more volume. I'm having trouble hearing a few people at work. This is frustrating.
Tuesday, August 14, 2012
Dr Sajjjadi-Neurotologist
From: Hamed Sajjadi [mailto:drsajjadi@earandsinus.
Sent: Saturday, August 04, 2012 5:50 PM
To: Muratet, Alan - AGCH
Sent: Saturday, August 04, 2012 5:50 PM
To: Muratet, Alan - AGCH
Cc: Leslie Gutierrez; Vanessa Castro; Azar Sajjadi; Ali Sajjadi
Subject: Re: Urgent
Subject: Re: Urgent
Dear Alan,
I'm a Board Certified Neurotologist with special interest in Meniere's Disease and over 20 years of experience. I do give Intratympanic high dose steroid perfusion for Meniere's Disease. Our office is located in San Jose, near the city of Los Gatos. You could call our office and make an urgent appointment to see me this week.
However, as you may have been told in the past, there is no guarantee that steroid perfusion will restore hearing in Meniere's patients. I offer this method frequently to our patients, but data on it's efficacy is not conclusive and experts differ on it's value. Even though it seemed to have helped you in the past, it may not work for you this time around.
Meniere's disease is a very unpredictable disease, with natural fluctuations in hearing. Often times, one treatment or another may "coincide" with a hearing gain or drop, even though it may not have been a cause and effect relationship.
Having said that, you could receive ITT Dexamethasone at my office this week if needed. You would have to do the following:
1. Call 408-358-8507, after 9 am on Monday and ask for an urgent appointment with Dr. Sajjadi
2. Bring all your old records dealing with Meniere's Disease, i.e., any Hearing tests, CT or MRI's, ENT/Otologist office notes, etc.
3. Purchase high concentration Dexamethasone at our compound pharmacy, Silicon Valley Pharmacy on Winchester Ave, in Los Gatos. The pharmacy would charge you about $200 for a multidose vial, which would be good for at least 6 injections.
4. If you have no insurance, then be prepared to pay cash for the office visit and any perfusion sessions.Please discuss the cash price with my office when you call on Monday. You would need to ask the cost of a new patient Consultation, Audiogram and Middle ear perfusion. The first visit would take you 2.5 hours. Follow up visits are shorter and less expensive. Each follow up perfusion session lasts 45" or more.
I hope this information helps. Please let us know what we can do to help you.
Best wishes,
Hamed Sajjadi, MD, FACS
Clinical Associate Professor,
Otology / Neurotology - Skull Base Surgery
Stanford University School of Medicine
President, San Jose Ear & Sinus Medical Center
408-358-8507
Fax: 408-358-8506
hsajjadi@ohns.stanford.edu
www.earandsinus.com
I'm a Board Certified Neurotologist with special interest in Meniere's Disease and over 20 years of experience. I do give Intratympanic high dose steroid perfusion for Meniere's Disease. Our office is located in San Jose, near the city of Los Gatos. You could call our office and make an urgent appointment to see me this week.
However, as you may have been told in the past, there is no guarantee that steroid perfusion will restore hearing in Meniere's patients. I offer this method frequently to our patients, but data on it's efficacy is not conclusive and experts differ on it's value. Even though it seemed to have helped you in the past, it may not work for you this time around.
Meniere's disease is a very unpredictable disease, with natural fluctuations in hearing. Often times, one treatment or another may "coincide" with a hearing gain or drop, even though it may not have been a cause and effect relationship.
Having said that, you could receive ITT Dexamethasone at my office this week if needed. You would have to do the following:
1. Call 408-358-8507, after 9 am on Monday and ask for an urgent appointment with Dr. Sajjadi
2. Bring all your old records dealing with Meniere's Disease, i.e., any Hearing tests, CT or MRI's, ENT/Otologist office notes, etc.
3. Purchase high concentration Dexamethasone at our compound pharmacy, Silicon Valley Pharmacy on Winchester Ave, in Los Gatos. The pharmacy would charge you about $200 for a multidose vial, which would be good for at least 6 injections.
4. If you have no insurance, then be prepared to pay cash for the office visit and any perfusion sessions.Please discuss the cash price with my office when you call on Monday. You would need to ask the cost of a new patient Consultation, Audiogram and Middle ear perfusion. The first visit would take you 2.5 hours. Follow up visits are shorter and less expensive. Each follow up perfusion session lasts 45" or more.
I hope this information helps. Please let us know what we can do to help you.
Best wishes,
Hamed Sajjadi, MD, FACS
Clinical Associate Professor,
Otology / Neurotology - Skull Base Surgery
Stanford University School of Medicine
President, San Jose Ear & Sinus Medical Center
408-358-8507
Fax: 408-358-8506
hsajjadi@ohns.stanford.edu
www.earandsinus.com
On Fri, Aug 3, 2012 at 2:46 PM, Muratet, Alan - AGCH <Alan.Muratet@dignityhealth.
I am recently relocated to the San Luis Obispo area. I have had intratymp injections of dexamethasone from my former Neurotologist
and I had improvement in my hearing. I saw a local ENT on my insurance
this week and my audiogram is way down from the last time. The
physician I saw does not do IT injections and I have not been able to
find one in the area or on my health plan that does.
I
was receiving great care and preserved my hearing up to this point. I
am only 52 and still need to be able to hear. I called my former
physician in Colorado and he agreed to order a Prednisone blast/taper
over the phone. He has had me on Diamox and Lasix for 6 months.
Can you provide IT steroids and care for my Menieres? I am willing to be a cash pt initially.
Please
get back to me as soon as possible. I fear that if my Menieres is left
untreated, I will certainly go deaf in that ear.
Alan Muratet
RN, Clinical Documentation Specialist
Arroyo Grande Community HospitalDr Stewart
Went to seean ENT on my health plan. I had my doubts going in. Dr Stewart said plainly on his website that his interest was neck surgery. I called every ENT doc on the central coast, including some that were not on my health plan, to verify if they offered the services I was receiving from Dr Hegarty. None of them did. But, I gave my insurance plan a shot.
Dr Stewart didn't even look at my audio until I brought it up near the end of the visit. He had his agenda and it didn't include treating me with an aggressive bent towards preserving what function I had. In fact, he suggested we go ahead and do the Gent injection to kill the ear. He focused on my least problematic symptom, the vertigo. He said that IT steroid injections are not proven to work (inconclusive results
on that one. It did work for me so that is 100% success rate).
Dr Stewart didn't even look at my audio until I brought it up near the end of the visit. He had his agenda and it didn't include treating me with an aggressive bent towards preserving what function I had. In fact, he suggested we go ahead and do the Gent injection to kill the ear. He focused on my least problematic symptom, the vertigo. He said that IT steroid injections are not proven to work (inconclusive results
on that one. It did work for me so that is 100% success rate).
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