Upcoming surgery, 3 1/2 years since this began

Dr Futran is the perfect example of what we wish all physicians were like. I had the same experience several years ago. I called around and found out about him. My local ENT helped me prepare for finding a surgeon, he had given me all the prep tests to verify. I got in to see Dr. Futran within a couple of weeks. He did not give you the impression of being the top guy, even though he was the only one who did these surgeries. His office was very supportive. I had two surgeries, one side at a time. I have not had any problems. My problems had been going on for most of my life, they began in my teens and were fixed in my 60’s. Nobody would believe me; I also could not open my mouth very much for dental procedures. My local ENT was an angel and the only one who helped. He also helped me figure out other serious head issues. Blessings for a smooth recovery.

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Ladygw,

Thank you for coming back on the forum & making this encouraging post. It means a lot to our members who are still awaiting surgery to read positive comments from people who’ve had ES surgery some time ago.

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Thank you for the encouragement, lovely to hear that things have gone well for you, such a shame that you had symptoms for so long…

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LadyGW,

I am so happy that you found this and posted about Dr. Futran and your experience. :smiling_face_with_three_hearts:

I was hoping I would meet you. Your post was such a huge relief. I feel the exact same way about Dr. Futran! It is such a relief to know you felt the same way. I feel very comfortable with him.

I am getting very nervous about post op care. I know Dr. Futran understands the healing process, but the post op nurses don’t seem to understand what it entails.

I have a few questions, will post them under a new thread for post op care intraoral in a bit, but wanted to let you know it means so much that you are here!

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The spiky bone that was actually long and pointy. The camera wouldn’t focus on it. The picture distorts how far back the bone was.

Taken before my Tori removal/ spiky bone surgery. This is a terrible picture, but it is the best one Dr. Pehling (jaw specialist) could take. My tongue is huge. Ha, the arrow is supposed to be pointing at text “right side Tori” but it vanished.

The Tori on left side was at the same level as my teeth. Yikes! Glad it is gone.

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I also wanted to say, you having to live with ES for years and years, I thought I had it bad! No one believed me either, and I broke several times just in 3 years… thank you for showing your strength

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Make sure you link to my name, ok. Thank you for your kind comments. I have had several other serious medical issues which I figured out and did not stop until they were acknowledged. It is difficult, especially as I took care of myself. Cheers.

I take breaks from here because of ongoing medical problems… I think I was born so the doctors would have something to do!

A question on your fall. What was the distance, did you hit face first? Did you have any symptoms of a cerebral spinal fluid leak? Odd dripping from nose, headache which leaves when lying down, among others. You could also have aggravated your Atlas - top disc of the spinal column. That is a killer to deal with. After you surgery, keep an eye out for odd symptoms. Hearing your heartbeat constantly like it is right in your ear. This is not to cause you any trepidation, just to be aware.

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Hi Gwendolyn, I see you have not been on for several days and wonder if you had your surgery with Dr. Futran at UW as I live in the Seattle area. I attempted to get an appt with him but he was booked out and got one with another doc there however I already have had a CT done and reviewed by Dr. Samji and meet with him on the 4th. I have been seen at UW oral dept of medicine for my TMJ previously. I always intended to have Dr. Samji do any surgery because of the high praise everyone gives here of him. I had a hysterectomy 1 year ago at UW and it was the worst experience of my life and that’s with 18 surgeries behind me at various well regarded centers. I hope you tell me you had a better experience and that you are recovering nicely!

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@Snapple2020 @Ladygw @Isaiah_40_31

Hi everyone! I sincerely apologize for not being able to log on. Since early December, I have had insane pain (7/10) in my left ear. I was told at the ER it was due to a clogged Eustachian tube, with no infection. The pain was getting worse (9/10) until I could not do anything. I was just put on antibiotics and the pain is getting significantly better.

So… I have had to postpone my surgery. I met with my pain physician, who is now fully up to date. She is going to recommend that I stay at least 24 hours in the hospital for IV medication and hydration. I also need some general blood tests to make sure I am not lacking certain vitamins/magnesium. Scary tests: Rule out prediabetes, x-ray of my chest to rule out lung cancer :no_mouth: (I had walking pneumonia earlier this year, it was likely just fluid, but I have to make sure).

I am waiting to hear back re: calcification of any ligaments, if I have any, and if they will be removed. I did confirm that Dr. Futran does nerve testing.

Snapple,

I am glad you are meeting with Dr. Sanji. By any chance was the other surgeon Dr Albert L. Merati? I have had two doctors recommend him, but I know nothing about him. I am very comfortable with Dr. Futran. However, Dr. Sanji seems to be the most popular and highly reviewed surgeon on this forum!

My tonsils are huge so I must have them removed. Apparently intra Oral has improved, at least I hope so. I know my styloids will be fully removed back at the skull base.

I really do not know what to expect post op - tonsils and styloid together. I have been reading about tonsillectomy recovery, but I really do not know what to expect with intra oral styloid removal. Can I immediately drink fluids? I know from reading about tonsillectomies that swallowing is very painful, but you have to do it! I know hydration is probably the most important thing, along with consuming protein. Dairy is a huge no no. I have ice packs, wedge, v-shaped pillow, pill crusher. I asked for liquid pain medication and strong anti nausea meds.

Does styloid removal also involve scabbing? I was hoping @Ladygw could share her recovery story and tips. Is hemorrhaging a huge concern? Thank you! :pray:t3:

Quick Edit: Snapple, if your TMJ was not treated properly go elsewhere! The oral medicine department is in the ice ages. (The entire school of dentistry is very traditional. They had some problems in the past few years with quality of general dental care, but a new Dean has come in and restructured for the better) Traditional treatment is not necessarily a bad thing, but I have had much more success with progressive doctors.

LadyGw: I do not have the symptoms of Atlas issues, but it is good to know that could be something to explore. I am almost certain my left upper cheekbone has micro fractures, another thing to deal with after! (I also have a list of other medical issues)

:heart: :heart: :heart:

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@Ladygw Face first, fun fun. Well, left temple/upper cheekbone/eye orbit. Severe concussion. My old primary doctor told me the next day that I probably had a migraine. I rarely get migraines. So happy he is gone! I also posted more in my larger reply

WOW!

Thank you for the update, Gwendolyn! I’m sorry to hear that the road continues to be bumpy for you but glad that you’re getting resolution to the ear pain. It’s good that Dr. Futran is willing to do surgery when you’re ready & your questions & concerns have all been answered.

I know the facial injuries are residual from your fall. I hope there is no surgery required there, just more heal time required.

Please do let us know how the timeline plays out & when your ES surgery is scheduled. I’m so glad you have a doctor you feel confident in & who is compassionate & encouraging for you.

:heart:

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HI Gwen,
I can’t say about what to expect post op but I do know I had my tonsils out at around age 17 and it was extremely painful. They say the older you are, the more painful it can be. I had to stay overnight due to the pain. That being said, I can only advise strongly to make sure you have someone with you after surgery to advocate for pain meds at UW. After a 4.5 hour surgery, it took almost 3 hours to get ANY pain meds and only got one small oral dose. This is with clear instructions I only receive IV pain meds due to nausea and vomiting from anesthesia. It took another 2 hours before I got IV pain meds which quickly wore off as pain out of control. I had two pre-anesthesia visits that also documented genetic testing that opioids were needed at higher does to be effective. My records showed and I had a red wrist band I could not take NSAIDS, tylonal or aspirin yet was given it anyways. After several hours of arguing with nurses and demanding to see a patient advocate, stating I would file a complaint or speak to a supervisor about it all, suddenly I received a pain pump. This 7 hours after surgery. It was a nightmare and my kids told me once home I was waking up screaming in my sleep. Other medical professionals who reviewed my files suspect there was drug diversion going on and DEA has investigated. With the help of my senators, State of WA Dept of Health has opened up an investigation also as UW would not take responsibility for the lack of care while in PACU.
Thanks for info on the oral medicine dept as I have suspected that they were somewhat useless. When I asked them to review my tomography of jaw done in 2016 last month fro ES, Dr said they had not previously seen any indications of Eagles however he requested radiology review them again and low and behold I was sent some screen shots showing all the calcifications and elongated stylus. I spoke to Dr. Pehling office today in Seattle about a consult for TMJ. Bad thing is he doesnt take any insurance and all care has to be paid for up front and wait for reimbursement. ouch. $350 for consult. Ill eventually make it over to him but will wait when I can cough up the cash. I am seeing a doc in Tacoma who gives similiar injections and will stay with him for now.
I did request consult with Dr. Futran or Dr. Merati. Both are booked out and I have one with a Dr. Giliberto whom work with them. I may reschedule with the other docs or take this one for a 2nd opinion. Given I will never have surgery in that facility again, its only a second opinion. Amazing I can get in to see Dr.Samji in less than 30 days.
Good luck with all your pre-surgical work ups. I hope it all works out and I will be following along.

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@Snapple2020
What a terrible experience. Good for you for following up & challenging the system. Most people wouldn’t. I hope the investigation turns up whatever it needs to so the same issues don’t occur for future patients at UW.

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So sorry that you’ve had to postpone surgery…I hope that your infection clears up soon & you’re able to have surgery quickly. Thinking of you…

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Greetings fellow ES friends!

Off topic - I’ll check in a bit later- my father (75) is an avid cyclist. Yesterday he was out and crossed a bridge that still had ice on it and had an crashed :sob:. He had to wait ages for help, he called late last night. Hip fractured in 3 places and his shoulder/arm is badly off. I am bringing him some of the stuff I ordered for my surgery.

I have so much to say in response to everyone but want to be with him.

Snapple, I am completely shocked and furious at what happened. I can’t agree more with how well you advocated - first for yourself, and now for the sake of every patient. I think you have helped countless people. I will PM you

:heart:

P.S. Remind me to ask about toast! @Jules

@Snapple2020 @Ladygw @Isaiah_40_31

Snapple2020

    January 17

HI Gwen,
I can’t say about what to expect post op but I do know I had my tonsils out at around age 17 and it was extremely painful. They say the older you are, the more painful it can be. I had to stay overnight due to the pain. That being said, I can only advise strongly to make sure you have someone with you after surgery to advocate for pain meds at UW. After a 4.5 hour surgery, it took almost 3 hours to get ANY pain meds and only got one small oral dose. This is with clear instructions I only receive IV pain meds due to nausea and vomiting from anesthesia. It took another 2 hours before I got IV pain meds which quickly wore off as pain out of control. I had two pre-anesthesia visits that also documented genetic testing that opioids were needed at higher does to be effective. My records showed and I had a red wrist band I could not take NSAIDS, tylonal or aspirin yet was given it anyways. After several hours of arguing with nurses and demanding to see a patient advocate, stating I would file a complaint or speak to a supervisor about it all, suddenly I received a pain pump. This 7 hours after surgery. It was a nightmare and my kids told me once home I was waking up screaming in my sleep. Other medical professionals who reviewed my files suspect there was drug diversion going on and DEA has investigated. With the help of my senators, State of WA Dept of Health has opened up an investigation also as UW would not take responsibility for the lack of care while in PACU.
Thanks for info on the oral medicine dept as I have suspected that they were somewhat useless. When I asked them to review my tomography of jaw done in 2016 last month fro ES, Dr said they had not previously seen any indications of Eagles however he requested radiology review them again and low and behold I was sent some screen shots showing all the calcifications and elongated stylus. I spoke to Dr. Pehling office today in Seattle about a consult for TMJ. Bad thing is he doesnt take any insurance and all care has to be paid for up front and wait for reimbursement. ouch. $350 for consult. Ill eventually make it over to him but will wait when I can cough up the cash. I am seeing a doc in Tacoma who gives similiar injections and will stay with him for now.
I did request consult with Dr. Futran or Dr. Merati. Both are booked out and I have one with a Dr. Giliberto whom work with them. I may reschedule with the other docs or take this one for a 2nd opinion. Given I will never have surgery in that facility again, its only a second opinion. Amazing I can get in to see Dr.Samji in less than 30 days.
Good luck with all your pre-surgical work ups. I hope it all works out and I will be following along.

@Gwendolyn - I AM SO SORRY about what happened to your dad. So glad his situation wasn’t worse!

I’ve had a couple of bad cycling accidents so know how painful the consequences can be. How fantastic that you’re able to be with him & help him. I imagine he’ll be in the hospital for a bit before going home. I hope they take the best possible care of him. :heart:

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Sorry to hear about your Dad, sounds nasty, hope that he recovers well. Take care of yourself as well as your dad, hugs to you…

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Qwen,
So sorry to hear about your father. When it rains it pours. I hope he recovers ok an you can take care of yourself. He is lucky to have such a good daughter!!
UW surgery was a horrible experience and they didn’t realize I was a former patient advocate and executive director of a health-based non-profit and a background as paralegal when they tried to blow me off. Given they have a banner across the front of the hospital rated #1 in Washington State by US Health & News, I wont stop hammering on them for what they did to me or what they have most likely done to others. No doubt other patients have experienced the same. Ive come to realize I broke my own rule of not having someone physically present at all times when at a hospital and after surgery. You must always have someone present to advocate for you or you are at risk of poor care. If you need an advocate, Id be happy to be there and watch them in action and make sure you get the proper care.
In teaching hospitals such as UW, there is high turnover and that does not help. Ive surveyed others who have had surgery in the Seattle area at other centers such as Swedish and Virginia Mason with mixed reviews. I, as well as my children have had excellent care at Evergreen Hospital in Kirkland. I am seeing a trend of poorer care overall in past 5 years. I think there has been so much focus on opioid epidemic that the pendulum has swung too far and patients in post-op care not getting proper pain management out of fear of DEA. This is especially true with women and gynecological issues. The PACU and ICU is not the place to start withholding pain medications.Just my opinion. Don’t get me going…

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