Got it. Those aspects were important even before “computers took over the world”. 
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The cons cited against virtual meetings and telehealth are incredibly ableist. They also disregard a host of other social, geographic, environmental, and economic arguments in favor of virtual meetings. Certainly, there are times when meeting in person has its advantages, but to deny a patient the option to schedule a virtual consultation (and for reasons that pale in comparison to making healthcare accessible) is really imprudent.
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Hi @JustBreathe, I’m getting ready to start Brilinta. Thanks for mentioning it could get temporarily worse before better. Do you have an idea how to distinguish from side effects of med vs temporary worsening before it gets better? Thanks!
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Good question! It can be difficult but I would think an increase of YOUR symptoms vs the listed side effect would be a good place to start. This is a good website I use to research medications:
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That makes sense! I’ll keep a close watch on both. Thanks @JustBreathe and thank you for the website too!
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From what I have seen on his page and after meeting with him he is working with the ES Dr.s after revisions that don’t resolve problems.His expertise is stenting. He is very cautious and discerning about if stenting is an option. He felt my husbands location of blockages were not safe and would not do it.
He has numerous publications and a book on intercranial hypertension. The book is written for patients and families to understand in easier terminology. After 3 years on this journey we have realized it takes different Dr.s for different areas that need help. Sometimes it’s not as cut and dried as just styloid removal.
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Hi @Samom.4 - I’m so sorry your husband is still suffering. What started as a seemingly “simple” diagnosis of ES has certainly progressed to a deeper level. I hope & pray there is something that can be done to help him recover to a great extent so he (& you) can enjoy life together again. 
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have wondered the same thing too! does baclofen help your symptoms?
thank you just breath so much for sharing this
thank you everyone for sharing experiences, thoughts, questions etc I wish I could reply/ type more but vision cognition is so poor… just wanted to say thank you xx helps so much not to feel alone with all this xx
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I’m sorry your symptoms are so debilitating & certainly hope it’s not long before the ES part of your journey can be taken care of. I’ve forgotten if you have found a doctor to help you & if so, do you have a surgery date?
The spinal fusion you had is pretty massive. How tough for you that it didn’t help more.
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Dear Isaiah it is so kind of you to write this and ask after me, you are so supportive of everyone. I just want to write how much my fusion and traction did help me incase anyone was thinking they have instability as part of the complex picture with ES etc too. It saved my life. I had begun choking, stopped digesting food properly, having multiple seizures daily for hours, lost my voice on occasions, couldnt sit upright even in be, had low oxygen sats, episodes of blue lips and pauses in breathing and constant syncope, body wide spasticity and let alone the pain of it all! Unfortunately I didn’t know I also had a tethered cord so I’ve spent last 3 years trying to get that sorted. Has put all the ES stuff on hold. But as far Mr.T won’t help me as im Dr.Giletes patient. Dr.G thinks I have IIH & poss nutcracker syndrome. I haven’t had any tests yet apart from opthamology tests that indicate IIH. Im due to see Prof.Matharu neuro at Queens soon.
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Thank you for correcting my misunderstanding, @LivvySheep! So interesting to learn the good a spinal fusion can do. I am sorry for the problems you have that remain, however, & hope that one by one you can find doctors with the skill to help relieve your symptoms.
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No not at all, im not always great at being able to type and explain things in the way I mean due to brain fog, so no worries its me not explaining myself properly!! Thank you for your continued support over the years and always trying to help everyone. And Jules too.
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You’re most welcome! I’m so glad we’ve been helpful & supportive for you!
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Headed to see Dr. Fargen next week. Initial visit on Friday and then LP and venogram on Monday.
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@stuuke That is fantastic news!!! Sending you with all of the good I can muster!!
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Where is Dr. Fargen located?
Wake Forest in NC. Hoping he finds something. Unfortunately it sounds like insurance won’t let me get a shunt put in during my venogram so if they do find that is the next step I’ll have to schedule and go back. If Dr. Fargen doesn’t work out I’ll probably look at Dr. Hui. After that I’m not sure what the next step is.
Hoping it goes well for you, let us know how you get on 
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