Goodness, you have alot on your plate! Glad the surgery has gone well for your other daughter, & look forward to hearing how your appointment goes with Dr Hepworth’s team on the 9th 
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@Rosa! I’m so glad you were able to get an appointment w/ Dr. Hepworth’s nurse (Sarah or Alison?) for your daughter so soon (or perhaps you’ve waited a while for that?). If you haven’t made an appt. w/ Dr. Hepworth yet, do it while you’re in the office on 1/9. That way you’ll finally get to see him, even if it’s a ways off.
I’m glad your daughter’s TC release went well, & her recovery is progressing w/o complications. That’s great news! I’m sorry she has so many physical challenges as such a young age. Hopefully bit by bit they can each be resolved so she can live more fully. 
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This appointment is with Alison. I wonder if anyone knows what to expect from a nurse visit. Will she be able to look at the CTA and point out the trouble spots? Is she able to make recommendations or give medical advice? I am for sure hoping she can give information as to what all scans the dr may still need, including the codes, so we can move forward.
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Hopefully others with experience of seeing her will chip in, but from what I’ve read on the forum, Dr Hepworth’s NP is extremely knowledgeable & will be able to talk you through your daughter’s CT, & will be able to suggest other testing.
@Rosa - Alison has worked for Dr. Hepworth for 15-16 years & is very knowledgeable about reading CT imaging. She also significantly assists in his surgeries. She should be very helpful & informative for you & your daughter. I can’t speak to whether she can give you the diagnosis/medical codes, but she will be able to advise & refer you if there are other scans your daughter needs.
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Oh! That is even more than we hoped for! Thanks for the reassurance, this is all so new. Now we will for sure be counting the days… We are really appreciating this forum with its information and support. Thanks to all!
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@Rosa thinking of you this week as the days count down to the 9th!! You sure had a long wait but we hope with you that you have a real good visit!
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Thank you! And thanks for adding us onto this thread! I’m struggling to get time to figure this whole thing out and this way the info comes right to our door! I have learned valuable things from this conversation. I hope you hear soon, about an exact surgery date. Waiting can get long, even when we know the dr is moving as fast as he can. I hope I have half an idea what all I should be asking!
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I finally reached out to Kristen and this afternoon heard from her that it may be a few weeks until we hear from the surgery coordinator as they work thru the orders consecutively… so more waiting ahead!
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Hello everyone! I’ve been so busy with my family of hEDS patients, I’ve not spent much time on here. You will never guess where I am! In surgery waiting room, waiting while Dr Hepworth does surgery on my daughter! God provided a canceled surgery date, so her date was moved to today from August 26. We were allowed to keep the August date, to do the other side. We will see how all that pans out. I will try update on post op recovery. I am still in a mental upheaval as to whether this was really a wise choice or not…too late to change it now!
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@Rosa - God is so good! I’m glad your daughter’s surgery was moved up so much!! I will be praying for your daughter’s surgery to make a huge difference in how she feels. @BuckeyePrincess’s daughter had a slow start to recovery after her surgery but is feeling significantly better now.
If you haven’t seen her post, you can read it below. It will give you & your daughter hope. 
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Great that she’s having surgery now rather than waiting til August, will pray for good results and recovery, hugs to you both
Hi, I’m back with an update post op one week. We’ve had a rather rough start. I am not sure if it’s due to the high elevation here in CO, or the extra anesthesia she got to pull her through twice the expected surgery time. We’re dealing with very hard to control dizziness and nausea…even when on several meds. We had a nurse come out to the house to give a bag of iv fluid several days ago, and are currently getting another today. It did seem to really help, the first time around. NP was happy with everything else, though. She called in some more scripts and ordered blood work for when we get home, to try sniff out the reason for the continuing dizziness and nausea. She suggested we wean off the narcotics, to see if that decreases the dizziness and nausea. Not sure how that will work.
We will continue feeling our way through this, a day at a time. On the positive note- Our daughter has noticed a lot less night sweating and less chest heaviness. When I help her change her socks, her feet are dry and pink, instead of wet and white or purple. All of this is so encouraging and we hope it lasts! Surely, we should see at least mild improvement if her IJV went from the size of a coffee stirrer to the size of Dr Hepworth’s index finger!!! Seriously! I have pics to prove it! She had scar tissue wrapped around the IJV from C0 to C3. He contributed that to all her Strep infections as a child. The styloid process was about 6cm and hinged partway down. The lower portion was attached to her jaw bone, and moved with it when she chewed, talked ect…Her C1 is tucked underneath her skull, further than usual, helping to pinch the IJV with its transverse process. He shaved that to make more room. It seems maybe that shift could be a result of the whiplash she had along with her sledding accident a few yrs ago. The NP assured us today, that they will stick with us until we have her feeling better. They are willing to order more imaging of her inner ear if necessary. She explained that IIH for a long time can wear away the small bones in the inner ear and cause a dizzy sensation. Oh, if we could get rid of this ongoing dizziness, we would be so grateful!!! They noticed that her skull bones are worn thin in places, opening her up for CSF leak. This may be something we will need to address eventually. For now, the plan is to repeat a jugular ultrasound at six weeks to determine if she needs a styloidectomy on the left. We are keeping her previous surgery date in august for the second surgery if it’s necessary. O, if only that left sided blood would find its way across to the newly opened drainage route! Then we could skip a second styloidectomy!
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@Rosa - We’ve had other members who suffered severe side effects such as your daughter’s from narcotic pain meds post op. Those subsided once the meds were stopped & replaced by Extra Strength Tylenol/Acetaminophen &/or Advil/Ibuprofen which can be alternated every couple of hours, I believe (ask Dr. Hepworth’s NP about this). I hope it’s the pain meds causing her nausea & dizziness & replacing those w/ OTC pain meds will make all the difference for you plus save her from the need for additional testing.
The bone thinning in her inner ear, which can cause dizziness, you referred to is Superior Semicircular Canal Dehiscence Syndrome also known as SCDS. Dr. Gopen at UCLA Med Ctr specializes in surgery for that & Dr. Hepworth will refer you to him if your daughter’s imaging shows evidence of that.
I’m glad the surgery is behind her but am sorry it took a lot longer than expected. At least Dr. Hepworth was very thorough, & you now have pictorial evidence of a successful IJV decompression. I will pray for your daughter to stop having the nausea/vomiting & to begin noticing greater improvements. It’s great news about the recovery you’ve already noticed in her feet!
I’m sending both of you a healing
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I’m glad that your daughter is safely through surgery, and that it sounds like her IJV was decompressed well…I’m sorry though she has the dizziness & nausea, I guess it’s too early to tell if it is maybe SCDS, that would be something to look into maybe later as @Isaiah_40_31 says… I think if I remember right, @BuckeyePrincess 's daughter felt pretty rough like this after her surgery, but things have improved, hopefully she can encourage you… praying that this improves, sending you both hugs
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Good evening! Just to update you…our daughter has pulled out of that dizzy from anesthesia faze. I’m sure that’s what it was. I got a nurse to come out and give a bag of fluids on day five. That helped a lot. What dug her out the rest of the way was the 1500 ml of fluids on day eight ( and God’s healing hand). After that, she used very little zophran, whereas before she was on full dosage of that plus phenergan and mecklazine. Now, tomorrow, we hope to fly home! I know it will not be a fun trip for her and will really set her back. I also remember how much better everything goes at your own home, so I think it should be worth the effort. I am so excited to see my husband and other children again. If it’s not asking too much, you can pray for a smooth flight! Thank you!
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That’s really good news, I’m so pleased for her! Praying the journey is better than you think
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@Rosa - You may be home by now, but in case you’re not, I’m saying a prayer now for a smooth, safe trip for both of you. 
I’m glad your daughter is doing significantly better now.
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