Congrats on the new home!
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Thank you! We now have a view of a mountain from our back windows. It’s COLD here, but oh so beautiful!!
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Hi @stuuke. I am a patient of Dr. Hepworth’s, as well. I am interested in the Dr. Maxwell pdf presentation that Dr. H sent to you. I think I can send you me email address in a private message if you still have the pdf and are willing to send.
Also, Dr. H prescribed Pentoxifylline to me, as well. I am taking my first dose tonight and am wondering what side effects you experienced from this med.
Labs were put in my chart this week, as well as a MCAS diagnosis, but I haven’t had any labs done. I sent him a portal message. Waiting on response. I wouldn’t be surprised if I do have MCAS, but it’s totally WEIRD that there are labs listed in there, from Denver Quest, that I’ve never been to or had done. @Isaiah_40_31 , do you think I should text him to please read my message in the portal?
Thank you both!
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@Ladymaestro1 - I’m sorry to hear about the postings in your patient portal that are incorrect. That’s not the first time that’s happened with his office. I do think you should text him about that. I was billed for a procedure I didn’t have when he was still with Veros, but now that he’s in private practice, those things shouldn’t still be happening.
When I had my telehealth appt in Jan, the ofc had both my email & cell # wrong (mind you it was a post op appt), & I wasted valuable minutes of my appt trying to get a zoom link. In the end, I texted Dr Hepworth, & we had a cell phone consult instead. I filled out all my new patient info online, so I’m not sure how the cell & email address info could have been wrong unless it was hand-typed erroneously into my chart later by someone in the ofc.
The MCAS diagnosis is likely not yours (at least not yet) if it’s associated with the labs that aren’t yours.
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It looks like the file is too large for me to post in the forum. I’m happy to send it through email or can send it to a mod to post if that’s easier.
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@Isaiah_40_31 Actually, Nicole reached out today via email. What was in my chart are lab orders (wasn’t apparent) and he DXed me with suspected MCAS in order to go get them. I’ll get them done next week. I’m glad it wasn’t someone else’s labs! 
Stephenie reached out yesterday and my L side surgery is scheduled for September. She put me on the cancellation list to try for sooner. Praying! 
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@stuuke Thank you! I just sent you a private message with my email address.
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WHEW!! I’m so glad it wasn’t a mistake, @Ladymaestro1!!
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That’s good you got some clarification, & pleased that you’re on the list for surgery, hopefully you can get in sooner
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Not much to report. I tried both medicines Dr. Hepworth wanted me to try and they did nothing. I’m not sure what else he will do or if it’s worth continuing with him. I was able to schedule an appointment with Dr. Cha in Minnesota for August. She’ll have me do imaging and then meet with me. I’ll have to stick around a couple of days to do a lidocaine injection due to insurance and if that works out they will do Botox treatments.
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Grumble…I’m sorry Dr. Hepworth isn’t being more proactive in your case, @stuuke. I don’t get it! I’ve been taking Pentoxifylline for a month (2 mos to go) w/ no change in my tinnitus. I think the only thing that will fix it is another surgery which Dr. Hepworth doesn’t do. I have a follow-up telehealth w/ him in late June. I’ll see where that takes me.
I sure hope Dr. Cha has some insight into the cause of your current symptoms & that the lidocaine injection & subsequent botox calm everything down.
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I’m sorry that you’re not getting anywhere & that the medication didn’t help, I hope that Dr Cha can offer some insight…please let us know how you get on…
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I’ve had a pretty nasty flareup of symptoms the past couple of weeks. I’ve had heart rate warnings in the past for low heart rate but last week I had 5-6 a day. I felt heavy fatigue and everything I did took a great deal of concentration no matter how simple it was. The worst part is I don’t really know what can be done about it. As scary as it is having heart warnings on your watch at my age if I go to the ER they will just check and make sure I’m not in immediate danger and send me on my way, with a hefty bill. If I go to my Primary he’ll just refer me to a specialist and most likely a cardiologist and I’ll have to wait months to get in. I can try to contact Dr. Hepworth but we know how that goes. I was in the most pain I’ve been in last year and didn’t respond to pleas for help. I am athletic so a lower heart rate is expected but I’m not elite or anything close to an athlete that would have a heart rate in the 30s. My dad had a low heart rate but unfortunately he’s no longer alive so I’m not able to get details about his condition or how it was treated. I really feel like this still goes back to my neck and the SCM tightening around the jugular causing high pressure low heart rate.
@stuuke - Have you considered seeing Dr. Nakaji or Dr. Costantino? If it’s your SCM causing problems, both of them have been known during IJV decompression surgery to pare down the SCM a little if it’s impacting the IJV. There may be other soft tissues involved as well - scar tissue from your first surgery for example. I really think you’d benefit from getting an opinion from another doctor at this point.
•Dr. Peter Nakaji, https://www.scottsdaleclinic.com
Scottsdale Neurosurgery Specialists - 602-313-7772
•Dr Peter Costantino, 4 Westchester Park Dr, 4th floor, White Plains, (914) 517-8056
http://www.nyhni.org/find-a-physician/Peter-D-Costantino-MD,FACS
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Thanks! I’m not sure there’s much more Dr. Hepworth can do or if he’s even interested in helping me. I’m hoping Dr. Cha has more input but it wouldn’t hurt to get started with another option as long as it takes to see these doctors. I’ve heard of Costantino on these boards and through YouTube seminars but I don’t think I know Dr. Nakaji.
I forgot you were planning to see Dr. Cha. Are you still awaiting your appt. w/ her?
It might be worth seeing your PCP for a referral to cardiology if you get more episodes- I don’t know if there would be a bit of a risk of clots if your IJV is still compressed & then a slow heart rate as well? There are medications which can help if you do have prolonged bouts… 
I’m seeing Dr. Cha in August. I’m hoping they can get me in sooner.
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So a few updates. I’ve done a few laser treatments and atlas adjustments. Neither got me out of this recent flare-up. I also tried shockwave therapy and have done about 4 treatments with that. So far no results. My primary had me wear a heart monitor for three days and the results came back abnormal. I see a cardiologist at the end of the month. I turned off my heart rate feature on my watch because the alarms were giving me too much anxiety and there’s really nothing I can do about it now. Hopefully it’s related to my neck issues and not another major health issue.
I had a Telehealth appointment with Allison at Dr. Hepworth’s office. She had me try Dexamethasone and Methazolamide. I didn’t notice any improvement with either. She is also going to have me tested for Mast Cell. I’m not sure why they didn’t do that before but it will be nice to confirm one way or another since that seems to be the area that Dr. Hepworth is focused on. She didn’t believe that instability is my issue due to my DMX and upright MRI measurements and suggested holding off on the Dr. Centeno for now. I still had everything sent to him so it’s ready to go if I decide to pursue that route. She felt seeing Dr. Cha would be a good next step and scheduled a follow-up with Dr. Hepworth for October.
Watching Dr. Cha is really getting my hopes up. I don’t want to get too hopeful based on all of my experiences so far but she just seems really impressive and seems to be focused on the issues that I’m dealing with. You can watch a great video of her discussing her treatments here
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I’m glad that you’ve finally had contact with Dr Hepworth’s office & a plan for going forward & other things to look into…A shame that the other treatments haven’t helped, and hope too that you’re heart abnormality isn’t something major, vagus nerve or carotid bulb irritation can cause heart arrythmias…Thinking of you & please keep letting us know how things go
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