@mekanX Thank you for sharing your experience! I had run across diamox for IIH when I was trying to figure out what might be causing my symptoms, but never tried it and I’m sorry you had such a bad experience! I appreciate what you said about the “flushing out” experience with blood thinners. I just started Brilinta and I imagine it will take my body and brain a little while to adjust. I’m also sorry you’re feeling like you’re in limbo. That does all sound quite exhausting, and I admire that you are remaining optistimistic for a solution.
I hope that you’ll be able to meet with a doctor soon and figure out how to best help you get better.
@Jules I’m glad that the first surgery went well enough that waiting a year was okay! It makes sense that doctors would want to wait several months between surgeries. It seems like these would be semi-major surgeries.
I catch myself getting anxious about how surgery/surgeries would interfere with my life within the next year or so, but then I think, my symptoms are getting worse and inferferring with my daily life as is. I’d also like to feel like I can function better rather than feel like I’m constantly drudging in the mud. So ultimately, it’d be a small sacrifice to feel better I think (and hope)!
I think, with vascular ES especially, that symptoms do tend to worsen with time, so it’s certainly worth considering surgery no matter the impact the surgeries have on your life, if you can have surgery before symptoms get horrendous then that’s better…if it’s affecting your quality of life now then it’s the right time to consider surgery imo, it’s unlikely the symptoms will go away on their own or become manageable, hopefully this will make the surgery decision easier
Hi @Kit_Cat. I’m sorry I haven’t responded sooner, but have not been on my computer much the last several days. I wanted to let you know that I am actually pretty happy about waiting to see how successful the first surgery is before going ahead and having the second side done. Thankfully my symptoms are not very debilitating at the moment, so it has been okay. Also, the symptoms that I do have continue to be on the side that was operated on and they have improved since the surgery. I do still have symptoms though so am hoping that they will continue to diminish. Anyway, I would love to avoid a second surgery if possible; however, it seems that most folks end up having surgery done on both sides if they have bilateral compression. After my first surgery I had pretty significant impairment of my left arm due to the spinal accessory nerve issue. I was unable to lift my arm, so couldn’t use my roller brush & hairdryer, also couldn’t put a clip in my hair without propping my arm up on the wall & was unable to get things down or lift things up from an overhead position. It also impacted getting dressed a little. I started PT and the nerve started healing, so I saw a lot of improvement by about October (about 4 months after surgery). I’m still not 100%; however, it is almost back to normal and I can do things without any assistance now. My neck is still pretty stiff and I can’t make quick head movements and have limited range of motion/flexibility. I keep doing the exercises from PT (although I was discharged in Nov.) so hopefully that will continue to get better. Some days I have head pressure but most days I do not. I still feel some pressure when bending over with my head lowered, so I generally avoid that when possible. I haven’t had to make any major adjustments to my life as of right now, other than I still sleep somewhat elevated using 2 pillows. I agree that it is SO helpful to have a community like this to share information with regarding all of the different issues that go along with ES. Please keep us posted as to how you are doing & feel free to ask any questions!
@vap - I’m really glad to hear how your recovery has progressed & to know that things are continuing to improve. The fact you’re being patient during recovery is so great! I know we’d all like to have instant results & wake up from surgery w/ our symptoms gone, but as you have experienced, that’s not the case.
Your patience will pay off, & I’ll pray for you not to need a second surgery. Just keep up that positive mindset even when there are setbacks because you can already see how far you’ve come. I also applaud you for being proactive in doing your PT exercises ongoing as that’s a positive step to help protect your recovery from regression & will continue to maintain strength in the areas you are working.
I also appreciate you coming back to encourage our newer members. Thank you!
Thank you @vap for sharing about your recovery experience! I’m glad to hear you feel things are moving in a positive direction, and it also sounds like it has been somewhat of a challenging recovery at times. I’m glad you feel that you have seen some improvement in symptoms though. I hope they will continue to diminish for you also! It honestly sounds a little scary going through all of that. Do you feel like you would have done anything different knowing what you do now?
Sorry, I had one more question! @vap Do you feel it is important to get a second opinion? I feel fortunate that I am getting to meet with Dr. Hepworth, but I also wonder if I am doing myself a disservice by not having another opinion.
Hi @Kit_Cat i don’t think that I really had any choice other than to have surgery. I investigated other options, such as Atlas Orthogonal chiropractic adjustment to see if there would be any non-surgical way of moving things around a little bit. However, there is nothing that would have untwisted the IJV and Spinal accessory nerve but the surgery. I had never had surgery before or even been in the hospital, except for having my children, so the whole idea of such a serious surgery was pretty overwhelming at first.
@Kit_Cat I do believe that having a second opinion is a good thing to do, just to get another surgeon’s perspective. I met with Dr. Hackman in NC first and he said that he would do the surgery. However, he doesn’t really do the IJV decompression & I knew that I was having that issue. I also consulted with an AO dr. in FL who went over the imaging in great detail & said that he believed that surgery was pretty much the only option for me bc of the IJV compression. I would likely have tried to consult with Dr. Hepworth bc he has so much experience but he is so much further away for me & I didn’t really want to have to fly home right after surgery. Also, the time frame for getting an appointment with him was much longer & his office was going through a transition. After meeting with Dr. C I felt comfortable that he knew how to handle my situation and NY was easier for me to get to for the various appointments. He also will do follow up telehealth appointments as long as there are no issues going on. If you want to get another opinion, you could contact a surgeon who does telehealth consultations and just see what that doc would recommend for treatment. I think Dr. Ryan Osborne in CA does telehealth consults.
@Kit_Cat - Dr. Nakaji in Scottsdale, AZ, is another of the vES doctors on our list. He’d also be a good option for a second opinion. He will require an in-person initial consult.
@Isaiah_40_31 I just checked out his website - thank you! It looks like he has experience in Chiari, so it certainly wouldn’t hurt to reach out. Thank you!
Hi @vap, thanks for your reply! I had also tried Atlas Orthogonal before I knew what was going on. I didn’t find it too helpful and actually ended up feeling a little worse after the appointments. I only gave it about 3 sessions though. Did you feel any relief from it? Kind of an interesting technique regardless! I imagine it was overwhelming considering the idea of such a serious surgery since it was your first one. However, having kids is also a big deal! Thanks for the information about getting a second opinion also. It’s rough that getting an appointment with many of these doctors takes quite awhile, but I also understand. I’m glad you found a doctor you felt comfortable with - that seems extremely important. I looked into Dr. Osborne a little bit, and I might go back and check him out a little more. If you don’t mind me asking since you mentioned kids, how was your recovery and taking care of your kids? I have a little one (just one), but that has been on my mind regarding recovery and taking care of her.
Hi @Kit_Cat Hope you’re having a good day! I only had one AO adjustment because the doc pretty much said that surgery was the only thing that was going to help with my situation. I didn’t really feel any different from the AO treatment but am thankful that I didn’t feel worse. I’m sorry that it didn’t work for you and made you feel worse. I have 3 kids; however, my youngest one is 16, so I didn’t have to care for them after my surgery. They are actually old enough to take care of me now & they did a great job! I think hat for the first week or so, you might want to have some help if your child is young. How old is your daughter I would say that for the first week after surgery you’ll want to be taking it pretty easy. Before my surgery the doc told me that I’d be able to go out to dinner and sightsee after a couple of days. There was no way that I would’ve been able to do that. Everyone is different though and I guess it depends on how complicated the surgery ends up being. I briefly looked into Dr. Osborne, but since he was so far away I didn’t pursue getting an appointment with him. Maybe you could send your scans to another doctor and do a telehealth consult. There are a good number of doctors mentioned on this forum; although there aren’t as many who do the vascular ES surgeries.
@Isaiah_40_31 Thanks for the encouragement and especially the prayers! This is a journey for sure & even when we have surgery, it’s not quite over & we’re not usually as good as new…I’m glad that we’re able to see improvements though. How are you doing since your surgery?
@vap - Thanks for asking. My surgery didn’t accomplish what I hoped which was some hearing restoration in my left ear, however, my expectations were low since the hearing loss began 9.5 years ago. Perhaps if I’d recognized it was caused by internal jugular vein compression sooner, & had that taken care of, my hearing would be better now. I’m ok, though, as I believe God always has a plan with things like this. I joke that I have a God ear & a good ear. The God ear can only hear Him.
Aside from that, at a recent follow-up appt. w/ Dr. Hepworth, I learned I may have a form of dehiscence due to loss of bone from an inner ear surgery in 2019. That bone loss is potentially what is causing my chronic, constant loud tinnitus in my left ear & the good news is that it may be able to be fixed by Dr. Gopen at UCLA. We’ve had other members who were diagnosed w/ SCDS which is the more common form of dehiscence syndrome so I’m hopeful. That won’t likely restore any hearing but at least it may quiet the constant noise in that ear. If I qualify for the dehiscence repair, it will be much later this year.
Hi Isaiah, I was wondering, what program did you use to edit the radiology imaging? The red and blue annotations are clean, and I would like to use this as well.
