So things have been finalized and we are traveling to Barrow Neurological Institute in Phoenix next weekend. My angiogram with Dr. Albuquerque is Aug 29th, then I have sugery consults with Dr. Lawton and Dr. Santarelli on the 30th, and if all goes as planned, my surgery will be the 31st by those 2 doctors! I will post updates here as things progress, whenever I am able!
Any advice for all of this is welcome!
Please pray that they find everything there is to find in my angiogram and nothing at all is missed. Also, please pray for my surgery and recovery to go well without any complications. Thank you! 🩷
I added your dates to my calendar so I can pray for you specifically around then. I’m really happy that Dr. Lawton is willing to see you & do your surgery, @BlacknBlueSaint. I look forward to your updates & especially once you’ve had surgery.
I’m also thankful to know the details worked out so your trip to AZ is possible.
That’s great! I’ll be praying for you too
Have you read post-op recovery stories to prepare for the angiogram & your surgery? There’s info in the Newbies Guide Section if you haven’t, and a link to the surgery shopping list of suggested items to get ready. There’ll be ups & downs with recovery, so don’t panic if things don’t seem much improved straight away…
Best wishes on the angiogram today
I hope all goes smoothly and answers can be found
I like to focus on breathing while I am waiting for the test in threw the nose out threw the mouth nice and easy
Replying a little late here, but I hope all went well & the results confirm Dr. Lawton’s & your suspicions about vascular compression. We’re definitely interested in seeing your results & in hearing what Dr. Lawton had to say about them.
Well, they canceled my surgery after we got the angiogram results. They said I still have excellent blood flow even with the many issues they can see on the CT scan, so even if they did the surgery it wouldn’t improve my blood flow in a way that would majorly change things or help me feel better. They said at this point it has to be a nerve problem since we’ve ruled out any vascular involvement. They ended up doing a nerve block as a diagnostic and if it helps they’ll do an ablation. We will stay here for another week and then see the nerve block doctor again to see what the next steps are. I’m trying really hard not to be discouraged. No improvement at all yet from the block.
Dr. Lawton was very nice and seemed surprised that my blood flow was so good. He said he expected to do the surgery based on how it looks on the CT but the blood flow and the amount of time it took to get through my vessels was perfect. Yes, that’s good news, but still doesn’t help me at the moment.
I understand that it can be discouraging but finding out you have good venous flow isn’t just good news because of ruling it out for pain, it’s a vital component for the long term health of the brain and knowing that you don’t have to worry about that right now should give you reassurance.
I am in a similar situation (I’ll be posting soon) where my vascular symptoms have resolved, my CTV looks amazing compared to before but it not perfect.
If you find a really good pain neurologist I am confident you will be able to find a treatment plan that will at least give you some sort of relief. I just got Botox in my masseters after over a year of pain post surgery and I’m finally seeing relief I haven’t had in over a year.
Continue to advocate for yourself and try your best to be open to treatment options, there’s so many to try but sometimes it takes a lot of trial and error before you fjnd the right balance of pain reduction and tolerable side effects.
@BlacknBlueSaint - I’m sorry to be skeptical but if your CT results show severe vascular outflow obstruction (i.e. styloids/C-1 or other compression of your IJVs or ICAs), but your venogram doesn’t show flow restriction, something doesn’t add up to me. Was the testing you just had done dynamically? Would you be willing to get a second opinion from Dr. Hepworth or Dr. Costantino (who does telehealth consults)?
Also, if your styloids are elongated &/or your stylohyoid ligaments calcified, & those are not removed, nerve pain will be the consequence because of the cranial nerves in that area being irritated by the styloids/s-ligaments. Nerve ablation is a pretty drastic measure & isn’t permanent. Nerves tend to regrow over a year or two so that’s not a permanent fix. Getting your styloids removed is the best solution. Since Dr. Lawton doesn’t seem willing to pursue that, you might want to contact Dr. Milligan who’s also in Phoenix. He’s done several hundred ES surgeries, & we’ve heard really good things about him.
•Dr John Milligan, Arizona Otolaryngology Consultants, Phoenix 602- 264 -4834, http://www.aocphysicians.com (another possible doctor there is Dr Peter Weisskopf, Neurology)
Please don’t think me an alarmist, but your symptoms sound pretty serious & a second opinion on your scans & venogram results would be worthwhile.
Yah, I’m actually going to retract a bit of what I said and agree with Isaiah here. I didn’t see your post history and looked it over and while I still think a positive angiogram is great news, I do agree that the severity of your symptoms doesn’t match up with everything being normal.
I also don’t want to come across as alarmist but I thought this was just a case of potential IJV compression. Definitely try to get a second opinion as Isaiah suggested. You had quite a few finding in your CTs and they can’t all be brushed off with the symptoms you are experiencing.
About CT showing severe compression but angiogram being normal, I believe an angiogram is more accurate for assessing the true situation. Visible stenosis does not always equate to outflow obstruction. So if that was the only issue here then that would be great, but I believe there’s more going on here then just potential IJVS.
So sorry that the test results don’t match your symptoms, & I agree with the others that your styloids could still need removing to help with nerve pain permanently, and is worth getting another opinion
Thank you all for the push to keep looking. I will try. At this point I have seen 14 medical doctors in 4 different states. I’m beyond exhausted. I don’t know if I have the strength to keep trying new doctors and traveling out of state again. There is nobody near where I live and I can’t fly, so we have to drive every time. Maybe I just need a break. I don’t know. I’m just so exhausted and weary right now and want to give up.
@BlacknBlueSaint, since you’re in Phoenix, you could try to see if you could get in to see Dr. Milligan on short notice. You could explain you’re from out of the area & are seeking a second opinion.
I’m really sorry for what you’ve been through. The ES journey is not for the faint of heart though we can become faint of heart along the path after so many rejections. I will be praying for you to have the strength you need to pursue the help you need whether now or after some recovery time from this trip.
I’m nervous, but ready to get this done and know what all is happening! I’ll update here when I get the results!