I finally met with Dr. Puram at WashU last Monday. I also had another CTA done. I was appreciative of his straightforward response and his willingness to listen to my health journey so far. He gave it to me straight and said he’s not sure if removal of the left styloid would relieve my symptoms but was willing to break it off. At the time of the appointment only he had reviewed my CTA. In the appointment he relayed that he didn’t see any compression of the jugular vein. I asked if he could conduct a dynamic doppler to see if blood flow is restricted with movement as most of my symptoms point to vein compression. He agreed and sent over a referral to see neurology to perform the test. I do have to say I was disappointed to an extent and felt I was being blown off again.
Yesterday I received an update on my CTA stating the head physician in radiology had reviewed it. This is what he noted
“Bilateral elongation of the styloid processes, measuring 3.9 cm on the right and up to 5.0 cm on the left. There is mass effect on the already hypoplastic left internal jugular vein, which is mildly compressed between the styloid process in the left C1 lateral mass. However, the remaining aspects of the left internal jugular vein are patent and normal. Remaining vessels of the neck are of normal course and caliber.”
I messaged Dr. Puram back and he said this does change how they will proceed as my jugular vein is being mildly compressed along with it being underdeveloped on the left side. He also sent another email to the neurologist Dr. Osbun at WashU. The ball seems to be rolling now as I received a call this morning to make an appointment for this Friday to see Dr. Osbun. I’m not sure if he will still want to do a dynamic doppler or not with the amended report. From what I’ve been told it seems like Dr. Osbun and Dr. Puram will be performing my surgery together now and taking the styloid off at the skull base.
With all that being said, I finally feel like I’m being heard. I’ve been praying everyday for the doctors and for God to heal me and prayers are starting to be answered. This truly has been the hardest battle of my life. Worse than being in a war zone.
That’s great that the CT showed the IJV compression, doesn’t sound like you’ll need the doppler doing now? And good that you’ll see the doctor on Friday…
It sounds like Dr Osbun is used to doing skull base surgeries (I just looked him up!), you had me a bit worried with Dr Puram going ‘to break the styloid off’ as that might not be enough to help… We do have a list of questions to ask your doctor if you want to have a read of them:
- How many ES surgeries have they done and what was the success rate?
- Whether they’re going to operate externally, or intraoral- through the mouth. Whilst some members have had successful surgeries with intraoral, external is better for seeing all the structures, to be able to remove more of the styloids, & also there’s less chance of infection.
- You need to ask how much of the styloid he’ll remove- as much as possible is best- & anything left needs to be smoothed off. The piece needs to be removed too- some doctors have snapped it off & left it in! If the styloid is only shortened a bit it can still cause symptoms.
- If your stylohyoid ligaments are calcified, then any calcified section needs to be removed too.
- There’s usually swelling after surgery; you could ask if a drain’s put in to reduce swelling, or if steroids are prescribed. It’s not essential, but can help with recovery a bit.
- Will it be a day case surgery or will you need to stay in?
- Obviously ask the risks- we know from experience on here that temporary damage to the facial nerve is quite common, and also the hypoglossal nerve and the accessory nerve. These usually recovery very quickly but in some cases members have needed physiotherapy. There is also the risk of catching a blood vessel or having a stroke, but these are very rare.
- Ask if the surgeon monitors the nerves- this should be done to see if there’s stress on the nerves to avoid damage as mentioned above.
- What painkillers will be prescribed afterwards.
- Ask about recovery- most doctors either down play it or are genuinely unaware of how long the recovery can take!
Also as you have IJV compression, you could ask if they check that the blood flow is returning to the vessel, and if they look for any other possible compressions- some members have needed a C1 shave as well, and some had compression by other soft tissues, like the digastric muscle, other blood vessels or nerves…
Let us know how you get on!
Thank you! I will update as soon as I know more.
I personally would be getting other opinions based on this. I would like into Costantino for C1 involvement.
I agree @Brandy. Dr. Cognetti is also an option.
Thank you for the continued support and suggestions! I saw Dr. Osbun last Friday and he agreed that my styloid processes on both sides were too long and that on the left my IJV was compressed between my C1 and Styloid. He wants to conduct a CT angiogram inserting a catheter in the artery in my wrist to examine blood flow in real time. This he said would help him formulate a game plan for how to proceed. He also mentioned he has done many of these surgeries and his patients all had tremendous relief. I will have the CT angiogram on 8/11 and he will then present my case to a vascular conference that following Thursday. Praying that I will be on the road to recovery soon!
Good that he’s doing his diligence & getting testing done beforehand…I’m glad that he’s done other surgeries, sounds like we might have another name for our list!
Yes, if all goes well those are my thoughts as well!
That’s fantastic news @njess! I hope all goes very well for you. Please let us know when you have a surgery date.
It would be fantastic to have a couple of doctors to add back on our Doctors List for MO.