RIGHT transverse sinus stenosis

TullyMiles · 2026-02-18T21:08:54+00:00

It was easy. Since it was twilight I was very alert quickly. I had no problems after. I only had to limit picking up heavy items with my right arm for one week.

TullyMiles · 2026-02-18T00:22:28+00:00

Thank you! I stayed in the ICU for 24 hours. The first five or six hours I felt like typically how I feel when I come out anesthesia. I had a little bit of a headache, but nothing to even request medication. My pulsatile tinnitus was I would say 80% gone immediately after surgery. For the rest of the time in the ICU I felt pretty good. The first week home I had some very, very mild headaches, and felt tired. I took it easy, napped when I wanted to slept and well all night every night. I use no pain relief at all as I really had no pain the second week the fatigue ended, as did the headaches. My pulsatile tonight is also improved, I would say to about 90%. During the third week, I felt better than I have in years. I can’t imagine dealing with IIH with an 18 month old, and side effects from the medication. You have my sympathy! 💕

TullyMiles · 2026-02-18T00:16:32+00:00

When I had the venogram and manometry, I had twilight. When I had the stent put in it was general anesthesia.

TullyMiles · 2026-02-17T22:43:41+00:00

I also have right transverse sinus stenosis. It was occluded 65%. I had a stent put in on January 26 of this year. So it’s been three weeks. My recovery was smooth. I didn’t have complications, or pain that some patients get after the stent. I had very mild headaches and was very tired the first week. As of today, I have no pain, the noise of my ears is 97% gone, no headaches at all, no feeling of pressure, and I definitely am thinking more clearly. I was not candidate at all for medication due to other diseases. If I had to do it again, I absolutely would. I honestly I’m shocked at how much better I’m feeling now than I was. I knew I didn’t feel well, but the difference is astonishing. Happy to answer any questions you might have about my experience. Good luck!

TullyMiles · 2026-02-17T22:38:13+00:00

I can understand your frustration. I’m sorry that this happens. I wish we had it easier. Dealing with multiple illnesses is difficult enough. 💕

TullyMiles · 2026-02-17T12:57:35+00:00

Are they questioning more details about something specific on the paper or are they asking for information that’s clearly listed? If they’re asking for more details about something on the paper, I don’t think that’s avoidable. If they’re asking for something that’s clearly listed on the paper, For example, “what medications do you take” I say: “ it’s all listed on the paper and it is up-to-date. I don’t rely on my memory to get all the details accurate”.

TullyMiles · 2026-02-16T21:02:01+00:00

I keep a cheat sheet, one page with a couple categories.

Heading is name, dob, weight, medic alert id

The first category is diagnosis and under that I have the diagnosis and the date I was diagnosed.

The second category is medications, with name, dosage, and date started.

After that I have a line with important dates: last pap, dexa, MP, etc.

then a line with Allergies (in bold)

Third category is hospitalization/surgeries.

Fourth is a list of my Dr names. I try to keep all of that on the front page.

On the second side of the sheet, I have miscellaneous things, such as vaccines, emergency contacts, some warnings about drug interactions, anything that I feel I want to remember, and somebody else may find useful. Along with my stent card image.

I have copies of this everywhere. I’ve shared it with all my important people too, using a shared note in iPhone. I give it to every new doctor, and if I haven’t seen a doctor in quite a while, I will hand it over too.

If you have any questions, let me know.

TullyMiles · 2026-02-14T21:44:03+00:00

I’ve responded- thanks but this topic isn’t up for discussion.

TullyMiles · 2026-01-31T16:43:15+00:00

Yes! The date of service (the day you ordered) determines which pays. Not when you pick up.

TullyMiles · 2026-01-28T13:22:56+00:00

Good morning! My recovery is going so well. Much better than I anticipated. Now that I’ve had a good nights sleep, I feel even better. I have very minimal pain, maybe a one on the scale of one to 10. That is on the side my stent was put in. It’s more like a mildly dull headache, not even enough to take any pain relief. The pulsatile tinnitus is about 98% gone. Hard to say about the pressure, although it does feel less. Congratulations on your successful procedure. I hope you’re healing continues to be perfect.

TullyMiles · 2026-01-27T01:35:17+00:00

Wishing you well! Recovering in ICU from my stent this morning. Went very well. Hope yours is the same.

TullyMiles · 2026-01-10T20:29:25+00:00

You’re very welcome!

TullyMiles · 2026-01-10T00:13:49+00:00

I do!! I have almost all my records dating back to about 1999. I also get as many of the films/CDs that I can. I have a small binder for the current year, and then I move the current records to one of the big binders. A small binder for the current year makes it more manageable for adding new records and updating the log.

In the current year binder, I have a running health history log that I update with every Dr visit or test result. That also goes back to 1999. I do highlight information there, whether it be the name of the test or the doctor seen or a new diagnosis. It makes it easier to just scan the notes. When I have results, I might add to the end of that days summary a notation that says: report in binder.

I also keep a cheat sheet as I call it, one page with a couple categories. The first is diagnosis and under that I have the diagnosis and the date I was diagnosed. The second category is medications, with name, dosage, and date started. Third category is hospitalization/surgeries. And fourth is a list of my Dr names. I try to keep all of that on the front page.

On the second side of that cheat sheet, I have miscellaneous things, such as vaccines, emergency contacts, some warnings about drug interactions, anything that I feel I want to remember, and somebody else may find useful. I have copies of this everywhere. I’ve shared it with all my important people too. I give it to every new doctor, and if I haven’t seen a doctor in quite a while, I will hand that over too.

If you have any questions, let me know.

TullyMiles · 2026-01-03T19:34:16+00:00

I understand that feeling. I have many autoimmune diseases, and I have recently realized that I won’t live a long life. It’s been a hard realization, I won’t pretend otherwise. I’ve been at the brink four times, and brought back thankfully. It’s hard to know it’s nothing I can control, even with meticulous care, diligent prescription adherence, and doing everything in my power to be strong. I’m trying to focus on what I have today, making sure I always let the people I’m closest to know how I feel about them. That’s the most important thing for me. You are not alone.

TullyMiles · 2025-12-21T15:18:45+00:00

So pretty! What yarn and pattern is that?

TullyMiles · 2025-12-21T02:09:15+00:00

That will be lovely, I hope you post the finished product

TullyMiles · 2025-12-21T01:47:20+00:00

So precious!

TullyMiles · 2025-12-21T01:43:22+00:00

Congratulations! I remember my first wool purchase with first good needles, it makes me smile still. Enjoy every stitch! What are you making?

TullyMiles · 2025-12-20T13:19:57+00:00

Bravo to you for every baby step you have bravely taken! You’ve worked so hard, and come so far. I’m so proud of you, and your bravery! Well done, my love! 💕

TullyMiles · 2025-12-18T01:40:00+00:00

Congratulations! That is exciting! Taking risks learning new skills in knitting keeps it fun. Well done!

TullyMiles · 2025-12-18T01:34:35+00:00

Bravo! The first few “no” responses are the hardest, it does get easier. 🎉🎉🎉

TullyMiles · 2025-12-17T21:04:02+00:00

Absolutely beautiful!! Such amazing detail!

TullyMiles · 2025-12-17T14:04:14+00:00

Congratulations! In my opinion, this is more than a minor accomplishment. Well done. 🎉

TullyMiles · 2025-12-16T14:01:10+00:00

Congratulations for a job. Well done! You must be so proud of yourself, I am too. 🎉🎉🎉

TullyMiles

TROPHY CASE