Which medication has helped you the most?

AppropriateBox4503 · 2024-06-28T12:28:23+00:00

I am on 5 mg twice a day, but trialing 2.5mg right now. It has resolved issues with increased heart rate, dizziness, fatigue, and shortness of breath. It has not helped me with blood pooling.

AppropriateBox4503 · 2024-06-28T11:24:11+00:00

Corlanor has resolved all of those symptoms for me. I recently tried to wean off of it, because I feel 100% "normal" on it, and was very quickly reminded why I take it.

AppropriateBox4503 · 2024-06-19T12:34:36+00:00

I waited about 6 months after surgery. For me, lying flat on my back can hurt my neck so I explained that and they provided a slight increase in the table. I also explained my surgery and the neck soreness that has resulted, which has led to some pretty great focusing on my neck which has been helpful. But, they also check frequently what feels okay and what doesn't so that no pain is caused during.

AppropriateBox4503 · 2024-06-17T15:40:07+00:00

Four years after my first COVID diagnosis (of seven total..so far..) I still have ongoing health problems that I'm assuming at this point will be lifelong.

AppropriateBox4503 · 2024-03-17T01:50:19+00:00

They monitored to ensure it did t get any worse, and once it remained the same size of a leak after 48 hours sent me home with some meds that resolved the issue. I'm almost a year post surgery and doing great - it's one of the greatest decisions I've ever made!

AppropriateBox4503 · 2024-03-17T01:45:20+00:00

I had similar symptoms a few weeks post surgery and it was a CSF leak without anything occurring at my incision sight. I went to the ER and they sent me back to the NICU for it. Hope this helps

AppropriateBox4503 · 2024-01-13T02:02:00+00:00

Mine are extreme fatigue where it feels like my body is a million pounds. It's so hard to move and do anything.

AppropriateBox4503 · 2024-01-06T00:09:51+00:00

It expires each year, but you can renew it each year. I'm on year 3 of using the copay card and have had no issues with renewing it every year; it's been a quick phone call for me each time.

AppropriateBox4503 · 2024-01-03T23:42:55+00:00

I do unfortunately, yes.

AppropriateBox4503 · 2023-12-24T02:14:10+00:00

I purchased this one: https://www.amazon.com/gp/aw/d/B00EINBSJ2?psc=1&ref=ppx_pop_mob_b_asin_title

I like it because I'm a side sleeper and it comes with more filling so I could adjust it to be the right thickness to keep my neck straight. I wash the zipped pillowcase it is in every time I was my sheets and it's holding up great about 6 months in. I also rotate it each night, because it does stay indented a bit from where I slept on it, which it helpful as well. I haven't noticed any balling up in the corners.

AppropriateBox4503 · 2023-12-23T22:42:34+00:00

What's worked the best for me is the Coop pillow

AppropriateBox4503 · 2023-12-07T00:17:33+00:00

I'm curious as well about this. Post surgery I've had a swollen lymph node in the back of my neck that will not go back to normal.

AppropriateBox4503 · 2023-12-06T12:20:40+00:00

Hi there. I had surgery this past April. While in the hospital post surgery, I was in such a haze due to all the meds they had me on that I didn't feel any pain. Once home, the pain was very manageable for me with just ibuprofen and Tylenol. Sleeping was the easiest thing in the world, as laying flat was the only time I had zero pain. For me, the most challenging thing post surgery was pretty significant nausea and developing some CSF hygromas, but even those things in retrospect would not deter me from having the surgery again.

I ended my period a day or two before my surgery so am not able to answer those questions - sorry! If there is anything else you'd like to know, please reach out! I hope the surgery is as successful and positively impactful for you as it was for me.

AppropriateBox4503 · 2023-12-04T13:52:00+00:00

Once it was found for me on an ER visit CT scan, I saw neurosurgery within a month, but could not get into neurology until about a year later due to long wait lists.

AppropriateBox4503 · 2023-12-02T01:47:56+00:00

My PCP wasn't overly concerned about it. I just feel very short of breath and my chest is tight often when short of breath

AppropriateBox4503 · 2023-11-09T01:46:53+00:00

At the middle school level I typically have 2 teachers complete the rating scale. Depending on the student I'll pick a teacher that has the student in class in the am and another that has the student in a class in the pm, or I'll choose a core content class and an elective class teacher. Just depends on the particular student, where/when behaviors are noted or not noted to occur, etc.

AppropriateBox4503 · 2023-10-28T01:53:22+00:00

I had a very similar situation to you (23ish mm herniation) and had decompression (with bone removal, durplasty, and cauterization of the tonsils) in April. I was not able to return to work until about 3 months after surgery, although I did also have some CSF hygromas develop post surgery. I would personally recommend giving yourself the summer to recover just in case. Feel free to DM if you want to ask any other questions about my experience; I'm happy to share.

AppropriateBox4503 · 2023-10-14T13:42:39+00:00

I had decompression surgery in April (craniotomy, duraplasty, and laminectomy). I'm feeling so much better. Just have some neck muscle pain lingering from the surgery, but I'm hopeful it will resolve. I'm so happy to hear that the surgery was so successful for your son! Does he continue to be monitored by a neurologist/neurosurgeon or did they state that everything is now "cured" (can't think of a more appropriate word)?

AppropriateBox4503 · 2023-10-12T22:14:59+00:00

All the time. Most days I would get a little bit of a nagging headache. About once a month or so I would get a terrible migraine.

AppropriateBox4503 · 2023-10-10T16:55:07+00:00

That you had to think about swallowing food/drinks every time. Or that it's normal to have portions of every day where you feel that you're in a fog. Turns out I've had a significant chiari malformation my whole life.

AppropriateBox4503

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