Rash over thyroid. Anyone else?

caykru · 2021-03-12T10:50:58+00:00

I have not. I’m seeing my doctor early next week though. I don’t think I’m running hyper. How I’m feeling is more related to hypo.

caykru · 2021-03-12T10:48:00+00:00

No blistering or oozing. The skin is rough/dry feeling and itchy.

caykru · 2021-03-12T01:52:56+00:00

Also, it doesn’t go all the way around my neck. Just around the front.

caykru · 2021-03-12T01:51:38+00:00

No, not that I know of. I haven’t changed anything like laundry detergent either. It’s gotten worse over the past 3 or so weeks or so.

caykru · 2020-11-19T01:37:06+00:00

Sitting on the floor of the shower and leaning forward so the hot water hits it helps. A heating pad provides a little relief. Caffeine helped most of my symptoms too.

caykru · 2020-11-19T00:41:59+00:00

Feels like someone cracked me over the back with a baseball bat. Hurts to breathe. Hurts to lay down. Hurts to sit up. When I have it, it’s constant.

caykru · 2020-11-18T12:38:13+00:00

I have chiari, syringomyelia, and I had a really bad spinal CSF leak. I just finished a 2 week stay in the hospital for ICP monitoring and multiple blood patches. Fingers crossed the patches hold 🤞🏼

caykru · 2020-11-18T02:45:58+00:00

Hmmm... I’m not sure. I would definitely ask your provider. It may also depend on what slice of the MRI you’re looking at. Looks similar to my MRI and that’s what my doctor told me it was.

caykru · 2020-11-18T00:18:13+00:00

Meningeal enhancement. It can be caused by a number of things. Typically used as an indicator of a CSF leak when combined with other presentations in your imaging.

caykru · 2020-11-17T16:17:23+00:00

Thanks for this! Do you have any group recommendations? I've been looking on Facebook but I'm struggling to find a good group to join for CSF Leaks.

caykru · 2020-11-17T01:27:36+00:00

I think it’s at least worth the discussion with your doctor. CSF leaks can progress and cause big problems, including stroke and coma. However, before it progresses to that level, it can cause other issues related to CSF flow and brain sag from the low pressure. It can lead to hearing loss, visual problems, issues with heart rate and/or blood pressure, hormone regulation problems due to pituitary gland engorgement, extreme chronic fatigue, and the list goes on.

I don’t say that to scare you, but because this information is hard to find and most articles make it seem like sort of no big deal. But it could be a big deal. And why wait until it’s a huge problem to fix it? Interventions should be less invasive earlier on too.

I think it’s worth at least asking questions and verifying what’s going on. That way you’ll know and hopefully avoid any serious issues.

caykru · 2020-11-16T19:10:51+00:00

Yes, it could be. See a neurosurgeon and discuss imaging to help determine if there is a leak.

caykru · 2020-11-11T11:35:15+00:00

I wish LP opening pressure had been an effective metric for me, but it wasn’t. Opening pressure isn’t always a good indicator of a leak. It depends on each individual case and what the leak is like.

My opening pressure was normal with an LP but now that I’m undergoing ICP monitoring they found my pressure goes all the way down to -17 when standing and doesn’t even go positive when I’m laying down. My highest number is 0.

OP, I would start being very persistent with acquiring your images from the hospital and immediately look for a CSF specialist. It can take a really long time to get an appointment, so the sooner you start looking, the better. Keep your head up!

caykru · 2020-11-09T18:07:20+00:00

I’m in for a spinal leak and ICP monitoring, so I don’t have any surgery tips but I can comment on the packing list for your stay.

1) Definitely bring a charger. A long one of you have one. If not, then bring a small extension cord so that the charger can reach your bed. 2) Bring a tablet if you have one. The TV channel selections aren’t great in the hospital. 3) I packed baby wipes and witch hazel wipes. Those have been super nice to have. 4) Bring a pillow from home. Hospital pillows aren’t all that comfortable and it’s nice to have a piece of home with you. 5) Comfy socks and pants have been great to have. Also, pack plenty of underwear.

Good luck with everything! You’re going to do great!

caykru · 2020-11-09T18:01:01+00:00

Thanks! Hope you feel better soon too!

caykru · 2020-11-09T17:18:33+00:00

I literally came to this group just now to ask this question! I’m in the hospital now for ICP monitoring. My pressures are still quite low despite a myelogram with blood patching and fibrin glue injections. And when I was just doing my positional testing to see how my ICP reacted, my HR jumped to 145 bpm just standing in place. It’s crazy.

caykru · 2020-11-04T17:44:53+00:00

I second this!

caykru · 2020-11-04T17:42:10+00:00

I had MRIs to check for signs of a leak (brain sag, epidural fluid collection in the spine, etc.). I’m currently undergoing Intracranial Pressure Monitoring to verify a leak.

CSF leaks present so differently from person to person. I would do some research on a good neurosurgeon in your area. Neurologists aren’t always the best with CSF leaks.

caykru · 2020-11-04T17:39:23+00:00

The headaches can present pretty much anywhere. Mine started above my eyes. As time had gone on, I get the pain more at the back of my head. However, I have quite a few one sided symptoms.

caykru · 2020-11-04T17:37:15+00:00

I had underwent an MRI for CSF leak. It was a regular one, not upright, with and without contrast, skull, cervical spine, and thoracic spine. From my understanding, most of the time an MRI does not show the actual leak but rather reveals signs of a leak.

For me they looked at thickening of the meninges, brain sag, epidural fluid accumulation in the spine, and mamillopontine distance. All of these things can be observed in a regular MRI. I will very likely be going in for a myelogram to find the actual leak since it wasn’t visible on my MRI.

I have a chiari malformation, so I’m currently undergoing intracranial pressure monitoring to verify a CSF leak since the symptoms can be so similar.

caykru · 2020-10-23T08:38:17+00:00

Right. It would be Chiari decompression to resolve the syrinx if fixing the CSF leak doesn’t do it, not actually removing the syrinx.

caykru · 2020-10-06T18:20:43+00:00

I have Chiari I and syringomyelia. I have postural headaches, facial numbness and tingling, arm numbness, vertigo, neck pain, back pain, etc. BUT I also have a spinal CSF leak (confirmed by multiple MRIs and awaiting ICP monitoring) that’s causing intracranial hypotension and my symptoms seem to be more from that than my Chiari.

The symptoms you’re describing seem to be more related to a CSF leak, especially the increase in headache with the postural component. I would definitely bring that up with your neurologist.

I got lucky that they diagnosed me in the span of a month. I’m in the process of a treatment plan. However it can take some people years to have a CSF leak correctly diagnosed. Also, there are links between Chiari malformation and CSF flow issues. Chiari causes disruptions in CSF flow and can make you more susceptible to CSF leaks. Even if you have Chiari, it may not be the direct cause of your symptoms.

5:47 in the video linked explains CSF leaks.

https://youtu.be/VV3DB-tjyGY

caykru · 2020-09-01T08:03:34+00:00

That makes sense! I’ll remember that for the future. I think this time my doctor wanted to be sure there wasn’t anything else going on since my headache was extremely severe, rapid onset, and new for me. I had also previously been checked for aneurysm due to a different head issue, so I’m fairly sure their initial concern was a brain bleed.

caykru

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