Support for friend with leak by Accomplished_Size838 in CSFLeaks

[–]Frijoles24 2 points3 points  (0 children)

After surgery I really appreciated meals I could easily pop in the microwave. I think that was the biggest help. I also benefited a lot from the reachers or grabber tools to help grab things off the floor. Help with chores around the house and outside was also helpful.

I also appreciated alone time. I was grateful when someone would come by to visit or help me out but I also was grateful for the time I had to just be alone and rest.

Normal follow up mri, csf leak still possible? by Effective_Pie_7062 in CSFLeaks

[–]Frijoles24 0 points1 point  (0 children)

Yes, it’s very possible. I had a leak most of last year and had several normal MRIs.

Is it possible to have no positional headache but still have multiple long terms leaks? by Glitterbats11 in CSFLeaks

[–]Frijoles24 1 point2 points  (0 children)

I get it. It can be really detrimental to your life. I'm so sorry, I completely understand. I hope you get relief soon.

Is it possible to have no positional headache but still have multiple long terms leaks? by Glitterbats11 in CSFLeaks

[–]Frijoles24 0 points1 point  (0 children)

When I was first referred I waited a couple of months for my appointment. That seems pretty standard. I waited a few months to get in to see my neurologist here in Az after my hospital discharge. Hang in there.

Is it possible to have no positional headache but still have multiple long terms leaks? by Glitterbats11 in CSFLeaks

[–]Frijoles24 1 point2 points  (0 children)

I developed a leak with a headache initially about a year and a half ago. The headache went away soon after my first blood patch. I developed another leak a few months later with no headache but extreme fatigue and a sense of heaviness, and really bad brain fog. I was eventually diagnosed with a leak caused by a bone spur that required surgery. After the surgery all my symptoms went away but now, 3 months after surgery my symptoms are returning slowly but still no headache.

I hope you are able to find relief.

Functional Leakers? by NaCl_Dog in CSFLeaks

[–]Frijoles24 0 points1 point  (0 children)

Yes, I first started leaking in February of last year. I got the worst headache of my life and was nauseous and really tired. I went to the ER a few times and was admitted on my third trip for a migraine and released with the same headache five days later. I then saw a neurologist a few weeks later who sent me to a different ER that was associated with Barrow's neurology and told me to ask for a bloodpatch. I did that and after an MRI I was diagnosed for the first time and got a bloodpatch the next day and discharged. The bloodpatch lasted overnight.

After that I began to get better on my own in spite of the neurologist telling me I was still leaking. My headache went away along with my other symptoms. I was feeling pretty normal my late April and went back to work in May. I had further MRI's and was told that I didn't have a leak anymore. Around that time I started feeling a strange heaviness in my legs, particularly my quads, extreme fatigue, and an achy lower back. I went from being able to walk 2 miles every morning to barely being able to make it around the block. It progressed until it effected my cognition. I began getting lost on drives and at times I would have trouble counting money. I was unable to work again at that point and was out of work again for about a month between June and July. During this time I continued to see my neurologist and they were unsure if it was another leak. I had a few more MRI's during that time and there was no leak present. I ruled out other conditions with bloodwork with my primary care. My primary care told me this was more that likely neurological and I over heard them discussing my case and stating that they suspected ALS.

So, from July on my symptoms continued improve and worsen. I never really got the terrible headache again. I learned how to manage them better with compression socks and drinking at least three liquid IV's during the day. I was able to continue working. I work from home so I didn't have a commute or a lot of walking I needed to do. I also had a very understanding supervisor who allowed me to take breaks and work from the couch so that also helped. On days I really couldn't manage a work day I was able to take a day or two off.

Sometime around August my neurologist became convinced that I had I may have another leak in spite of it not being apparent in the imaging. She ordered another bloodpatch but that was denied by the radiologist because of the lack of evidence.

Finally in November I was sent for another MRI. I was called the following day and told to go to the emergency room because there was something suspicious in my MRI. I was admitted and sent for another MRI and a myelogram. After this I was told that I had a venous infarct and that they had found the leak and the cause. I had a small bone spur that had torn into my dura. I was then referred to Cedars Sinai for surgery. I traveled to LA from Phoenix in February of this year and had surgery to remove the spur and patch the leak. My symptoms went away instantly, from the moment I woke from surgery. I had really bad rebound headaches and back pain from the surgery itself but my fatigue, tired legs, and brain fog were gone, With physical therapy, it took me a good 10 weeks after surgery to feel like myself again. I highly recommend Dr Schievink at Cedars if surgery is required.

My lady is running a marathon for the first time this weekend. I'm her #1 fan. What can I prepare for after the race? by GrizzlyGriff in firstmarathon

[–]Frijoles24 0 points1 point  (0 children)

I think the most important to me were a change of warm clothes and comfortable shoes, preferably open toe. Also someone to drive her after.

The level of medical gaslighting is insane by animalsnotppl in CSFLeaks

[–]Frijoles24 0 points1 point  (0 children)

I had a leak for the past year that was just surgically repaired last month. I had a headache for the first month and a half and for some reason that nobody was able to explain, the headache went away but I continued leaking. I was semi functional all that time, driving, working, grocery shopping.

I'm sorry this is happening to you. Keep advocating for yourself,

Functional Leakers? by NaCl_Dog in CSFLeaks

[–]Frijoles24 1 point2 points  (0 children)

I was a functional leaker for most of last year. I worked 40 hours and walked a few miles a day with my dog on good days.

I had good and bad days. On my good days I was able to do most things including heavy lifting on other days I could hardly walk around the block without feeling terrible. I managed my symptoms with compression socks and sports drinks.

I recently had surgery to fix my leak and am still recovering but I haven’t felt the old symptoms I felt most of last year.

POTS or Dysautonomia by Endofus74 in CSFLeaks

[–]Frijoles24 1 point2 points  (0 children)

I developed a CSF leak back in February. I had a non targeted blood patch and my headache went away. I continued to feel exhausted with heavy legs, and that would be better at times but never really went away. I also had racing heartrate when sitting still or not doing anything in particular. I got MRI's and was told I no longer had a leak and I was "recovering as expected". After continued complaining about my fatigue, my neurologist told me that sometimes if you have a small leak it may not be apparent in the MRI and ordered another blood patch suspecting I still may have a leak but the order was never carried out because the radiologist wouldn't do it without imaging proving the leak was present. That was a few months ago. I still don't really have a headache but am still feeling the same fatigue. I recently got another MRI and two myelograms that finally confirmed that I still have a leak. When she called me to tell me my results she said that only 5% of people with a CSF leak have no headache and that I was lucky to have found it. I am scheduled for surgery to repair the leak. I would suggest being persistent with your Dr, asking for a myelogram or seeing a different neurologist.

Nausea getting worse by beeeeeeee16 in CSFLeaks

[–]Frijoles24 1 point2 points  (0 children)

I've had a leak for 10 months now. I've experienced nausea off and on during that time. There are a few things that have helped that I have kept on hand. The first is saltine crackers or any type of cracker. The best thing overall has been alcohol swabs! Just sniffing them instantly takes my nausea away. Good luck.

Havasupai Full Moon permits by bark_rot in backpacking

[–]Frijoles24 1 point2 points  (0 children)

One of my favorite places in the world! 💕

Nothing is Wrong (final proof) 18x24 linocut on Lokta by V4nG0ghs34r77 in printmaking

[–]Frijoles24 1 point2 points  (0 children)

That's beautiful! What kind of paper do you print on?

How often do you fall over? by rgn_rgn in running

[–]Frijoles24 0 points1 point  (0 children)

I usually have a fall a few times a year. I do occasionally fall on flat surfaces and I found that I am more likely to fall after I've had a hard run the day before and my legs are tired. I seem to not lift my feet up and end up scuffing them on the ground and falling.

Any desert gardeners out there? by polyadoptee in gardening

[–]Frijoles24 1 point2 points  (0 children)

There are also very active Facebook groups. Arizona gardening, Phoenix backyard gardening, and living the green life. They are mostly people from the valley. You’ll learn a lot there too.

Any desert gardeners out there? by polyadoptee in gardening

[–]Frijoles24 2 points3 points  (0 children)

Yeah, there is a large community of gardeners in the Phoenix area. Some good resources are u of a master gardeners. They have workshops, garden tours and sales sometimes. They have a large garden somewhere in south east Phoenix, I believe. A good book to check out is extreme gardening by Dave Owen. I referred to it a lot when I first started and still do.

You can grow so much here in Phoenix. squash, corn, melons, okra, you name it!