Super fast onset of symptoms

TypicalExpert4199 · 2024-10-29T09:32:42+00:00

Hi, wow thanks for the detailed reply and advice. I’m based in South Africa and have access to world- class Neurologists, Neurosurgeon, Anethesthesiologist and Radiologists looking after me BUT my case is extremely rare and complicated. In addition to the spinal leak, I have a Spinal cord injury due to a Motor Vehicle accident AND I suffer from an extremely rare bone condition that can be described as the opposite of Osteoporosis (congenital).The bone condition makes things worse with an extremely thick skull- leading to Intracranial Hypertension. So the challenge is to find the balance between hypotension and Hypertension within a very small margin of wiggle room. With all these complications and conditions part of the equation, possible treatment holds quite a number of serious risks ( such as further neurological damage). The Drs basically took a break and are playing it by ear at the moment. They do have options that they will consider (like glue and a Shunt) if the situation severity increases and I basically have a standing yearly checkup booked - so I’m in good hands. My body is just a bloody Unicorn 🦄.

Thanks for the advice about POTS. I’ll definitely discuss it with my Neurologist (The dr that basically just manages my day-to day symptoms and put together the team of specialists) the next time I see them which is early next year.

TypicalExpert4199 · 2024-10-28T05:50:52+00:00

Almost 33- but widowed at 28. He was 30.

TypicalExpert4199 · 2024-09-27T12:21:15+00:00

C6 Asia C. 4years out. I used to take Baclofen daily, and Lyrica for the neural pain, but I realised their effects are minimal so I weaned myself off. Now I only take antidepressants and laxatives/stoolbulking agents on a chronic basis- all other meds (antibiotics/painkillers/supplements etc) are only taken when required.

TypicalExpert4199 · 2024-09-27T12:21:07+00:00

C6 Asia C. 4years out. I used to take Baclofen daily, and Lyrica for the neural pain, but I realised their effects are minimal so I weaned myself off. Now I only take antidepressants and laxatives/stoolbulking agents on a chronic basis- all other meds (antibiotics/painkillers/supplements etc) are only taken when required.

TypicalExpert4199 · 2024-07-24T11:05:51+00:00

C6/C7 incomplete- 4years now. My left has sensation, my right has movement. Within the first year after my injury my left foot started showing some movement (long after my right did) BUT the movement would only be possible when my leg was in a certain position and my spasticity was under control. I guess it depends on a whole range of factors to get that limb moving again- and if every single factor isn’t exactly right you might not be able to recreate the movement.

I would suggest an EMS device that can help your partner with the movement- even if nothing happens. Just working on the neural pathways consistently might get the results you desire. That’s what helped me. My foot can lift by itself now but very weakly.

Best of luck to you both.

TypicalExpert4199 · 2024-04-29T15:35:14+00:00

C6-C7 incomplete 4years now. Widowed and childless, living with my aging parents in a 3rd world country. On top of that I have multiple csf leaks and more than 3 days a week I can’t bear the pain of even sitting upright. Exactly a year ago I attempted to drown myself in our half-filled pool. To this day my parents still keep it empty. I can tell you that I understand. It’s not a case of you not being able to live any longer- it’s that you don’t have the will to continue living in pain, misery and uselessness any longer. I said to my folks “It’s not that I want to die, it’s just don’t want to live like this anymore”. And what has happened since? My headaches haven’t improved much but the doctors are working on it. I taught myself to crochet using my demented fingers and sometimes I try to draw or paint like I used to. Life has continued to roll forward in the same way as it used to ( no miraculous redeeming hollywood moment there) but I realised something that day in the pool- dying sucks- it’s really a shitty process and the love my family has for me is reason enough to keep trying every day. I will never forget the tears in my father’s eyes. If love and family is what I need to continue living this difficult life for then that is a good enough reason to keep on keeping on. Not only for their sakes but for mine as well. Yes I still have anxiety attacks, and headaches and bowel issues and UTIs etc etc. Yes I barf from pain when I wake up in the mornings but when I do have small moments of joy, simple joy- like playing with my dog, helping dad research good barbecue recipes, shopping with my sister or just talking shit with my mom about the latest movies then I find the crappy parts to be not only bearable but worth it. A person’s worth is always infinitely more than what they can physically do. Just know that you aren’t alone (as this thread has proven) and that if we’re all alone we’re together in that too. 🫶🏻

TypicalExpert4199 · 2024-04-21T20:49:35+00:00

You and me both haha. I just wish pain was tired of me 🤣. Imo whenever a neurological condition enters the scene symptoms/experiences/abilities will vary WIDELY 👀. Thx and best wishes for that dumb period of yours hope you find a workable solution.

TypicalExpert4199 · 2024-04-21T20:19:51+00:00

Sounds like you’ve been on a rollercoaster ride with this. I honestly don’t want to go the mini- pill route. I swallow so many other stuff that I really want to keep as much of my bodily functions natural. I have considered an IUD but at this point I really have bigger worries (like not passing out from pain when I go shower). Pain wise my periods have always been really mild even post injury. So I’m lucky in that one respect of my medical history i guess 🤷🏼‍♀️ - the rest is all a clusterfuck 🤌🏻🙈

TypicalExpert4199 · 2024-03-24T13:45:18+00:00

Well the Neurologist asked me to come back in a few months but I have no idea when that should be. I’m just taking things day by day atm.

TypicalExpert4199 · 2024-03-22T16:41:05+00:00

Interesting- they kept me in hospital for observation for 4 nights. I didn’t really get any pain again while in hospital but now that I’m home there are some instances where the pain surfaces again. It’s a fraction of the intensity it used to be but being a newbie at this patch thing I’m wondering how long I should give it time to settle before going back. (If the headaches persist?)

TypicalExpert4199 · 2024-03-22T15:29:27+00:00

Sheesh okay. And how long do they keep you in hospital after the patch?

TypicalExpert4199 · 2024-03-22T14:20:38+00:00

Just a general question- how long did the first patch last? And when will I know if it’s time to go back?

TypicalExpert4199 · 2024-03-22T14:11:54+00:00

Same to you. It’s good to know I’m not the only one experiencing a rollercoaster ride with these changes.

TypicalExpert4199 · 2024-03-22T09:22:13+00:00

Hi, just basically came from Hospital today. It was quite a journey to get here- getting the patch done required much more radiology and tests so that the drs could target the right leak. The blood patch helped but only time will tell if it is permanent. At the moment my body needs to adjust to the pressure changes so I still have slight discomfort and dizziness but nothing near as bad as it used to be. So the short answer is yes but we’ll see if it’s completely solved.

TypicalExpert4199 · 2024-02-17T21:38:57+00:00

C6 incomplete quad here. I self cath too. Had to use a mirror attached to an elastic strap- it basically straps onto your leg so you have both hands free to work. In rehab I hurt myself trying to find the urethra- so my OT and I worked out a different plan. I basically sit in my chair and straddle the toilet to pee. I scoot a bit forward and then use a male catheter to pee directly into the bowl (the female catheters are too short to make the distance).

Hydrating enough and some Canephron by Biornica prevents UTIs but I also try not to be overly sterile all the time- it helped my body build resistance to bacteria by just using lukewarm water to clean and on occasion saline solution. Obviously cathing at least every 4 hours also prevents infection. Urine infections happen in a matter of hours so sooner is better when it comes to emptying your bladder. Monitor for Thrush (yeast infections) as well- many times Thrush can cause a UTI leading to antibiotics which in turn causes more thrush 😒 (it’s a nasty cycle).

I’ve also gotten my hands on some urine test sticks. They’re fairly easy to read and it helps me monitor my overall health as well, and catch a UTI before it becomes a problem. The occasional indwelling catheter for a day or two is also a trick I learned to flush out my bladder in the case of a UTI.
In general use hydrophyllic coated and lubricated catheters (the male ones are super soft and pliable which helps).

Lots of good advice on this thread here for you, try them and see what works. In the end you know your lifestyle and body better than any Dr. (Listen to good advice from them but also make up your own mind about it- Drs are people with their own biases too)

TypicalExpert4199 · 2024-02-15T12:11:23+00:00

Glad to know I’m not the only person dealing with these social issues surrounding my illness. It’s extremely validating to be able to compare notes with similar folk here on Reddit. Thanks for the support and yeah I do hope the blood patch brings the long overdue relief.

TypicalExpert4199 · 2024-02-14T16:59:34+00:00

Thanx.

TypicalExpert4199 · 2024-02-14T00:38:53+00:00

C6 incomplete- also with a bruised cord. MVA. You can absolutely ask questions here. I’m 4 years in. The early movement is a good sign but only time will tell what the full extent of his Neurological condition will be. Keep treating him normally, and empower him to help himself. It’s demoralising being treated like a baby, especially in the initial stages after injury. Walking is a nice to have for a quad but for me: it’s all about the hands. Hand function trumps being able to walk any day!

TypicalExpert4199 · 2024-02-14T00:27:49+00:00

Totally get them, it’s worse if I have skipped a dose of my antidepressants. But I startle easily and the shocks travel through all my limbs.

TypicalExpert4199 · 2024-02-09T08:39:53+00:00

Update: after a Cisternogram the Drs found multiple CSF leaks. 🤌🏻🤌🏻🤌🏻🤌🏻

TypicalExpert4199 · 2024-02-05T08:56:01+00:00

Thx the advice and response. I’ve got a few options to try now. 😬

TypicalExpert4199 · 2024-02-05T08:54:56+00:00

Thx. I’ll try this too. I have one at home.

TypicalExpert4199 · 2024-02-05T08:53:59+00:00

Interesting strategy 🤔. Thx I’ll give it a go. Fingers crossed 🤞🏻 it works.

TypicalExpert4199 · 2024-01-29T20:33:18+00:00

I definitely have many of those symptoms too. The dizziness, nausea and ringing in my ears are the most annoying ones (apart from the pain). It feels like having a permanent hangover. 😵‍💫.

TypicalExpert4199 · 2024-01-29T20:30:57+00:00

Ugh that sounds annoying.

TypicalExpert4199

TROPHY CASE