Hi everyone ! I have been diagnosed with a 35 mm and large syrinx last week. Surgery is May 8. How I found out was by chance . I had major ringing in my ears at 2 am about a month ago , I got up went to the bathroom , had chest pains and passed out. I also vomited and lost bladder control , this happened twice that night and called ambulance . All tests came back normal EXCEPT … ct scan found the CM. Had my MRI and need surgery . What a life changing event . I have a 3 year old active boy and I’m 45. This is too much to handle . I’m very independent and can’t rely on others . Suggestions ?!? Also, I am very active and a personal Trainer. Can I get disability??
Tooka1972 what a life altering time, my thoughts are with you. It must be quite overwhelming trying to process everything in the short amount of time you have known about your condition and up and coming surgery.
I wish you a smooth lead up to, and recovery from surgery. None of us like having to rely on others for help, we value our independence and freedom. Be kind to yourself and try to stay open to accepting help. This is something I found very difficult to do and was pleasantly surprised how supportive some people were. I try to remind myself that this is my time to accept help and that’s okay. If I can focus on me for a while and take care of me now, then hopefully in the future I can continue to give back.
Welcome and it sounds like your journey is fast tracked to surgery. Mine was too. Finding mine was a fluke and from the point of discovery to surgery was about 10 months. I am a marathoner, avid trail runner and mom to a very medically needy special needs teen. I am incredibly independent and relying on others was humbling after surgery. You will need help and must allow others to help you. The first week to 10 days is painful and it is so important to rest and take time to heal. You have to allow the incision to set and scar up. My surgery was Oct 24 this year and I am back to running and getting ready for a Ragnar Relay and have several half marathons coming up this summer. Take care and it is critical that you rest and heal in the first 8 weeks or so. Allow others to care for you. I am symptom free, with the exception of the residual nerve damage in my back from my syrinx. Even that is 100 fold better than it was a year ago.
That is a lot of things happening at one time. Did you have any other problems prior to this one time occurrence? I hope you will be able to accept help from others. You will need to be patient with your recovery. I had surgery in 2014. In my case, I had ongoing symptoms for about six years prior to being diagnosed. Unfortunately, a lot of damage was done to my nervous system. So much, I’m in assisted living. I’m still able to walk, but the neck pain is horrible. I hope you have a good surgery and a swift recovery. A lot of people do great and return to a normal life. Just know, there are a lot of Chiarians that will support you through this journey. Let us hear how things go.
blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Thank you for your response! It’s like I’m still in disbelief …
blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Thanks so much! It is tough😞I’m worried … may I ask what meds you take for pain? I’m not sure what is working, as I don’t usually take them .
Thanks !!
blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Thank you so much for the response! Yes, it’s been tough. Having a 3 year old active boy is especially hard😞… what are your symptoms ? Also, what meds do u take ?
Thanks 
My symptoms when I was diagnosed were a never ending headache - and not really a headache perse with a ton of pain. It was more of a severe pressure and I felt like my head was going to pop off my neck like a champagne cork. My ears sounded like the ocean roaring through them all the time. I had 2 spots in my back on my spine that were also under severe pressure and no one could touch me there. I wanted someone to kick me in the back and break it to relieve the intense pressure. My feet kept going numb and my eyes were all bugged out too. I didn’t take anything. I struggle with taking medicines. It is just the way I am. They wanted me on anti depressants and opioids and I refused. I just kept running as that was about the only time I felt any relief. The surgery saved me. I am pretty much symptom free. The pressure is gone, my syrinx are resolved. I have some nerve damage where the syrinx were and will always have that. Everything else I was experiencing was gone within 24 hours of surgery. My recovery was brutal as I had a reaction to the anesthesia. I have allergies to most anesthesia and this was no exception. Once I got past the complications my healing really took off. It is imperative you find help and make sure you rest those first couple of weeks. You don’t want to damage the surgery site or put any stress on it at all. My ex husband took our son for 3 months so I wouldn’t have to worry about how I was going to manage him. My mom came and stayed and my older daughter helped every day. I had friends pay for 4 months of housekeeping and the community I live in put a Meal Train together for me. Accepting help was the most difficult thing I did, but I had to, especially with my complications due to the allergic reaction I had and the subsequent complications. I am not on any meds at this time either.
I walked around in a daze after they told me I had the 2 Syrinx and needed surgery or I would end up in a wheel chair. That was August last year and surgery was Oct. They had wanted me to have surgery in Sept but it took me a bit to get some things in order. I do know someone that is a personal trainer that had the surgery 13 years ago. She is still a personal trainer, active and feels like her surgery was a success. The statistics are not that great, but for me it was just not optional. My surgeon was Michele Chowdhary at UW Nuerosurgery and she was/is amazing.
blockquote, div.yahoo_quoted { margin-left: 0 !important; border-left:1px #715FFA solid !important; padding-left:1ex !important; background-color:white !important; } Hi,
I was diagnosed with carpel tunnel like 8 years ago , but it wasn’t bad that was it. I also had a neck ache for the last 2, years , thought it was from working out .but had no other issues until now , that’s why I am still in awe that all this happened . It’s like it’s not even real . Now it’s ringing in my ears, numbness, neck and headache ,pressure, memory loss is terrible. I just have never relied on anyone for anything, it stinks. When were you diagnosed? What were your symptoms ? I just hope I can receive disability as I can’t work. Are you in a wheel chair at all?
Thanks
Jenn
Thanks for your reply ! Did you go to a specialist?? How long were you out of work ? If you did work? I’m a single mom and with my 3 year old I don’t have any savings , and have bills . I hope I can get some disability .
Where I live in NC, there is only one specialist and he’s pediatric . I have heard good things about my surgeon I have had 2 opinions .
Jenn
@Tooka1972 I suspect you will have a good outcome from surgery. Disability is a tough one. I would apply immediatly Even if you are turned down initially as they will likley not deal with it until after surgery rehab etc. The application date would be the start date of disability. so would recieve back pay should you have a delay in relief post surgery. The biggest problem you will face is you are in that gap age and may not have enough paid in to qualify even if disabled. Sadly a lot of personal trainers have worked as independent contractors and not paid in their self employment tax… O would immediatly contact your state vocational rehab. They have funding available to help with rehab and attempting to get you back to work. IF that can’t be accompllished it can save months in dealing with SSA. Good luck with all
Yes, my surgeon is a well know specialist and people travel all over from West of the Mississippi to see her. She was so honest with me, took the time I needed an laid it all out for me as far as options, including what to expect if I chose not to have surgery since I know the odds are not super great. I have my 6 month follow up in the next couple of weeks. I was able to talk to former patients and I really did my research and felt very comfortable with her. She didn’t even shave my head. She uses a method of braiding the hair out of the way. She also used no man made parts on me except the dissolvable stitches. My durapatch was a piece of my scalp. I did not require a shunt and I think my case was pretty straight forward. There were no issues with my arachnid membrane and the nerves in my spine had not tethered so everything was very textbook. The only part that wasn’t text book was my recovery. She told me she expected surgery to be close to 4 hours and it ended up being 2 hours and 45 minutes or so. I did get temp disability during my time off. I have temp disability through my employer. I was off work for 2.5 months and went back part time and am now back full time and back in school full time.