I appreciate your time to reply to this thread. It’s fascinating to learn how varied symptoms, surgeries and recoveries can be for each person. And it is clear, we the patients may have to be the ones to educate doctors on this condition.
I have neck and back of head pain daily. Ears feel like there is hot liquid in them, hearing is dull. Achy, heavy shoulders and biceps. Numb, tingling hands and fingers. Spells of slurred/stuttering speech, problems with word finding. Balance is off and dizziness, particularly when surrounded by a lot of noise(the salon, or the store) Spells of feeling emotionally overwhelmed at a lot of visual choices (EX…lettuce section at store, color tubes at work, menu selections).
I’m optimistic that surgery will alleviate much of my discomfort. How long I will need to be out of the salon remains to be seen. I’m not going to worry too far ahead of myself. I lean on my faith, and know if one door closes in life, it simply means it’s because God has something better planned for my future. Thank-you for your well wishes and advice. I’m glad I found this place! Best wishes to you all as well.
Everything your describing my son had but so much worse. I think you'll find that surgery will alleviate a lot of your symptoms. By the neurosurgeon putting your brain back up where it belongs takes a lot of pressure off of the area where it shouldn't be. Patients who are severely symptomatic should really consider surgery. Just taking meds is a band aid and doesn't help or fix the fact that your brain is not up in the right area it is meant to be. I hope one day a cure is found so no one has to suffer with Chiari. My son was born with his and I wonder all the time how this happened, why it wasn't found in ultrasound, what could have caused it during development, ect, ect... There was no other option for him except to have the surgery. He was so bad that it would have killed him. I wish you much luck and please let us know how you make out!
Karen I fully agree with you they don't tell you what the out come after the surgery is I suffer from neck pain and the back of my head hurts I had some botox injection done last Thursday I have had a small head ache but still suffer from the neck pain and headaches in the back of my head
Karen said:
I've been on disability for 4yrs now. After my chiari surgery I feel worse. What they don't tell you is that when they take most of your c1 vertebrae off its hard to even hold up your head up. My neck pain is worse and my headaches no better. Good luck to you
I fully agree with you on this comment I think we just live day by day when I get out of bed in the morning I don't know what kind of day its going to be could be a good one or a bad one unless you have this disease I believe people just don't understand what we go through, this is a rare disease and I think there should be more studys on it
y1323 said:
I read someone's response but how Misunderstood this disorder is. That is so true. We all suffer from so many different symptoms some that come and go some that stay but there's always something that is wrong. It is difficult trying to explain to someone what it is you have and how you feel. To an outside person we look normal, but we never feel normal.
I understand what you are talking about my surgery was 2 years ago I have so much pain in the back of my head and neck all the time and noise I cant not hardly stand loud restaurants I prefere not to go to I have 6 step grand kids when they all come over sometimes I have to go to my room and shut the door cause of the noise.
@goingcrazy - I cannot noise or lights either. It was this way before the surgery and has not gotten any better. I avoid crowds and noise at all cost. I could easily become a hermit!
How do you guys handle the nausea? It really starting become a problem.
I would make sure that your NS evaluates you for other conditions like EDS and POTS before doing surgery. If you get the all clear then it is possible with surgery you'll be able to return to work. It will take time. I had surgery in Oct. 2012 and I can do things now I wasn't able to for years before surgery! This is even taking into account that I have an arthritic condition in my spine and SI joint that slows me down. So don't give up hope! :)
Good question! I had decompression surgery 14 months ago. I had lived with knowing Chiari diagnosis and a syrinx for 19 years before braving up to surgery. I still worked full-time as an HR executive but it was certainly getting challenging. Post surgery (maybe because I waited so long) I felt like a million bucks. I returned to work f/t after 8 weeks, started going to the gym and kept improving. I seemed to plateau at about 6-8 months and have been struggling to regain momentum since. I'm still working and going to the gym and have lots of mental energy. The problem is still lack of physical energy and strength. I am fortunate to not have the symptomatic pain, but what you lose by postponing surgery is hard to get back. Aging probably doesn't help either, though at 48 with a kid in college I can't afford to not work. So I push on.
I do find that during less stressful times at work and when it's a normal work week, not 50+ hours, I am much better.
I am an advocate that our minds help Chiari a lot. If you have to work, doing what you like and being around people that are positive and happy help to relieve stress. Relieving stress seems to help Chiari. I am in the process of looking for a new job right now. That is stressful, but I'm hopeful the outcome of going to a lower impact environment will help.
Good luck!
I am a bartender. I worked up until January. It was more than I could take and I was down to 2 shifts (albeit doubles). My surgery is tomorrow. There is just no choice. My symptoms progressed so fast. I have no quality of life or any way to support myself. I also wish this was caught earlier in life but there’s nothing I can do now but to think positive and push forward. I can’t tell you I’m not terrified about tomorrow, but I also figured I had some good years left in the business. Maybe taking tables so the hours are kinder! My advice is to be militant about finding the best NS and neurologists whether you feel surgery is right for you now or not. You must stay on top of this. Don’t wake up one day and find out you have a massive syrinx and other complications! Best wishes! You came to the right place to be on the right track. - TracyJessica
call your dr and ask him for some Zofran it helps
Hope said:
How do you guys handle the nausea? It really starting become a problem.
mine was not that bad before the surgery I could handle it but since the surgery noise lights sometimes I am scared to drive sometime yes crowds is no good for me I was talking with my dr about this and he told me that my brain was getting overwhelmed. ya me to but I try my best to do what I can do. I am originally from moore ok I have been in Houston for 5 years now I used to just get in my car and drive to Oklahoma all the time all my family is there but since the surgery I don't do it anymore I start to get bad neck and back pain and head aches by the time I get there I am sick its like a 7 hour drive I miss my family.
BigD821 said:
@goingcrazy - I cannot noise or lights either. It was this way before the surgery and has not gotten any better. I avoid crowds and noise at all cost. I could easily become a hermit!
I am the same about loud noises. It has just started that at restaurants if too many people talking is very annoying. I sometimes can't tell if I am talking loud enough for people to hear me. It is amazing the things we live with because we think it is normal.
I am an RN and at this point not working. Had surgery last June and went back to work 8 weeks post-op. Had to take a personal leave in October due to return of symptoms and numerous falls. Went back to work in after thanksgiving and now off again as of January 27. Symptoms are elevated, head pressure and migraines, near fainting spells and much more. In physical therapy for balance due to failing CNS portion of ENG/VEMP test for balance, getting occipital neurostimulater for pain April 16, also diagnosed with idiopathic intracranial hypertension, being evaluated by cardiologist and waiting to see rheumatologist for EDS. Just told by the company for short term disability after receiving my first check finally after being off work for over a month they have to determine if my illness qualifies for the time my NL has me off which is May 5, my NL also said if no change in health no more work. So I am awaiting decision from SSD also.
Thank you for this wonderful discussion Yoga Girl!!
I used to work as a portrait photographer, and run around doing event planning, but I can't do that anymore. I have many of the symptoms you explained, so I now work in an office. I am blessed in that at this point I can still work 40 hours a week at a desk job. The future is scary though. I live alone and support myself, so there are many uncertainties ahead.
Best of luck in your journey!
Very informative. I have read on “IIH” and now that I see this again, I’m going to definitely bring it up at my appointment with the neurologist next week. I was told about applying for SSD by a nurse and then by a doctor. It had not even crossed my mind, but definitely worth the time and fight. Today I can’t do nearly half of the things I used to do, from the outside I look like a perfectly healthy looking 29 year old, but on the inside I feel badly beaten. My best to you on SSD, as we all are struggling to tell the world on our invisible disability.
Melanie said:
I am an RN and at this point not working. Had surgery last June and went back to work 8 weeks post-op. Had to take a personal leave in October due to return of symptoms and numerous falls. Went back to work in after thanksgiving and now off again as of January 27. Symptoms are elevated, head pressure and migraines, near fainting spells and much more. In physical therapy for balance due to failing CNS portion of ENG/VEMP test for balance, getting occipital neurostimulater for pain April 16, also diagnosed with idiopathic intracranial hypertension, being evaluated by cardiologist and waiting to see rheumatologist for EDS. Just told by the company for short term disability after receiving my first check finally after being off work for over a month they have to determine if my illness qualifies for the time my NL has me off which is May 5, my NL also said if no change in health no more work. So I am awaiting decision from SSD also.
I work at a world-banking call center in front of a computer all day. I don't have a manually-physical labor job but the phone ringing, people talking in my ear and looking at a computer all day doesn't help my migraines at all. I have been on intermittent FMLA since Dec 2013 and can use a certain number of days a month to call in without having to worry about being fired. However, with that said, there is a limit to that so I have to, like other probably do, judge which days are bad enough to use to call in. I'm new to the forum so I look forward to reading other's responses on here about their own jobs and how they relate. Good luck to you and with your treatment. Keep us updated as to what happens.
I have been effected by chiari,I owned a small salon for 15 yrs. and had to give it up 5 yrs. ago.I had to sit and work as a nail tech and as my chiari progressed it got to be more than I could take.Chiari made my shoulders ache and I also found it hard to be stressed too.This condition does make holding a job very hard at times.
This is enlightening. My boyfriend says I "yell" at him when I try to talk to him. I don't think I am being loud at all. It is VERY frustrating. All of it is.
Hope said:
I am the same about loud noises. It has just started that at restaurants if too many people talking is very annoying. I sometimes can't tell if I am talking loud enough for people to hear me. It is amazing the things we live with because we think it is normal.
I am a hairstylist of 17 years and just recently found out I have Chiari and also POTS. I am trying to manage with meds and get through each day as it comes. I schedule a lot of time for each client, do not double book, and rest during colors. I am 34 and hoped to be doing hair for a good long time, but I am trying to be realistic about whether or not this will progress. If I get worse I will have to consider something else but right now my symptoms are tolerable. I do have a cutting stool that I invested in and it helps towards the end of the day. I have a 3mm herniation with reduced space for csf flow, but still HAVE csf flow so as of right now I am taking a wait and see approach.