The last couple of days have been extremely difficult. Working full time again, for the first time in over 5 years, is really taking its toll. Some days I wake up feeling horrible-like I never slept. This past Friday was one of those days. I have some days I wake feeling rested and fine. On those days I can function until around 1pm. I literally get so exhausted it is like I am walking around in a trance. My limbs get weak, head, neck and shoulders hurt like crazy! I’ve also notice one of my eyes start to droop. That is just to name a few. By the time I get home from work I am done and all I can do pretty much is go straight to bed. In the past I could usually get myself together after I nap. Lately, it’s getting more and more difficult for me to bounce back. Today was one of those days. I have appointment with neurosurgeon on Wed. I have already decided the surgery is out and didn’t even want to go to the appointment. My neurologist talked me keeping the appointment to just see what is recommended. Not only am I just having a miserable time and need to vent, I do have a few questions. I understand this thing affects everyone differently, but just need some idea on what I may be facing from those who are living this life.
Is there anyone with CM 1 who has opted not to have the surgery, at least not had it yet?
If so, are you able to manage a full time job?
Any suggestions?
I am hoping to get some responses, but just writing this seems to have given me a sense of release. Anything you have to offer will me an extra plus to me knowing someone is listening and understands what I am going through.
I was diagnosed with CM1 in April and confirmed in May. I have actually already had the decompression surgery. For me, it was the best thing ever, I am doing amazing. I am not having most of the symptoms I had before, I feel good, everyone says I look good, etc. Sure, I have some issues but most of them are surgery recovery issues, not CM issues.
I will eventually be working full time again. I have just been released to go back to work part-time. I'll do this 2-6 weeks and then go full time.
I just wanted to say that the surgery is not all bad. It really was the best thing for me. But every Chiarian is different.
New2, im glad you are keeping your appointment with the NS, just cause you need to know what your whole situation is, like do you have a syrinx? Sleep apnea? From all the research I have done, most people are able to “wait a see” with surgery- it becomes a personal choice. There are a few who do need the surgery, though and it becomes dangerous to wait.
Many of us have had luck with adding OTC items to our routine- helps pain and fatigue.
Higher doses of Vitamin D3
Magnesium
B vitamins (have your levels checked)
Arnical gel or cream to back of the head and neck and shoulders
Give it a week and see if you start to feel a difference.
Thank you for taking the time to reply! I decided to face things head on and at least follow through with my neurologist's referral to the neurosurgeon. My neurologist is awesome and doing a thorough job of investigating my complaints. She noticed the bulge on my neck while completing a preliminary physical exam and referred me to an endocrinologist. She has also completed a long list of blood work. Everything came back within normal limits and she only recommended that I take a multivitamin on regular basis. I have to admit I've not been consistently taking it. I will do better. I never considered that I may have sleep apnea. I have experienced episodes of what felt like I inhaled water into my airway. I have been jolted from my sleep in a fit of coughing and gasping for air. Prayers were answered and I have not experienced an episode in probably over a year. That was very scary. Apnea may be a possibility and I will look into this. I may also try the Arnical gel-I've Googled it already. I've never heard of it. Actually, the thought never even occurred to me to apply any type of pain relieving cream to my neck and shoulders! I use OTC meds like Excedrin, Aleve, and Tylenol. I try to spread them out and only take when the pain is too much to bear or when I need to relieve the pain in order to work. I am also on low dose of Neurotin. I've only been taking for a few weeks and not reached recommended dosage. As of right now, I can't see where it is helping any. I will let you know how my appointment goes. Thanks again!
Thanks for such and upbeat and positive response! I guess I am putting the wagon before the horse by totally discounting surgery since I have not even seen a neurosurgeon and surgery may not even be recommended.
I am happy to say I am feeling some what stronger today than yesterday. I am still in pain, laying on heat pad as I type, but I do not feel as low in my spirit as I did yesterday. I think sometimes the pain and ailments can get the best of my emotions. I am not sure how to post a reply, so I will try to address all in one. I really wanted to address everyone, so please forgive me if I've overlooked something. I am scheduled to see the neurosurgeon tomorrow and will post to let you all know how it goes.
Hi Abby,
Dysautonomia-don't think I've heard of that one before. Thanks for all the details. I've looked in the Ehlers. Will spend more time on the Dysautomonia. Wow! There is just so much out there. No wonder some doctors seem confused. I think sometimes it is just easier for them to throw a couple of pills our way and hope something works. Thanks for the comforting words of understanding. I really needed to hear that.
Hi Jenn,
Thank you for taking the time to reply! I decided to face things head on and at least follow through with my neurologist's referral to the neurosurgeon. My neurologist is awesome and doing a thorough job of investigating my complaints. She noticed the bulge on my neck while completing a preliminary physical exam and referred me to an endocrinologist. She has also completed a long list of blood work. Everything came back within normal limits and she only recommended that I take a multivitamin on regular basis. I have to admit I've not been consistently taking it. I will do better. I never considered that I may have sleep apnea. I have experienced episodes of what felt like I inhaled water into my airway. I have been jolted from my sleep in a fit of coughing and gasping for air. Prayers were answered and I have not experienced an episode in probably over a year. That was very scary. Apnea may be a possibility and I will look into this. I may also try the Arnical gel-I've Googled it already. I've never heard of it. Actually, the thought never even occurred to me to apply any type of pain relieving cream to my neck and shoulders! I use OTC meds like Excedrin, Aleve, and Tylenol. I try to spread them out and only take when the pain is too much to bear or when I need to relieve the pain in order to work. I am also on low dose of Neurotin. I've only been taking for a few weeks and not reached recommended dosage. As of right now, I can't see where it is helping any.
Cole,
Thanks for such and upbeat and positive response! I guess I am putting the wagon before the horse by totally discounting surgery since I have not even seen a neurosurgeon and surgery may not even be recommended.
Rebecca, I totally get what you were saying about people abusing benefits. I see some of it in my work as well. I too would like to work for as long as I can. I have been dealing with these symptoms for the past 12 years. During that time, I simply did what I could to take care of myself, maintain my home and keep some fragments of a career I worked so hard to build. I have always lived well below my means. This has allowed me to work part time in the past. With the economy and my change of fields, it is not so affordable any more. If I had children to support I do not know how I would have made it financially to physically. It is great when you have a children to motivate you to give them your best.
Thanks again for taking the time to reply and share your experiences. Each and every word helps!
Prior to my surgery (when I was not diagnosed), after years of successfully working at a fast-paced, full-time plus career, I was not able to work fulltime and my employer was not willing to put me at part-time. I was fired/quit as I was not able to do my job. I lost benefits/pension/long-term disability...and a good working-relationship with my long-term employer. It was not a high point in my life leaving my job but I could also not give every bit of energy to my job and collapse with fatigue at home. Good luck in finding balance and an understanding employer while enduring chiari with its ups and downs.