I am eight months post decompression and was wondering if this strange feeling will ever go away. I also have a shunt, anyway I feel like I am operating with a different person's brain. It is very difficult to describe so I hope you all can help me put words to what I am trying to say. I feel like I have never regained my center...looking for words to describe this. For instance, I try to drive and it feels as if someone else is driving. Quite scary, not as if you are a newbie to driving, just a feeling of disassociation that lingers. I also have slight short term memory issues. This makes it even more difficult to drive, because you suddenly "remember" you are driving. Like a quick disconnect. Even when I am not in the car, I constantly feel as if my brain is trying to connect to my body but is having difficulty. I am 90 percent better than before surgery, yet I have been unable to regain my independence. I do not want to drive my three year old around. My husband is going overseas for a long period of time, and I am relying on my parents to help me. I hope that you all can offer me your experiences, because I am extremely concerned that this may be my new "normal." It pangs me to think that this is as good as it gets. I have come a long way, but am hoping for my life back.
Your response made me smile. It is like the world is surreal, as you said. I am eight months post op and no change yet. The neurosurgeon and shunt specialist have no insight to offer me other than this may be the new normal. Vestibular therapy is not really an option, due to the c1 laminectomy. My head cannot be adjusted or manipulated, because of the cervical instability issue. I recently had a shunt placed a few months back for recurrent hydrocephalus. My ICP monitoring is now coming back with a normal amount of spinal fluid. I have just about exhausted all the options. Thank you for your encouragement, it is nice to speak with people that have the same things going on. How are you doing otherwise?
Hi !! I know this is very stressful for you. No matter what we go through, we always put our children & their safety 1st. Did your Neurosurgeon explain to you that you will continue to have symptoms Post Op & that surgery is just a treatment to open & correct your CSF flow & to correct any malformations of your skull & C-Spine? Surgery unfortunetly does not cure us. Memory issues are very common. I would recommend that you see a Neurologist and discuss your concerns of disassociation with them. I have read many links trying to find one about Chiari & physical & mental disassociation. Are you on any medications? I ask because when I took Neurontin & Topomax I would drive to work & could not remember the trip or would like snap out of a daze & realize I was actually driving. I haven't had one since I quit taking those medications that I can recall. Please know I understand & wish I had a concrete answer & solution for you. I did include the link to probably the best symptom list I have ever read. I really think you need to see a NL, if for no other reason than to explain to you why this is happening. Please keep in touch & let everyone know how you are doing. I am very interested on what you learn & wish I could help more.
Sorry it took so long to respond, I was without internet for a few days. I appreciate the information. Emmaline, oddly my symptoms are worst at night. The longer I am up the worse off I am. It does feel like sensory overload to drive. Like you, Tracy, it is like being in a daze. Topomax and propranolol both nearly took me out. I would be very careful with these meds. Topomax caused metabolic acidosis which is highly dangerous and landed me back in the hospital. I am only taking a few meds: ativan (low dose), antivert, remeron, and occasionally fioricet. The symptoms seem to be aggravated by the TONS of meds I ended up on. Tai Chi sounds like something I might try, though I still fall forward when I bend my head down. Do any of you have this problem. Everytime I wash my face in the sink, my whole body starts to topple forward lol. Oh the fun! Another question...my long term disability company is referring me to Social Security Disability. Have any of you had success? Thanks for being a great bunch of supportive people!
Has your LTD been depleted? If not stay on it as long as possible. It usually pays at a higher monthly amount. Do you have health insurance? As long as you are on LTD you cannot go on Medicare. I was approved the first time I applied for SSD. I did have to have a Psychological Exam by one of their Psychologists. The only problem I had with SSD was they approved my starting date incorrectly. I had to go back & appeal that & won & got two additional years worth of SSD. That was great. Social security Lawyers are wonderful. CM is an approved diagnosis withe the SSD. I am sure your lawyer will get it approved.
I also have problems bending over, especially when my eyes are closed. Tai Chi is relaxing & helps you feel centered, but I couldn't do a lot of the moves because I have had a rebuilt C Spine. I also can no longer do Yoga, which I loved. Basically the only physically activity I can do is walk in a warm pool. They have warm (Arthritis Assoc pools) at YMCA's. They have very low Membership rates for anyone with a disability. I was a competitive swimmer and diver and played ever sport & worked out daily pre Chiari. It makes me very sad about my physical limitations.
Please let us know how your SSD is coming along & how you are going,
Hi guys. I have been away for a while, my husband is in for a month long visit before he leaves the country for the next fifteen months. My goal has been to spend as much time with him as possible. Currently, I am on long term disability through my employer. They referred me to Genex corporation and the lovely lady there is responsible for winning SSD for me. I have been out of work since last November, and with all of my conditions she does not think it will be a problem to win. Tracy, I understand where you are coming from. I also have PA, an autoimmune arthritis. Though I struggled with it for the past 15 years, the Chiari really did me in. It also makes me profoundly sad that I can not, and never have been able to do all the things I want to do. My situation causes me great pains. After living with my mother for the last three months, my husband has moved my daughter and I to an apartment. Scary...I have no clue what I am going to do. At least family is within a few miles of us. Even so, I am scared to be left alone with my toddler. A week ago I had an appointment with my shunt specialist. He offered no help. Shunts have limited settings so I am stuck with being overdrained a few hours into the day. I suppose it is better than losing my vision, again, from high ICP. I HATE Chiari and the things it has taken away from me! At least I have you all to understand me.
I stumbled across your post when trying to search for my own answers. You describe exactly what I am feeling post op. Did that feeling of surreal disconnect ever get better with your recovery? I realize this thread is quite old, but incase your still active on this site, I thought I’d ask. Looking for some hope. Thank you!!
Yes I ended up on Social Security disability. Mainly due to the fact I still had migraines and I have short term memory loss. It took hiring a lawyer to get it, but I eventually did. But you always need a lawyer. My sister has a long list of medical issues, severe ones, and she had to get a lawyer.
What you are feeling is characteristic of what we have and it was part of my life prior to my decompression which improved my life considerably, but I still have that disconnect. My surgery did not take place until just before I turned 52 and up until that time my internal dialog got me by.
We have to be cognizant at all times and coach our way through our days. We are very capable we just function differently as do our systems and I highly recommend a doctor of internal medicine for your primary care. They are much more apt to be willing to tend to the special needs we may have.
Mine sent me to the Mayo Clinic in, Rochester, Minnesota and I was told this July that the disconnect I have with my body is not something they can help with at this time and he recommended my primary care doctor (internal medicine) possibly try Cymbalta which I have just started. It has helped me to feel my feet and the outer parameters of my body. It is still new at this time but I am hopeful.
Be wary of to much caffeine and I have trouble with too much niacin which naturally dilates blood vessels. I was told at Mayo to stay away from overexerting myself with exercise; I had been biking a lot and did give it up.
I grew into this condition and learned along the way to naturally compensate and continually coach myself. A year after my surgery I went to college and did better than I ever did in high school and this was while I worked full time. I do not always feel the greatest, but I do feel better.
Last but not least; cool packing the central nervous system helps.
I had decompression surgery almost three years ago and doing great now but the first 5-6 months I had Friends and family say that I didn’t seem myself like the spark was taking out of me. I was very spaced out didn’t talk much and that wasn’t me. I’m avery lively person n out going. My memory was impared also. Which it wasn’t great to begin with. It took me a good year to feel like myself again. My memory is a little better now thanks to doing brain building activities. Doing puzzles and things like thst to build up my memory. There’s some great apps for this as well. I also took a herbal medicine from the local GNC store called brain formula which seems to help. I actually still take it daily but check with your doctor first before trying any herbal remedies. Hope this info helps you. God bless!
Thank you!!