I’ve been a member for several years and had decompression surgery in 2011 was doing pretty good now I’m back to square one I feel like! I’ve had pressure in my ears and eyes my head feels like it’s in a vice! The doctor just says he don’t know because I’ve already had the decompression surgery! I’m getting electrical shocks sometimes from my neck through my arms and my neck is killing me again like it used to prior to my first surgery! My body hurts all over and my vision is blurring our real bad. Im having brain fog real bad and I feel like I’m losing it! They are sending me to a neuro othomologist Wednesday! Any advice? Also I don’t know if I can keep working and pushing my self feeling like this and one have info on if I might qualify for disability? I’m only 42 but I feel 82!
Hey Deena! Sorry you're having problems. I was four years older than you when I had my decompression. My doctor said he had hoped everything would float free when the pressure was released but it didn't. So he ended up putting in a vp shunt and that made all the difference. Shunts come with their own special problems but I don't know what I would do without mine. You might have your doctor do a CINE MRI (did I get that right everyone?) to check if your CSF flow is good.
Take care and God Bless,
Grandma Carol in Las Vegas
I'm 39, 40 in October, and had my decompression along with a laminectomy two years ago on the 31st of this month. I know how you feel. Since last September I have had burning sensations on my outer extremities, heat sensations on the back of my legs and arms, and pins and needles on the front of my legs and arms. My vision also becomes blurred and eventually doubled depending on my level of activity. Mind you, I have had other issues such as POTS, issues with balance, issues with not being able to stabilize my body temperature as I have low grade fevers a few times per week, permanent numbness on my fingers and upper feet and legs and tip of my tongue. I am not as sharp as I once was and I forget things a lot. My husband's 96 year-old grandmother can out last me during family functions. It's sad, but I try to laugh about it and joke with her about it. My doctors are willing to prescribe the strongest pain killers, but that is not what I want. I have been given hydrocode and patches that are even stronger than that. I have tried botox injections all over my head and neck because my pain specialist stated that it helps, but the pain was only gone for about two hours when it should last weeks or months. Now I'm on the highest dosage of gabapentin, which is a medication for fibermaiyalgia. It has lessened that nerve pain, but it doesn't get rid of it. If I push myself, the pain increases and I get the chiari type headaches. Once that happens I'm can't function for a few days much less think properly.
I qualified for disability under Syringomyelia using the Social Security Blue Book section 11.19 and subsection 11.04. There isn't a section specifically under Chiari, but there are several sections that the symptoms could fall under. Below is the link for you to explore. With the chronic pain comes fatigue for me. There is a section in there for fatigue as well.
Given that this condition is so rare, many doctors are not aware of the proper care of a person with it. My neurologist and I have gone rounds because of this. I had to bring her the research on POTS and Chiari in order to get a referral to a cardiologist. I was just officially told this summer that I have POTS, but I have been telling my doctors that I have it for the last year.
I wish you the best. With this illness you have to be your own advocate.
http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurological-Adult.htm
U sound like me! I am having so many problems right now I am in so much pain that some days I don’t even want to get out of bed. I am on pain meds that don’t work. I also feel like I did before I had my surgery I am waiting to see a doctor in Ohio and I live in Alabama so I am praying he had the answer to so of my questions…
Grandma Carol said:
Thanks for the reply! I have an appointment with a specialist in Houston Dr Kim that is supposed to be very good I pray I can get relief!Hey Deena! Sorry you're having problems. I was four years older than you when I had my decompression. My doctor said he had hoped everything would float free when the pressure was released but it didn't. So he ended up putting in a vp shunt and that made all the difference. Shunts come with their own special problems but I don't know what I would do without mine. You might have your doctor do a CINE MRI (did I get that right everyone?) to check if your CSF flow is good.
Take care and God Bless,
Grandma Carol in Las Vegas
retiredat38 said:
I'm 39, 40 in October, and had my decompression along with a laminectomy two years ago on the 31st of this month. I know how you feel. Since last September I have had burning sensations on my outer extremities, heat sensations on the back of my legs and arms, and pins and needles on the front of my legs and arms. My vision also becomes blurred and eventually doubled depending on my level of activity. Mind you, I have had other issues such as POTS, issues with balance, issues with not being able to stabilize my body temperature as I have low grade fevers a few times per week, permanent numbness on my fingers and upper feet and legs and tip of my tongue. I am not as sharp as I once was and I forget things a lot. My husband's 96 year-old grandmother can out last me during family functions. It's sad, but I try to laugh about it and joke with her about it. My doctors are willing to prescribe the strongest pain killers, but that is not what I want. I have been given hydrocode and patches that are even stronger than that. I have tried botox injections all over my head and neck because my pain specialist stated that it helps, but the pain was only gone for about two hours when it should last weeks or months. Now I'm on the highest dosage of gabapentin, which is a medication for fibermaiyalgia. It has lessened that nerve pain, but it doesn't get rid of it. If I push myself, the pain increases and I get the chiari type headaches. Once that happens I'm can't function for a few days much less think properly.
I qualified for disability under Syringomyelia using the Social Security Blue Book section 11.19 and subsection 11.04. There isn't a section specifically under Chiari, but there are several sections that the symptoms could fall under. Below is the link for you to explore. With the chronic pain comes fatigue for me. There is a section in there for fatigue as well.
Given that this condition is so rare, many doctors are not aware of the proper care of a person with it. My neurologist and I have gone rounds because of this. I had to bring her the research on POTS and Chiari in order to get a referral to a cardiologist. I was just officially told this summer that I have POTS, but I have been telling my doctors that I have it for the last year.
I wish you the best. With this illness you have to be your own advocate.
http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurolog...
Thanks for all the info! I have been down with a migraine for 4 days secondary to my chiari! I appreciate all of the info! When doctors just look at you they think you are too young and should be able to work I missed 3 days last week and stressed how I will get caught up! I drive an hour each way 5 days a week and work an 8 hour day plus home duties! I feel like crying just to make it through the day. My mind is so foggy I can't hardly do my job I can barely remember my own name!
Sad to hear about your symptoms but glad I’m not the only one. I’ve felt like I’m going mad. Nearly 2 yrs post op and still having problems. I’m now under a neurologist also and she diagnosed trigeminal autonomic cephalgia and hemicrania continua. Along with this nerve pain that goes across the right side of my head and down my right arm, I’ve also the base of skull/neck chairi pains back and I’m vomiting again daily.
I’ve just gone off sick again in work, which is effectively resigning, as I’ve been off so much since. I’m on lamotrigine, co-codamol, oromorph and indomethocin.
I’m in the UK so will have to look at our disability.
Has anyone been told how long these symptoms can last? Is it a life long condition? I feel at my wits end. No one seems to understand how bad the symptoms r, the Illness does not have a title friends and family understand. As there being so unsympathetic I feel like I’m going mad and it’s all psychological. Ps also my right pupil changes in size and becomes sluggish when I’ve got extreme pain n brain fog bit Drs are no longer concerned about it. Help!!
Hi retired at 38, I am 45 years old, had a decompression surgery along with laminectomy and duraplasty a year ago. My surgery went well, no complications and my recovery was slow but steady. After two months I felt good enough to go back to work, so I went back to work part time first and gradually went to full time. But then I noticed that my pain was creeping back up and also there were new symptoms. So I decided to go back to part time again but it didn't help. All my symptoms were back full blast plus new ones. I end up quitting all together. After my surgery I had have 3 MRI with and without contrast. It shows that my syrinx had shrunk , so that's good news, but my questions are why am I still having so much pain?. My Neurosurgeon put me on Gabapentin which helps the burning pain a little. Also I went to see a pain management doctor and got the injection for pain near my spine but that only gave me a couple of weeks of relief. At the same time I was going to Physical therapy which did not help, it only made my symptoms worse. After every session I was in agony and there were times that my arms and legs were numb.So I called my neurosurgeon if he can see me earlier instead of waiting for my upcoming appointment, so he was able to see me and order for me to get an EMG test. Well the result was that I had a pinched nerve on my C6-7. So I told him that this time I am really hurting and I can hardly use my left arm, I have shooting pain on my neck to the top my head and head aches and my left leg is getting weaker. I also told him that the Gabapentin is not helping anymore so he change to Lyrica. It helps just a little . The pains, fatigue and dizziness and headaches really drain my energy I can't function which led me to quit working. So you said you were qualified for SSD? Did you applied for it? And if you did , did you get granted? I did apply and got denied once but I appealed with the help of an attorney and now we were just waiting for the result. How long did it take for you to get SSD, and did you need an attorney? Any insight would be appreciated, as my family really feels the loss of my income. Best wished to you, from Cebu70.
retiredat38 said:
I'm 39, 40 in October, and had my decompression along with a laminectomy two years ago on the 31st of this month. I know how you feel. Since last September I have had burning sensations on my outer extremities, heat sensations on the back of my legs and arms, and pins and needles on the front of my legs and arms. My vision also becomes blurred and eventually doubled depending on my level of activity. Mind you, I have had other issues such as POTS, issues with balance, issues with not being able to stabilize my body temperature as I have low grade fevers a few times per week, permanent numbness on my fingers and upper feet and legs and tip of my tongue. I am not as sharp as I once was and I forget things a lot. My husband's 96 year-old grandmother can out last me during family functions. It's sad, but I try to laugh about it and joke with her about it. My doctors are willing to prescribe the strongest pain killers, but that is not what I want. I have been given hydrocode and patches that are even stronger than that. I have tried botox injections all over my head and neck because my pain specialist stated that it helps, but the pain was only gone for about two hours when it should last weeks or months. Now I'm on the highest dosage of gabapentin, which is a medication for fibermaiyalgia. It has lessened that nerve pain, but it doesn't get rid of it. If I push myself, the pain increases and I get the chiari type headaches. Once that happens I'm can't function for a few days much less think properly.
I qualified for disability under Syringomyelia using the Social Security Blue Book section 11.19 and subsection 11.04. There isn't a section specifically under Chiari, but there are several sections that the symptoms could fall under. Below is the link for you to explore. With the chronic pain comes fatigue for me. There is a section in there for fatigue as well.
Given that this condition is so rare, many doctors are not aware of the proper care of a person with it. My neurologist and I have gone rounds because of this. I had to bring her the research on POTS and Chiari in order to get a referral to a cardiologist. I was just officially told this summer that I have POTS, but I have been telling my doctors that I have it for the last year.
I wish you the best. With this illness you have to be your own advocate.
http://www.ssa.gov/disability/professionals/bluebook/11.00-Neurolog...