Aa
I need help PLEASE!!!
I have tried everything and need advice, I hope you can help me. I have had neck pain with headaches for 3 1/2 yrs now and nothing takes away the pain.
I started seeing a chiropractor in 6/06 for lower back pain I was having and at that time he also started adjusting my neck. After my first neck adjustment I started having horrific daily headaches. They would start in my neck and then continue up the back of my head and they would go down my back to right past my shoulder blades. There was nothing I could ever do to make them go away. This neck pain has continued to get worse. I have seen so many Doctors over the past 3 1/2 years and no one could tell me why I was having the pain. All they could figure out was that I have arthritis in my neck and some disc degeneration but they found nothing that would cause me to have the horrible daily pain I was having.
I have tried every injection and procedures including nerve blocks that was available I also tried acupuncture for 6 months but nothing would relieve my pain.
I did see 2 Neurosurgeons and neither said they would operate on me because they didn't feel the degeneration was bad enough so again all I keep hearing is try to deal with the pain.
I finally went to the Cleveland Clinic in Ohio in 1/09 and the Doctor I saw there concluded I have a slight Chiari malformation to which the surgeon concurred.
Ultimately that lead me to the Chiari Institute in New York. While I was there they said I have a slight tonsil descension but not enough to need surgery. Upon looking at my MRI's the surgeon said I do have a very unstable neck and brain compression. He said I have the neck of a 70 yr. old and added that I don't have anything supporting my head and when I stand or sit up my neck falls about 3/4 of an inch to my shoulders. He suggested I try at home traction with a pronex unit and a vista collar if I traveled. I will do ANYTHING to make this pain go away! The pronex gave me more pain during and after using it. I had already figured I might go through a stage where I could get worse before I get better, so I continued to use it. After a week I couldn't use the pronex without crying the whole time while using it. I checked with my doctor and he suggested that I stop using it.
Next I was referred to another Doctor in Ny named Dr. Alon Mogilner to try a neuro stimulator. He inserted a trial in my neck for a week to see if it was going to work. It didn't help at all it didn't even reach the spot in my neck that needed the help. So he decided to move it to a spot between my shoulder blades on my spine and unfortunately it didn't help either. After that they suggested I try a pain pump. I did not want to do that because I still feel there is something wrong with me that can be fixed. But I did get a refferal to a Doctor in Columbus, Ohio to talk about it. After seeing all of the MRI's, CT's and other tests he suggested I go back to see Dr. Gerwitz (neurosurgeon), so I did. He finally decided he would try a disc fusion which I had done Aug. 27, 2009. My pain is still the same since having the surgery nothing has changed. Dr. Gerwirtz said most people get relief right after surgery so he doesn't think that was my problem but he has no suggestions for me on what to do next.
I am just at the end of my rope, I don't know how much longer I can take this pain, it is EVERY day ALL of the time, I'm so tired of being sick and tired. I have a wonderful family, my husband is amazing, if it weren't for him I would never have gotten most doctors to even listen to me and try anything. We have 4 kids and my husband works 3 jobs to support us since I can no longer work. I feel so bad that he has to work so hard even though he never ever complains. I just want to have my life back and thought maybe you could help.
Here are all of my symptoms:
Neck pain
Headaches
Tinnitus (very bad)
Nausea
Blurry vision (comes and goes)
Dizziness
Very frequent urination
Body aches
Memory problems
Thank you so much and any help would be greatly appreciated.
I started seeing a chiropractor in 6/06 for lower back pain I was having and at that time he also started adjusting my neck. After my first neck adjustment I started having horrific daily headaches. They would start in my neck and then continue up the back of my head and they would go down my back to right past my shoulder blades. There was nothing I could ever do to make them go away. This neck pain has continued to get worse. I have seen so many Doctors over the past 3 1/2 years and no one could tell me why I was having the pain. All they could figure out was that I have arthritis in my neck and some disc degeneration but they found nothing that would cause me to have the horrible daily pain I was having.
I have tried every injection and procedures including nerve blocks that was available I also tried acupuncture for 6 months but nothing would relieve my pain.
I did see 2 Neurosurgeons and neither said they would operate on me because they didn't feel the degeneration was bad enough so again all I keep hearing is try to deal with the pain.
I finally went to the Cleveland Clinic in Ohio in 1/09 and the Doctor I saw there concluded I have a slight Chiari malformation to which the surgeon concurred.
Ultimately that lead me to the Chiari Institute in New York. While I was there they said I have a slight tonsil descension but not enough to need surgery. Upon looking at my MRI's the surgeon said I do have a very unstable neck and brain compression. He said I have the neck of a 70 yr. old and added that I don't have anything supporting my head and when I stand or sit up my neck falls about 3/4 of an inch to my shoulders. He suggested I try at home traction with a pronex unit and a vista collar if I traveled. I will do ANYTHING to make this pain go away! The pronex gave me more pain during and after using it. I had already figured I might go through a stage where I could get worse before I get better, so I continued to use it. After a week I couldn't use the pronex without crying the whole time while using it. I checked with my doctor and he suggested that I stop using it.
Next I was referred to another Doctor in Ny named Dr. Alon Mogilner to try a neuro stimulator. He inserted a trial in my neck for a week to see if it was going to work. It didn't help at all it didn't even reach the spot in my neck that needed the help. So he decided to move it to a spot between my shoulder blades on my spine and unfortunately it didn't help either. After that they suggested I try a pain pump. I did not want to do that because I still feel there is something wrong with me that can be fixed. But I did get a refferal to a Doctor in Columbus, Ohio to talk about it. After seeing all of the MRI's, CT's and other tests he suggested I go back to see Dr. Gerwitz (neurosurgeon), so I did. He finally decided he would try a disc fusion which I had done Aug. 27, 2009. My pain is still the same since having the surgery nothing has changed. Dr. Gerwirtz said most people get relief right after surgery so he doesn't think that was my problem but he has no suggestions for me on what to do next.
I am just at the end of my rope, I don't know how much longer I can take this pain, it is EVERY day ALL of the time, I'm so tired of being sick and tired. I have a wonderful family, my husband is amazing, if it weren't for him I would never have gotten most doctors to even listen to me and try anything. We have 4 kids and my husband works 3 jobs to support us since I can no longer work. I feel so bad that he has to work so hard even though he never ever complains. I just want to have my life back and thought maybe you could help.
Here are all of my symptoms:
Neck pain
Headaches
Tinnitus (very bad)
Nausea
Blurry vision (comes and goes)
Dizziness
Very frequent urination
Body aches
Memory problems
Thank you so much and any help would be greatly appreciated.
COMMUNITY LEADER
Hi and welcome to the Chiari forum,
The members you addressed your comments to have not posted in a while, they are not active members at this time.....you can send them a PM ( private message) which will generate a e-mail notifying them someone is trying to make contact.
You can also create a new thread and address the current members.....
We also have a list compiled of what not to do for those with Chiari and Syringomyelia.....
Do you have any other related conditions?
I was diagnosed with a "slight Chiari malformation" 15 years ago and told we would treat the symptoms and it was no big deal. I suffered horribly for 15 years and also tried chiropractor, Neurostimulator with Dr. Mogilner, many, many, meds, etc. I finally saw a Chiari specialist back in June and I recently had my decompression surgery in November. I'm still recovering but I have hope for a better life now. Size of herniation does not matter! I see Dr. Michael Rosner in NC. Try to get to a Neurosurgeon who specializes in Chiari. They have a list somewhere on here with that info.
I have Chiari and recently had decompression surgery. I have a list of "do nots" for Chiarians. Chiropractors are on there for sure.
I am so sorry for what you are going through. You did go through so much and nothing yet worked on your situation. I think you need to try to go to specialist who will focus on your symptoms. I have gone through a lot not like you but finaly I found one Dr who was willing to review my conditions. It took him almost 5 months to study my pain and find out I will need a surgery to fix it. Most of your symptoms sound like caused by Chiari, I sent you a website for Dr. Nagib in Minneapolis, he is the best and you will be suprises by his foundings. He doesn't support surgery unless it is necessary, he will take time to review your findings and suggest you what will be the best. I have my surgery planned for next week. Good luck !
Shortcut to: http://www.neurosurgicalassocs.com/providers.cfm/pid:563/Mahmoud_Nagib/index.htm
Minneapolis
Phone 612-871-7278
Fax 612-863-8531
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Map/Directions
Mahmoud Nagib, M.D.
Biography
Dr. Mahmoud Nagib received his Facility of Medicine degree at the University of Cairo, Egypt. He completed his residency in the Department of Neurosurgery at the University of Minnesota. He was board certified in Neurological Surgery in 1985 and Pediatric Neurological Surgery in 1994, with recertification in 2006.
Some of Dr. Nagib's subspeciality interests include:
Adult, pediatric and neonatal neurosurgery
Skull based surgery - adults and pediatric
Acoustic Neuromas
Microsurgical approaches of the third and fourth ventricle
Congential abnormalities of the spine
Cervical Arthroplasty (Artificial Cervical Disc Replacement)
Dr. Nagib is the president of Neurosurgical Associates, Ltd. He is a clinical assistant professor at the University of Minnesota, a staff neurosurgeon at Abbott Northwestern, Children's Hospital and Clinics, Minneapolis, and Fairview Southdale Hospital and an associate neurosurgeon at Hennepin County Medical Center.
Since 1991, Dr. Mahmoud Nagib has been listed in the Mpls/St.Paul Magazine as a top Neurosurgeon and in the Castle Connolly's Guide for the past seven consecutive years as one of America's top doctors.
Dr. Nagib is a member of the American Association of Neurological Surgery, Congress of Neurological Surgeons, American Society of Pediatric Neurosurgery, French Society of Neurosurgery, International Society of Pediatric Neurosurgery, Fellow of the American and International College of Surgeons, Minnesota Neurosurgical Society, American Medical Association and Pediatric Section of American Association of Neurological Surgeons.
Dr. Nagib performs surgery at Abbott Northwestern Hospital, Children's Hospital and Clinics, Minneapolis and Fairview Southdale Hospital.
Dr. Nagib joined Neurosurgical Associates in 1983.
Click here to see Dr. Nagib featured in a WCCO Story
Shortcut to: http://www.neurosurgicalassocs.com/providers.cfm/pid:563/Mahmoud_Nagib/index.htm
Minneapolis
Phone 612-871-7278
Fax 612-863-8531
913 East 26th Street
305 Piper Building
Minneapolis, Minnesota 55407
Map/Directions
Mahmoud Nagib, M.D.
Biography
Dr. Mahmoud Nagib received his Facility of Medicine degree at the University of Cairo, Egypt. He completed his residency in the Department of Neurosurgery at the University of Minnesota. He was board certified in Neurological Surgery in 1985 and Pediatric Neurological Surgery in 1994, with recertification in 2006.
Some of Dr. Nagib's subspeciality interests include:
Adult, pediatric and neonatal neurosurgery
Skull based surgery - adults and pediatric
Acoustic Neuromas
Microsurgical approaches of the third and fourth ventricle
Congential abnormalities of the spine
Cervical Arthroplasty (Artificial Cervical Disc Replacement)
Dr. Nagib is the president of Neurosurgical Associates, Ltd. He is a clinical assistant professor at the University of Minnesota, a staff neurosurgeon at Abbott Northwestern, Children's Hospital and Clinics, Minneapolis, and Fairview Southdale Hospital and an associate neurosurgeon at Hennepin County Medical Center.
Since 1991, Dr. Mahmoud Nagib has been listed in the Mpls/St.Paul Magazine as a top Neurosurgeon and in the Castle Connolly's Guide for the past seven consecutive years as one of America's top doctors.
Dr. Nagib is a member of the American Association of Neurological Surgery, Congress of Neurological Surgeons, American Society of Pediatric Neurosurgery, French Society of Neurosurgery, International Society of Pediatric Neurosurgery, Fellow of the American and International College of Surgeons, Minnesota Neurosurgical Society, American Medical Association and Pediatric Section of American Association of Neurological Surgeons.
Dr. Nagib performs surgery at Abbott Northwestern Hospital, Children's Hospital and Clinics, Minneapolis and Fairview Southdale Hospital.
Dr. Nagib joined Neurosurgical Associates in 1983.
Click here to see Dr. Nagib featured in a WCCO Story
I've heard that chiropracters are bad for Chiarians. Go to them for lower back but don't let them touch above the shoulder blades of a Chiari patient. Unfortunately, if the Chiari is undiagnosed, damage can be done without knowing.
I have heard the chiropractors can cause Chiari symptoms to be increased and possibly even lead to great herniation. anyone else hear about this ? Did your Chiari doc mention any of this too you?
blame the brain hemorrhoid for that : ) it works for me when I make simple mistakes and get corrected by a four year old LOL
anyways. I am so sorry merlot that you are suffering like this. I live in ohio and had not heard many good things from the Cleveland CLinic's Neuro dept. Glad you pursued other avenues. One thing I have learned from here is that it isn't the length of the Hemorrhoid it is the back up of CSF did they test you for this? DOnt give up there maybe other ways to help with symptom relief will help you.
welcome to this group they are all a great suppot.
Angie
anyways. I am so sorry merlot that you are suffering like this. I live in ohio and had not heard many good things from the Cleveland CLinic's Neuro dept. Glad you pursued other avenues. One thing I have learned from here is that it isn't the length of the Hemorrhoid it is the back up of CSF did they test you for this? DOnt give up there maybe other ways to help with symptom relief will help you.
welcome to this group they are all a great suppot.
Angie
oh my goodness!!!! i thought i was having an ok day until i re read your post!!! how i missed that you had been to tci is waaaaaayyyy beyond me! i think i will retreat to a corner and sit there for a while until my eyes and brain are on the same page! i'm soooo sorry merlot! i'm usually just a bit more observent than this! so now....i will run and hide, tail tucked between my legs, brain falling out almost yet another year older...... : (
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Wow....may I ask how long since u had the MRI's and been to TCI?
Ur symptoms sound so much like the issues a chiarian has, but u also have such degeneration of ur cervical spine if it looks like a 70 yr olds.
U also didn't mention if u had a CINE MRI...if u did I overlooked it...sorry...but dimminish CSF flow and symptoms and overcrowding r more a rason for surgical intervention....just a mild herniation is not.
Did TCI talk to u about fusion?.....or nething else other than the surgery u just had.
I can only assume u were checked for other related chiari conditions like syringomyelia, tethere cord...EDS....????
Also has ne one mentioned Dr Arnold Menzes?
"selma"
Wow....may I ask how long since u had the MRI's and been to TCI?
Ur symptoms sound so much like the issues a chiarian has, but u also have such degeneration of ur cervical spine if it looks like a 70 yr olds.
U also didn't mention if u had a CINE MRI...if u did I overlooked it...sorry...but dimminish CSF flow and symptoms and overcrowding r more a rason for surgical intervention....just a mild herniation is not.
Did TCI talk to u about fusion?.....or nething else other than the surgery u just had.
I can only assume u were checked for other related chiari conditions like syringomyelia, tethere cord...EDS....????
Also has ne one mentioned Dr Arnold Menzes?
"selma"
hi merlot..so sorry to hear of your awful plight......many of us here have been thru similar situations in search of a dr. that could actually help us. so first off, know you are not alone in your struggles!
the first question and the most important one in my mind, have you ever been to a chiari specialist?
the first question and the most important one in my mind, have you ever been to a chiari specialist?
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