ok, so I was diagnosed in January and after having the CSF flow study learned I have only a trickle of flow anteriorly and no flow posteriorly. I’m thinking that there really is no other option than to have the surgery. I’m a little frightened, even given my medical background. I’ve heard where the decompression alleviates symptoms quickly than I’ve read here where it seems to exacerbate symptoms. Feeling pretty much terrible all the time, is surgery the best option or should I just continue to move through life being in pain 85% of the time?
The way you are phrasing your question makes me think you have already decided, JenM, and would like some encouragement and reassurance. I hope lots of members will share their experiences, especially their success stories, with you. Have you picked a neurosurgeon yet?
I think I will be going with Dr. Barth Green out of University of Miami. I met with him once and will hopefully schedule another apt. tomorrow. I’m just nervous that it won’t work. : /
I was diagnosed in September and two days later was admitted to the hospital for a week leading up to surgery. My quality of life was zero… I am 25 and that is a hard pill to swallow that your are about to have brain surgery. The emotions and fear will get the best of you but in my opinion it is your attitude and faith that will be the lasting positive effects from surgery. The second I opened my eyes in ICU I was changed. My vision was back as I went blind in my left eye and the excruciating headache I had had without a break for 45 days (not exaggerating) was gone. The hardest part has been recovery because you don’t heal over night but I have been determined since I woke up from surgery that chiari won’t conquer me… I will conquer chiari! Listen to your heart and don’t question anything… Surgery really is a life saver and so is your positivity!
Hi JenM, If you are feeling that badly 85% of the time I would go for the surgery. My son was diagnosed with Chiari and Syrinx at 14 mos old. He is now 5 and doing really great! He was so bad that surgery was his only option. He has had 2 decompression surgeries, 2 bacterial meningitis infections, 2 revisions, 3 lumbar drains, VP shunt in/out and physical therapy. It was a rough road through all that and the recovery was long but completely worth it versus the alternative being that Chiari would have basically killed him without the surgery. I could tell and I know he could also an immediate difference with all of the symptoms. He still has a little bit of a syrinx but SO much better. He still has random vomiting but few and far between now and a hyper gag reflex. In his case there was no way that surgery would have made things worse and I suspect the same with your case. Just breathe, pray, have faith and stay POSITIVE! Also make sure your Neurosurgeon has done many, many decompression surgeries with a success rate..
Talk to a knowledgeable neurosurgeon. A third of the people that have the decompression surgery have a great outcome. One of the people that I’ve read about with a great outcome is Johnny Cash’s daughter.
It can be very dangerous to NOT have decompression. A blocked CSF flow can result in a blockage of fluid to the spine, which can cause permanent paralysis. I'm sorry if this sounds a bit over dramatized, but it is a potential result of foregoing the surgery. My Chiari surgeon made this possibly very clear to me. I believed him! I had my surgery.
A Chiari isn't a condtion which heals itself. Gentle hugs.
Toni, you are so correct. It is very important to find an experienced CHIARI surgeon. My Chiara was found during a regular MRI by an alert radiologist. My family doctor, thinking my severe head pains were actually small strokes, sent me to a Neurosurgeon who looked at my MRI, pointed to an area in the neck which he said was my Chiari. Not that I was fully informed at that time, but I had spent hours and hours online learning as much as I could about a Chiari. I recognized that he had no idea what he was talking about He kept saying things which he thought made him sound expert! Then he sat back and said, "Well! Let's revisit this in three months.
I returned home and immediately researched online. I found Dr. Tew at the Mayfield Chiari Clinic, only 30 minutes from my home. I called his office, was questioned for 45 minutes on the phone with a Jeremy. His job was to determine whether I did, in fact, potentially have a Chiari. I did.
I was given an appointment for a CINCI MRI and an appointment with Dr. Tew two days later. On the very day I was supposed to have a follow-up appointment with the other doctor, Dr. Tew performed my decompression surgery - March 3, 2013.
BTW, I called the first doctor's office and told him he should NEVER accept Chiari patients - because he could kill them.
If it's okay to ask, in which city do you live? I know it is sometimes very difficult to locate a Chiari Specialist. Others on this forum may be able to help.
Toni said:
Hi JenM, If you are feeling that badly 85% of the time I would go for the surgery. My son was diagnosed with Chiari and Syrinx at 14 mos old. He is now 5 and doing really great! He was so bad that surgery was his only option. He has had 2 decompression surgeries, 2 bacterial meningitis infections, 2 revisions, 3 lumbar drains, VP shunt in/out and physical therapy. It was a rough road through all that and the recovery was long but completely worth it versus the alternative being that Chiari would have basically killed him without the surgery. I could tell and I know he could also an immediate difference with all of the symptoms. He still has a little bit of a syrinx but SO much better. He still has random vomiting but few and far between now and a hyper gag reflex. In his case there was no way that surgery would have made things worse and I suspect the same with your case. Just breathe, pray, have faith and stay POSITIVE! Also make sure your Neurosurgeon has done many, many decompression surgeries with a success rate..
JanetKP is right, it is very dangerous to leave the fluid on the spine. That was one of the many reasons my son had the surgery. He couldn't swallow, he constantly vomited, he could see all that well, couldn't hear well, was always in pain, couldn't turn his neck, couldn't walk without falling over, could barely breath..I'm sure I am missing some things but he also had a large syrinx that was dangerous to leave on his spine.
Good Luck with your procedure, I'm sure it will change for the better for you. The numbers for improvement from surgery are constantly improving. I suppose one could give all kinds of reasons from better technique, bertter docs etc.
I suspect however that it is because a better job of serving candidates is being done. At one time it was all based on structure and size. In fact there is still a strong school out there believing a herniation of 5mm or under is not problematic (and they are probably right a lot of the time) Slowly thinking has changed now primary is flow rates to the decision. Since 2013 there has been an attempt to add some age norms to those calculations.
The fact is there was likey way too much surgery done that likely didn't need done, and likely should not have been done. This was mostly the result of compassion. If it could help why not? Now I'm not a neuro surgeon or neurologist, but I am good with numbers............. I'm betting on you Jenn. In fact I'd bet you feel better quickly when those flow rates improve.
Jen, I see you live in Florida. My son was diagnosed in Florida -Orlando when we lived there by Dr. Eric Trumble who is on this forum. You may want to consult with him.
Dr Disclafanti was my nueroseugen 20 years ago in Florida. He is now in Ocala. He is amazing. I had brain and back surgery.
JanetKP,
I live in Tampa, Fl. The reason I went to Miami is for that very reason... no neurosurgeon who routinely works on Chiari patients. Dr. Barth Green at the University of Miami, He stated that he performs these surgeries all the time and has greater than a 90% success rate. I had scheduled an initial consultation with Dr. Trubmble in Orlando, but could not get in until the end of April. Although I called to see if it could be moved up with no such luck. When I scheduled my apt. in January, I was unaware of the lack of CSF flow. My Chiari is also 10.5 mm. Fortunately, my major symptom is severe headaches. I do not have the sensitive gag, muscle weakness, vision loss (although I do have periods where my vision goes out for 10-15 seconds it is more likely due to orthostatic hypotension), etc.
JanetKP said:
Toni, you are so correct. It is very important to find an experienced CHIARI surgeon. My Chiara was found during a regular MRI by an alert radiologist. My family doctor, thinking my severe head pains were actually small strokes, sent me to a Neurosurgeon who looked at my MRI, pointed to an area in the neck which he said was my Chiari. Not that I was fully informed at that time, but I had spent hours and hours online learning as much as I could about a Chiari. I recognized that he had no idea what he was talking about He kept saying things which he thought made him sound expert! Then he sat back and said, "Well! Let's revisit this in three months.
I returned home and immediately researched online. I found Dr. Tew at the Mayfield Chiari Clinic, only 30 minutes from my home. I called his office, was questioned for 45 minutes on the phone with a Jeremy. His job was to determine whether I did, in fact, potentially have a Chiari. I did.
I was given an appointment for a CINCI MRI and an appointment with Dr. Tew two days later. On the very day I was supposed to have a follow-up appointment with the other doctor, Dr. Tew performed my decompression surgery - March 3, 2013.
BTW, I called the first doctor's office and told him he should NEVER accept Chiari patients - because he could kill them.
If it's okay to ask, in which city do you live? I know it is sometimes very difficult to locate a Chiari Specialist. Others on this forum may be able to help.
Toni said:Hi JenM, If you are feeling that badly 85% of the time I would go for the surgery. My son was diagnosed with Chiari and Syrinx at 14 mos old. He is now 5 and doing really great! He was so bad that surgery was his only option. He has had 2 decompression surgeries, 2 bacterial meningitis infections, 2 revisions, 3 lumbar drains, VP shunt in/out and physical therapy. It was a rough road through all that and the recovery was long but completely worth it versus the alternative being that Chiari would have basically killed him without the surgery. I could tell and I know he could also an immediate difference with all of the symptoms. He still has a little bit of a syrinx but SO much better. He still has random vomiting but few and far between now and a hyper gag reflex. In his case there was no way that surgery would have made things worse and I suspect the same with your case. Just breathe, pray, have faith and stay POSITIVE! Also make sure your Neurosurgeon has done many, many decompression surgeries with a success rate..
Toni,
He was the other neurosurgeon I scheduled an appointment with back in January. Unfortunately my appointment isn't until 4/27. I do not know whether or not I should hold off... because I can likely have the decompression before my appointment time with Dr. Trumble; which would work perfectly with my schedule. Not sure what to do there either. : /
Toni said:
Jen, I see you live in Florida. My son was diagnosed in Florida -Orlando when we lived there by Dr. Eric Trumble who is on this forum. You may want to consult with him.
Dozzy,
I don't think I could every go to a Chiropractor. I went years ago and although it started out ok, the more he adjusted the more anxious I became. I got to the point where I couldn't relax and feared damage would be done.
Dozzy said:
Try a NUCCA chiropractor! My son has made remarkable progress to the point we are no longer considering surgery.
I had surgery in 2001, with much concern that I would fall into that category that didn’t get better or even got worse. It took me about a year post surgery to fell better, but once I did, I wished I hadn’t put surgery off for so long! Also, remember that most of the forums and threads you read online are from people who are still looking for answers and help. Those of us who are doing great don’t always come to these groups because we are getting on with things and feeling well. I wish more people who are back to healthy living after surgery would come and comment so people who are still suffering can hear some good, encouraging news!
how do they do a CSF STUDY what do they do to you
There are actually 2 "cine MRIs" being done Some of the chiari centers are doing one using traditional MRI with the addition of a software enhancement that matches imaging to heart beat (the patient has an ekg lead or finger probe attached) This is more of a screening test and somewhat controversial when used as a diagnostic tool. The second type is called Phase Contrast Cine. Its a bit harder to come by. Until very recently it was pretty much restricted to academic centers. Its been used in major cardiac centers foer a while. In this version a contrast dye is used. It can be uncomfortable and the patient is usually given the option of being sedated. Its a much more accurate study.
dolphinlove123 said:
how do they do the CSF flow study to you does it hurt
I had decompression and was symptom free for ten years. Then had headaches again. Now 13 years later I need it again and spinal fusion
I was really afraid to I was diagnosed with cm1 dec had decompression jan 28th. I spent endless nights before worried scared needing If I could do this, seemed to much to handle like no way could any one get me there. I went to Stanford hospital ca o de Steinburg amazing dr he has complete confidence and compassion. He gave me my life back I’m 3 almost 4 weeks post op it’s painful and a frustrating recovery as you can lift or do much for yourself but not we bad as you imagine in your mind I can’t speak for any other de then mine but I was up walking next day have some really good days still few bad/ but I woke up and now my symptoms from my chiari are gone it’s amazing pain from surgery is different and everyday better. He has given me a chance at life. Don’t be scared just keep remembering it’s your only chance at a good quality of life. Just be sure you have a good neuro I can give you my email of you have questions be strong