I was recently diagnosed with Chiari 1. I have read so many bad things about the surgery so right now I am thinking that I do not want to do the surgery. I was wondering if there is anyone out there living with Chiari 1 who have opted not to do the surgery? Also, does anyone know what % of people who have been diagnosed with Chiari actually have the surgery (is it 75% of people, etc.).
Thanks!
Another issue... For the past 3 1/2 years I have been dealing with anxiety. At this point, I dont know what is Chiari related and what is Anxiety related so it's very hard for me to determine how bad my Chiari symptoms are.
Yes, it seems just about everything I hear about the surgery is "negative". Is there anyone out there that has had a "successful" surgery and no regressions? I have not had surgery as of yet and reading all the comments from people that have had the surgery but still have symptoms is very discouraging.
The.people.who.still.have.symtom probably have.chiari.related.disorders.
Hi, I had decompression surgery with a dura patch on 8/8/13 of this year. I am so glad I had the surgery…2 months post-op and I feel great. I feel very fortunate after reading the experiences others have had and how so many are still suffering. I had a 16 mm descent that caused chronic migraines, arm numbness, balance problems, ringing in ears, etc. The recovery was tough…the first 2 weeks post-op I just cried and wondered what I had done. I turned a corner and things have gotten better. Please lete know if you have questions about my experience. I hope you get relief.
Hello Patti,
I am living with Chiari 1 WITHOUT surgery. I was seen by numerous doctors, including a neurosurgeon in NYC
who specializes in Chiari & Decompression surgery. He discussed with me the option of surgery.. pros & cons..
but first said I must speak with my ENT doc to get his opinion. The ENT doc didn't think surgery was necessary..
My main symptoms include neck pain & stifness, speech & voice issues, difficulty swallowing water & thin liquids.. I can choke and I cough a lot..
things feel like they either go down too fast, the wrong way, or sometimes get stuck.. I'm thin & have difficulty gaining wieght ( 5'4" & 108 - 110 lbs) I also have hair thinning... & hormonal imbalances.. I must be very careful how
I swallow fluids because I have gotten pneumonia a few times from water going into my lungs..
However, the ENT doc felt that if I am able to strengthen my throat muscles through speech therapy and learning how to swallow properly, then surgery can be avoided.
I don't know the % of chiarians who have the surgery... but if your symptoms are somewhat manageable, then perhaps
you can get by WITHOUT the surgery???
What are your symptoms? I understand it it not a pleasant condition/situation but are they manageable?
I think NS's are taking the wait and see option more recently, so there are a lot of people that are living with CM. I know CM surgery is scary and bad things do happen, but that is usually when you have a complicated Chiari situation like I did. Please know many people have positive surgical experiences. There are also risks associated with not having the surgery & you need it. I was very close to becoming a quadripledgic when I was diagnosed and had to have emergency surgeries for CM & a rebuilt C Spine. I thought I had just been working too much and my neck was hurting when I saw my NS for a follow up for Geniculate Neuralgia MVD surgery. Luckily he did an xray & then an MRI on the spot.
You need to be careful if you decide not to have surgery and keep a check on the herniation and CSF flow regularly. I am not pro surgery unless absolutely necessary, but if it is warranted you will be jeopardizing not only your current and future health but possibly your life if you don't have decompression surgery. Please just think about all possibilities.
I am not trying to scare you further I am just being totally honest. I wish you the best in this stressful decision. Under our Research Group I posted some research on Surgical outcomes and other information that might help with some additional information.
Where did you have your surgery and who was your doctor?
mdandrews74 said:
Hi, I had decompression surgery with a dura patch on 8/8/13 of this year. I am so glad I had the surgery...2 months post-op and I feel great. I feel very fortunate after reading the experiences others have had and how so many are still suffering. I had a 16 mm descent that caused , arm numbness, balance problems, ringing in ears, etc. The recovery was tough...the first 2 weeks post-op I just cried and wondered what I had done. I turned a corner and things have gotten better. Please lete know if you have questions about my experience. I hope you get relief.
At this point I honestly dont know what my symptoms are. I know that sounds strange but I dont. 3 1/2 years ago I was diagnosed with anxiety. Now, I always relate all my problems to the anxiety. It's very difficult for me to understand what is related to what.
I have been having headaches at the base of my neck and pain behind my right eye and ear - but they are only about a 3, not too bad. I have had days where I feel lightheaded or off balance. And someways I feel like I'm walking in a fog and cant concentrate (this has gotten really bad since I met with the neurosurgeon which makes me think it's anxiety related).
I just spoke with someone who has Chiari and had the surgery 2 years ago. She told me that it is life threatening (i never knew this) and it's best to have surgery before you have alot of symptoms. She explained to me that once you have symptoms alot of times they wont go away after surgery. This information has really put me over the edge emotionally - I dont know what to think or believe.
I am so overwhelmed with information...
Many Chiarians are incorrectly diagnosed with anxiety prior to getting a correct diagnosis. I sent through it too. Remember when your heart rate goes up so does your CSF flow which can increase Chiari symptoms…
Like what? I know that Ehler Danlos and POTS are Chiari related....I'm just wondering if there are others........
Donna said:
The.people.who.still.have.symtom probably have.chiari.related.disorders.
I had surgery 3 years ago. I had a decompression, Duraplasty, and had the C-1 vertabra removed. My symptoms were all neuro but no headaches. I had a large cervical syrinx that had developed from almost complete CFS flow blockage from my moderate Chiari that was causing my spinal nerve damage and symptoms. My NS was confident I was well on my way to a wheelchair and all other opinions were exactly the same-to get it done before more spinal damage occurred. I was terrified but also very afraid of sudden onset of irreversible paralysis that can happen with syringomyelia (having a syrinx). I am in my 50’s so that made surgery even scarier. However, I am in good health otherwise and pretty fit so that helped.
I was in the hospital a total of 7 days because of complications. My recovery was slow and I worried a lot if the lingering pains and nerve damage would ever go away. However, with a very supportive and caring NS to support me, and after very good PT and making myself do all the shoulder and neck strengthening exercises, etc. I finally got my life back. My syrinx has completely collapsed and I have had no further progression. Almost all of my pre surgery symptoms are gone except for some nerve pain which is permanent because of damage in the cord from the syrinx. However, when I think that I would likely have paralysis and significant muscle and nerve damage had I not been properly diagnosed and treated, I am eternally grateful for my NS and his caring team. I have to be faithful with my stretching and strengthening exercises or symptoms increase but I mow the lawn, weed the garden, ride my bike, paint walls, and even have gotten back to jogging. I am very active and feel good most days.
I consider my surgery highly successful as do all my doctors. I can’t expect anyone to fix permanent nerve damage and my ears ring loudly and constantly, but I try to focus on all the positive outcomes I had and the fact that the Chiari is “fixed” and the horribly damaging syrinx collapsed. I pray I have no further issues with this and my NS doesn’t see that happening.
I think that because this condition is relatively rare it makes it much scarier to deal with and really creates a great deal of anxiety because so little is known. I had a great deal of anxiety over this because there were no clear answers. I would suggest that you think about getting on some meds to try and deal with the anxiety before making any decisions because all that stress really aggravates symptoms. Tensing your neck and shoulders in response to stress or pain causes more pain and stiffness and you get in a vicious cycle.
It sounds like you have no imminent need to have surgery so take your time and see how things progress. If you can manage the pain and get the anxiety under control, maybe you can hold off for now. Who knows, they make so many medical advances that they may have a totally different approach to this in a few years that you will benefit from.
I know not everyone has a good outcome but I am writing this to let folks know that some of us do and are very glad we went through with the surgery.
Kate
I, too, am avoiding surgery (as advised by my neurologist) and am struggling with hypersensitivity to light and sound, and an odd speech disorder that hits me when I'm multi-tasking, or getting excited, or "anxious". I've been given Busiprone (10 mg, twice a day) which as helped these symptoms somewhat, but not completely. I also take a low dosage of Diazapam, as needed.
As anyone else been percribed these medications (or something else like them) for your Chiari symptoms?
Hi I had decompression surgery with dura patch almost 2 years ago. It’s the best thing I’ve ever done. But my decision to go ahead with surgery was based on my symptoms, plus my neuro surgeon said my life was threatened if I didn’t, so it was a kinda no brainer. I had severe vertigo with vomitting. Everything was spinning so fast almost daily that I couldn’t even see. That was my worst symptom although there were others, but my vertigo has gone! Best gift ever. I still have numbness in my arms and legs, but that’s due to my syringomyelia, some dizziness and occasional brain fog. But for me, surgery was the best thing I’ve ever done. It took a good year to recover.
Hi Patti!
I was diagnosed with Chiari 1 in 1999. I did alot of research on surgery and other options, and elected not to have the surgery. I've never regretted it. I have made substantial changes in my life to accomodate it, but they are second nature now. I changed my diet, mostly healthy, but i do allow myself 1-2 "bad" diet days a month. I've put myself in a position jobwise and home to be stress free. Gentle Yoga stretching. Super comfy shoes to absorb impact, new firm bed. No caffene (makes the headaches worse), etc......
I personally feel it can be done, it does take a lot of changes, and it takes a while to adjust and work out what works for each individual. But as I said, I've never regretted it. My neurosurgen told me that something like 60% of C1's choose the surgery option.
Whatever you choose, good luck to you.
Surgery is a bit scary but not everyone has a bad outcome. I will be 1 year post-op on the 15th of this month and I'm very pleased with my results. It's important to go in knowing that it is a treatment and not a cure. I've read that approximately 80-85% of patients will see some improvement post-op. Most of the remainder stay the same and a few may end up getting worse. A lot of the people who fail to see improvement have other conditions like EDS and POTS.
Have you had a CINE MRI? If you opt out of surgery it's very important to have frequent MRI's because disruption of your spinal fluid flow can lead to permanent nerve damage, syrinx, or even paralysis!
In my personal case I had no syrinx and my flow was only partially disrupted. I decided to take the risk because I was already showing signs of nerve damage and I was not able to live my life to the fullest. I was dragging through the work day only to come home and collapse. I wasn't there for my husband or daughter like I wanted to be. I was losing friends because I was too tired to socialize. I knew there was a chance that surgery wouldn't help me but I decided to take a risk and I'm glad I did. This year I've barely missed any work, I get home and spend time with family, weekends I go for long hikes, to concerts, or dinner with friends. I do yoga, lift weights, and I started running. Of course I know that sometimes symptoms return and I pray that they won't but if so I will be thankful for the extra time the surgery gave me to enjoy my life!
I had surgery in Oct. 2012 and so far I have had many improvements and I am glad I had it.My journey was long 27 yrs.without a correct diagnosis in all that time.Things had just kept getting worse and I thought I would lose my mind.My problem was no other NS or Dr. could do anything for me.After years of searching for the answer to my illness my symptoms by then had escalated.With the help of God I found a NS who could help me,after seeing 20+ dr.s and numerous theropist and chiropractors.The decompression was done without the other dr.s I was seeing agreeing that was what was right.I knew with doing a lot of homework on the chiari it was what needed to be done and it has been right for me.There is still some issues that still remain but I am so much better,as for my anxiety and depression it was caused by the chiari most of it is gone.You have to research for yourself and weigh the symptoms and the quality of life,can your life be lived as it is and still be managed with meds.Life for me was not good and it was getting worse everyday and meds don’t help chiari.
Thanks for all the positive comments!!!
After talking on the phone today with someone who had the surgery, I think I’m going to have it. She made a great point…why wait for sonething to happen? Why not have the surgery now to stop any other symptoms from starting.
I am extremely scared but I think this is the right thing to do.
I have not had surgery. I have had problems since birth, but was not diagnosed until I was in my 30's....almost 18 years ago. I have many, many symptoms, but have luckily found doctors that listen to me and have prescribed the medicine I need. It's not perfect, but I also know my limits and don't push them, try to stretch, meditate and eat well. Finding doctors to treat the pain associated with chiari, and the other issues I have, seems to be an problem with some. I see a pain specialist, neurologist, as well as a rheumatologist. I also I'm terrified of the surgery, and can't imagine having my neck hurt even more than it already does.
I have had Chiari since I was born but the drs didn’t diagnosis me with it till I was in my 20s I’m in my 30s now. I have not had the surgery done. I make it day to day with my meds, exercise, knowing my limits, and eating healthy. I feel as long as I can control it with what I am doing there is no need for surgery, but if it was to get worse I would have it done. I help that kinda helps.
Michelle