I am new member, I was diagnosed with CM1 in Oct 2014 - I am from the UK (south of England) I am unable to find any website or support group in the UK that able to help me with the information I need to know, my GO (Doctor) and Neurologist very helpful but they were very honest that they are not really sure how to treat me a part from passing me to the Neuro Surgeon - I am seeing him on the 9th of Sept, have you guys have any suggestion what do I need to ask..I knwo that there is no cure a part from Surgery..but is the surgery would really help..? the pain is just unbearable..I have to resign from my work due to my condition, I am unable to walk properly and just impossible to live a normal life..I have read some of your discussion here..but can you really explain it to me.. if you can choose.. would you have the operation or would you just put up with the pain..? thank you very kindly for the tips..is there any one from the UK???
My 17 year old daughter suffered terribly for YEARS… She was finally diagnosed at the end of June, had surgery mid July and hasn’t had a headache since! My opinion… Do it yesterday.
You don’t need to suffer any longer. Just make sure that your Neurosurgeon has done MANY Chiaris. I’m praying for your speedy recovery. Natalie.
Put up with the pain, yes the surgery did help my headaches, and helped with my other symptoms. I had surgery about 5yr ago for the first year I thought I was cured. I felt great maybe that was just because I had so much pressure before I thought my head would explode some days. Then the neck pain started, I have tried every injection for nerve pain, surgery, nerv blocks, ect. Which all of those are extremely painful. I would get relief for a few weeks until the medication would wear off. The steroids in these injections caused me to gain 100 pounds in 1yr. So I think I just traded one type of pain for another. Make sure you ask your dr what are possible effects of having the surgery then decided if you would rather deal with what you are now or possibly something else. I wish you the best of luck.
I really think it depends on your age, your doctor and how you want to live your life and if your symptoms without surgery will allow you too. My child was diagnosed and had decompression surgery at 21, almost 3 years ago, and now has a very successful career many said he would never have. His surgeon is very experienced with Chiari at an adult level but spent many years performing pediatric neurosurgery. I now have also been diagnosed with chiari at almost 50. I feel my symptoms came on from a neck fusion surgery I had. I have other neck problems and still haven't decided or finished testing to see if chiari or neck surgery is where I will be going. At that time I will take everything into account when I make that decision. But just know there are people that have gotten relief from the surgery with outstanding surgeons. It sure sounds like your symptoms are taking away your life. I hope you find relief some relief soon. You are not alone in your struggles.
My son had decompression surgery about 18 months ago and he is 90% better and is almost normal again.
However he has been getting occipital nerve blocks to help his minimal pain. My advice is to have the surgery and you will feel much better. your quality of life will be much better.
Hello, I am a new member as well. I had surgery Dec. 10th and Dec 12, 2013. First surgery was trans-oral decompression thru my mouth. Second was fusion at back of head, rebuilt my cervical spine. I would not have made it with out surgery. I was put in a medically induced coma. Surgery was at the Cleveland Clinic, in Ohio, which is a research hospital. My pain was horrific, I told my primary care doc., I felt faint and clammy (Cleveland clinic advised that is the kind of pain where you are going in and out of shock.)....all the time. I was falling more and more frequently, all the time prior to surgery. Once I met neurosurgeon, he explained to me, one of the falls , I would not be able to "get up" ...and would be immobile the rest of my life. It has taken a year and a half to recover. However, due to my falling, I had torn a rotator cuff, bicep, and tendons on my shoulder. That was done end of August, this year. I'm hoping that will take care of the pain from that. Bottom line: I would say have the surgery, only from a surgeon who does this kind of surgery. Check on the Internet in all of the UK, hopefully, you can find a research hospital that is very knowledgeable. I had to travel to a different State to obtain help. It was a hassle and expense, well worth it in the long run. Keep the faith. Sophie
Chair in UK,
I believe on this site or on Facebook there is a support group for Chiari. I can tell you that the surgery saved my life. I had symptoms for over 5 years, and had many of those “drop attacks” Sophia discussed. I had surgery 17 years ago and it saved my life as my quality of life have decreased with not being able to work or drive and in constant pain. It took me 18 months of recovery with one surgery and one week in the hospital; but saved my life. I encourage you to see only a specialist who does this procedure.
My son was diagnosed with Chiari and Syrinx at 14mos old. He had the surgery immediately and it made a huge difference in his symptoms. He was in constant pain and could not walk without falling over. His symptoms were severe and without surgery, the Chiari would have killed him. The recovery was long and he had to have physical therapy and a second surgery but all in all he is now a functioning happy little 5 year old. If your that bad, get the surgery. Make sure you have a neurosurgeon that specializes in Chiari and has done many of the surgeries.
Hello! I am also from the uk( Midlands) I was diagnosed in December 2011 a few days before Christmas (an early Christmas present lol) I had a 22mm herniation and a syrinx that went from c1 to t7. I had a lot of symptoms and a lot of pain, I also struggled with my job and ending up going off sick and eventually leaving that job! I had surgery in May 2012 on the advice of my neurosurgeon as he said the degree of problems I was already having was going to get worse and because of the length of the syrinx I was risking permanent disability in my future! So I went ahead and had the surgery, which to this day I am so glad I did! By no means am I symptom free and I have good days,bad days and a few rare awful days but a massive improvement to what I was! I am even back at work although I can only work 25 hours a week! I do have a lot of nerve damage from the syrinx but truly believe that without having the surgery my quality of life would be a 100 times worse! However everybody is different and everybody has different outcomes! My neurosurgeon is Mr ashpole from Nottingham queens medical centre and he is amazing and really knows his stuff! The neurologist I saw before I was referred had no clue and even admitted there was nothing he or the first hospital I went to could do anything for me,so it really is hard to find someone who knows what to do! I would advise writing a list of questions down for your appointment so you can make sure you get all your answers you require! No question is to little or to big so don’t be afraid to ask, you have the right to ask everything! Surgery for me was ok but recovery was hard due to complications it took me 18 months to get properly back on my feet, but again everybody is different and I have spoke to people who have gone back to work after 3 months, there is no set rule to how you should feel or what you should be doing, there is no set time for your recovery! If you have any other questions please feel free to ask and I wish you all the best . Katie
Dear Katie thank you for the reply, how did you get to Nottingham if you live in Birmingham? did you ask to be referred to them and how did you choose your Neuro Surgeon? Are you still on medication at the moment?, are you still being managed by your neurologist/neurosurgeon. What kind of question should I ask?...... Thanks..thanks again as well for every one who had responded.
Go with the surgery. ACM has no meds except surgery. Tho the symptoms are recurring. I had my surgery in 2011. I thought everything would go well. But now am feeling the same symptoms prior to my surgery. I also do not know what to do. I just pray hard everytime I feel the pain.
So, your symptom the same as before surgery? - are you going to have another surgery then? mind you it is 4 years ago, do you think the skull growing..just like if we have in growing toe nail?..Do you take any pain reliever for your pain? iqueen I will pray for you..to hope that it will be sorted soon..I read some have to have it done twice?
Hi b2wc I actually live in Burton on Trent and the first hospital was queens at Burton! It was the neurologist I first saw who said he needed to refer me so I didn’t actually have to request someone different as he said there was nothing him or that particular hospital that could actually do anything for me! Thankfully the neurosurgeon I was referred to was Mr ashpole at Nottingham and the neurologist said he was one of the best, and as soon as I had my first appointment with him I had so many questions finally answered and my mind put at ease! He explained everything to me and actually took the time to listen,he truly is amazing! I am no longer on medication,prior to surgery I was on amitriptyline! For the moment I am able to manage my pain with regular medication, I also use hot and cold therapy which he suggested! I am no longer managed by my neurologist as my neurosurgeon took over my case, and I am still managed by him, he said I would remain managed by him and Nottingham hospital for the foreseeable future, if I have any problems or new symptoms/worsening of symptoms I am able to make an appointment to go and see him! The kind of questions I asked were what the surgery actually entailed, recovery time, what to expect during recovery,how they would manage my pain,would I see an improvement in symptoms,what the risks were and all of them actual questions. Katie
Hi Katie, you are so lucky, I just came back to see my Neuro Surgeon he was very honest and thoughtful he explained to me every single detail in more so the risk of having surgery, he also said there is no guarantee that after operation that I will be cured sometime the symptom can come back..but he also suggested me to get second opinion and give me the best Neuro Surgeon in the UK which is Mr Graham Flint (which I heard his name quite a lot) he is in Queen Elizabeth Hospital in Birmingham - so at least I know now, I am going to google it..and get my gp to send letter to him, when I asked him today about what can he give me to relieve this pain, he told me that I have already got everything that my Neurologist given me.nothing he can prescribe that really any different..he also advise if any of the drug does not relieve the symptom I shouldn't really take it anymore as it is only causing more side effect.just to try to meditate and breathing exercise..so that is what I am going to do now..to get second opinion..but like you said..definitely operation..I might go to Birmingham..its about 21/2 hours from where I live...we can meet up...L>O>L did Mr Ashpole told you the risk after the OP?
Hi I think going to see Mr Flint is a good idea! In regards to the operation only you can decide what’s best for you with the advice of your doctors! This was how I made my personal decision which was to listen to my surgeon and weigh everything up! Mr ashpole told me the risks about everything,about not having surgery, the actual surgery and what came afterwards! At no point did he say I would be cured,because it is not curable,it’s about helping to manage your symptoms and trying to give some relief in any way possible! I choose the surgery for myself because me and my surgeon felt I was at point where it was the right time to do it,of course there are no guarantees with the surgery and I have spoke to people who felt it didn’t help them! But again everybody is different and responds differently, thankfully I was one of the fortunate people where I felt it really helped me! However all my symptoms are still there,however they are not as severe as what they were and I feel that it gave me more days where I actually feel human lol. Katie
Have you heard about Mr Flint before?, I might like to ask my gp to write to Mr Ashpole as well - the more I speak to them the better and feel confident I am- at the end of the day it is your health isn't it
What percentage of difference is it in your condition between before and after operation in term of the symptom in scale of 1 - 10 , 10 will be the worst...how do you manage them now..if you still have it?
It's nice to hear from you again. My Neuro advised me to have my MRI again which I haven't done so. If ever I won't submit myself for another surgery coz my NS told me that the 1st surgery was risky. ACM is not curable. It progresses as the person gets .older. I stopped .taking pain reliever coz am afraid my kidney would be affected. I really do not know what to do. hehe just bear the pain and watch what's next