I have recently had a app with a new neurosurgeon who indicated he was happy to decompress in a couple of weeks. My symptoms are becoming quite severe and whilst I really want to feel better than what I do now there is some doubt hovering over a confident decision. My pain specialist and neurosurgeon don’t believe either one should be treating like they are. Whilst neither had said they dislike the other it is very obvious there is no love loss between them, in fact they won’t even talk to one another on the phone.
How do I know that they have my best interests at heart? It may seem like an odd question and I’d like to think they definitely did but I’m not confident. Two professionals both good at what they do, yet their opinions about how this should be treated arsvery different and they are not shy of saying the decision of the other is wrong. I sobbed when I saw my GP and said when I’m feeling so horrible I shouldn’t have to be worried about my two major specialists, not liking one another and not wanting to talk to each other. It’s made me feel unsure about both approaches. I’m really desperate to get some relief from pain/symptoms but I don’t want this to persuade me to do something I’m not 100% happy with.
Has anyone else encountered similar and how did you deal with this - or does anyone have any suggestions to help me work through this.
Thank you in advance for your support.
Hi,
Sorry, you are having such a difficult time. Would you mind giving me a little more info.
How big is the Chiari and are your meds helping. What type of symptoms are you having? What typically happens is the Neuro understands what is going on. The other docs probably don’t. Once u have been released from the neurosurgeon you are on your own unless your fortunate to have a primary that will do the research. And help you.
Hi, it is measured at 15mm via CT scan I am unable to have a MRI which I don’t know whether I’d a issue or not, differing opinions between specialists and I don’t seem to be able to get a straight forward answer that leaves me feeling confident as to which is correct.
When I saw the neurosurgeon he asked me what were my symptoms and I told him I had written them down as my memory is horrendous and I lost track mid sentence what I am saying - plus there’s so many of them and I don’t know what is relevant or not. He told me he didn’t want me to read if he wanted me to tell him. I hindsight I should have just listed them from my sheet of paper but he was making me nervous, he was quite flippant about not being Chiari but changed his mind when I got upset. I felt like I shouldn’t have had to be upset for that to happen.
My list of symptoms is long and they are becoming more debilitating. Severe headaches at base of skull, cluster headaches with sneezing, lifting, crying/laughing etc… leaning forward to brush teeth/eat/tie shoes is almost impossible. Severe weakness in hands/feet/lower legs. I cant feel my outside of lower legs anymore eg hot water can’t feel/touch, I can feel feet a bit more and above knees, hands left hand numb weaker eg. can’t hold a fork to cut food etc… same with feet they have altered sensations sometimes feel like they are burning other times freezing cold or numb, numbness front of shoulders/neck/face, pain in neck/arms/legs/back, balance terrible have regular falls (I now have a walker), co-ordination and memory affected worse when fatigued, fatigue is a major problem it gets so bad from numbness/weakness that I can’t hold my head up and have to use a neck brace to support it, surging up/down spinal canal into head, severe pressure cranial and in ears (so much pressure in ears), tinnitus. These are the main symptoms which affect me daily, there’s many more which aren’t quite as bad. Many symptoms of weakness/numbness have got progressively worse over time - the areas affected have spread and it doesn’t ease up, its permanent which scares me - when/will it stop and is the damage irreversible.
Medication has just been changed again. I have a awesome gp who is into this and my pain specialist is also great - when I can get hold of him (I do understand he’s busy though). Latest meds for pain Ketamine lozenges, Lyrica (daily low dose) and Methodone, my GP has changed meds (he is so fantastic) and I think we are in a ok pain control stage at the moment which is great. If it was just pain I was dealing with and not weakness/numbness that would be a totally different thing. It’s very debilitating and I’m extremely fatigued which makes it harder to stay on top of it. I need someone to advocate on my behalf because I can’t do it anymore. Even at appointments I go in with a plan, write it down and then get off track and leave without asking things. My GP has done been a advocate to a certain level but I can’t take him to my appointments and he’s a busy man, he has already gone above and beyond. I’m just so exhausted. I wish I’d pushed the Chiari earlier than now but each time I did it got brushed off until things got so bad and now I feel I have to push it because symptoms are so bad, but it’s now more than ever I don’t have the fight left in me.
If I could find a neurosurgeon that I had more faith in I would put my life in his hands and hope for the best. I’ve had enough
Have you made an appointment with the neurosurgeon or did I miss that? My Chiari was 13mm. I had surgery in 2014. Like u I suffer with neck pain, head heavy, balance issues, eye, ear and back pain. I’m to the point I’m having burning just about my entire body. My throat is sore and even laying down my neck muscles still pull. Oh, forgot stomach pain. I’m thankful I can walk. I’m in Assisted living in a home. My husband lives nearby. Please let me hear when u have an appointment. Do you know a doctor? I used Dr. Barrow at Emory University in Atlanta,ga if u would like to look him up.
HI, I had an 8mm herniation in 1995 with decompression being a 4’ x 4’ piece of skull removed from below the ears and almost side to side from the ears. I am not sure if this kind of major decompression is done anymore. The doctor I had, Dr. Milhorat, he lost his license to do Chiari surgery anymore.
Where are you located? Knowing this could help me and others to point you in a direction of another Neurosurgeon. I went to probably 8 neuro before finding one that even understood Chiari. There are some very good Chiari doctors at the Clevveland Clinic in Ohio.
I now am slated for major cervical fusion surgery of4 vertebrae and lumbar fusion surgery of 8 vertebrae. I was in 7 major motor vehicle accidents and one being hit by a train so my history is almost quite like none others. The chiari surgery did help with many of the symptoms.
Hope this helps some and would like to hear back as to your location.
Take care,
Barbara
Sally,
I feel your pain! Literally! For 2+ years, the only docs that I was being treated by were Pain Management docs. The reason your two specialists are fussing with each other is 'cuz one type of doctor wants to treat all ailment MEDICALLY (meds and all) while the surgeon wants to treat all ailments SURGICALLY. These two kinds of doctors butt heads all the time. They both can be right - depending on the circs.
With Chiaris, however, I would have to way that surgery is going to be your only relief. My Pain Management docs found that the only meds that could stop the severity of my CNS pain were opiates - which sounds like you are getting into. That’s a very slippery slope. You will ALWAYS need more and more and more to get the same relief over time. NOT good for Chronic pain - and Chiaris is a very chronic condition - until sutgically decompressed. I was up to such high doses of opiates after 2 years, I ended up in a psych unit!!! Terrible. You don’t want to go down that road.
Only a good Chiari surgeon will be able to relieve the ‘pinch’ that’s going on at the base of your skull. Do a good Google research and find one if the surgeon you are currently seeing admits he doesn’t do Chiaris!!! Meds will only just mask the pain for a while - treat the symptom but not the problem.
Yes thank Thanks all for your reply, I live in Western Australia and have seen two neurosurgeons so far. At the time I saw the first one my symptoms were way less severe and it was decided there was no need to do anything. Since then things have regressed significantly and things are tough. I have a appointment with a neurosurgeon specialising in Chiari in 12 days time and I’m really praying and crossing my fingers, toes and anything I can, he can offer me hope that there may be something better for me than what the current situation holds. Fingers crossed, can I please ask that you have me in your prayers, I need all the help and hope I can muster right now. Thank you again for your kind words and support 