Today has been a horrible, awful, upsetting and eye opening experience, I had an appointment with my neurologist at ten this morning. As some of you may know from my last complaint/blog/question I've been pretty concerned about the random swelling at the back of my neck with severe pain and a host of other issues we're all familiar with, I'm going to get very personal here and I apologise but I'm terrified because I've been losing control of my bladder, I'm so embarassed but it was really scaring me and the pain was excruciating all down my right side, the power went and my neck has started having violent spasms that literally make my neck snap back. Terrified doesn't even begin to cover it.
So at the neurologists I brought my mam in with me and I told him all this and I pointed out the place at the back of my neck where swelling was happening and explained all the symptoms at this point I looked up and realised that the entire time he didn't have the decency to so much as look away from his keyboard while I was showing him and after belittling me for around half an hour, now here's where it gets interesting, the neurologist has determined that since I had decompression surgery the Chiari was gone and had nothing at all to do with anything, he has now decided I have something called "Hemiplegic migraine" and so he has now decided to stop all the medication that all the other doctors have put me on.
I rang my neurosurgeon after I stopped shaking with anger so I was put through to him and he has ordered a scan to be done as soon as it can be arranged and he's telling me basically the polar opposite as the neurologist, the NS reccommended the tablets I'm on and a different neurologist who worked with a load of other doctors in rehab stuck with his tablet choices and added a few of their own. Now he's stopping all of them and diagnosing me with something completely different and I'm just looking for some advice really because I really have no idea how to deal with all this.. I feel like the progress I've made that made me feel like I was kind of able to tread water has now been torn to shreds and I'm after being pushed into the deep end again.
Really sorry for the long complaint but I can't really talk to anybody else about this and thank you for giving people like me a place to blow off steam because I'm purely jaded at this point!
Thank you so much, I've made an appointment to see my GP on Monday, I'm extremely fortunate because my GP has accepted and tried to help me since day one, he has dealt with me since I was a baby and knew that I had never had any neurological symptoms of any kind before I had my accident. He has been my biggest supporter and has always listened and always has something kind and supportive to say. He can't help from the medical side much but between him and having people to talk to on here it really helps! I was just so angry when at the end of the appointment the neurologist said very flippantly "well you look good if that helps!"
I'm just really confused because I'm being told opposite things by two people who are supposed to be experts on the brain but they can't even agree on what it is that's happening to my brain! I think the most difficult thing about living where I do is that there is literally no choice in who treats you because nobody has heard of either of the supposed culprits! Thank you so much for your kind words they really have helped, I can't even begin to tell you how comforting it is to have somebody else say what I was thinking, you've made a massive difference!
Go raibh maith agat! (Thank you in irish!)
XxX
Emmaline said:
We totally understand...most NL blow off Chiari symptoms and blame other illnesses for the discomfort. So many deal with this before and after surgery...I'm so sorry.
Have the scan done so they can see what's going on.Forget what anyone has said so far...I know that is a stretch, but let's wait for the scan results. Hang in there and feel free to vent whenever you need.
We prefer Dustin’s GP. When his symptoms rturned we went to every specialist in the state that knew anything about Chiari. Most said they couldn’t do anything because his decompression hadn’t moved, and to go see another doctor, and one told us first it was a vit B deficiency, then it was psychological (the neuro psychiatrist said he was completely sane and handling his condition pretty well, and he felt it was purely the Chiari) then wanted to run a very stressful test that has a high negative rate for Chiarians. We declined, and now his GP helps us manage his symptoms, and even went so far as to do his own research into the condition. He says if we ever want to see more specialists, with all of Dustin’s other issues the only place we could go is the Mayo Clinic, and Dustin couldn’t manage a trip that long.
Usually NL fail Chiarians. I have many personal horror stories and have heard many from others.I know you are limited in your location and healthcare system, but always go with a NS then I would recommend a Pain Mgmt. Specialist. My PCP is incredible because he has learned with me & is my friend. Most PCP's aren't educated in CM at all. Please though do not give up and know you are not alone.
Get the scan done and then go from there, I think is your best step. Your not the only one who gets this type of treatment from doctors and it's ridiculous! I'll be praying for you!
I agree with all above-get a scan done ASAP. I probably would have gone to the ER by now. Is there a way you can get to a larger city where the doctors might have been more exposed to us chiarians?? I would also(as previously stated by others) forget everything both NL and NS have said so far. Trying to figure out who is right will make you crazy and until they do a scan no one really knows. The flip comment by the dr would have probably put me over the edge-so since you’re not writing this from jail, you are a better person than I! I cannot stand when people say such idiotic and frankly, cruel, things!! Good luck and please keep us posted!
I have asked Dr's to check out this site. My local dress are clueless. Find v yourself a Chiari specialist. I did and I am so thankful. Just the acknowledgement they give relieves a bunch of stress.
You shouldn’t feel embarrassed about anything, ever. It has been my experience since decompression that it really traumatized my neck muscles and yes the pain is unbearable while the Dr’s tell me it doesn’t hurt at all. Rest assured you made it through the hardest part. Obviously you trusted your n’s enough to let him go into your brain with a knife and that is behind you. Now he is the one making the best decision. I don’t know how it works in Ireland, but here the doctor works for you, and you can fire him. I would trust solely in your neurosurgeon, and take the muscle relaxers they gave you. It may not stop the neck spasms, but they do help. I wish there was more we could do
I’ve had this trouble since my diagnoses also. It seems no one knows anything about chiari! (Other than my consultant neurosurgeon, but I’m more likely to be invited to tea with the queen than to an appointment with him. I’ve only met him when he did my surgery) So, I feel your worry. I try and ignore as much as possible until scans are back and have been looked at by the elusive NS. I know this doesn’t really help you much, but you are most definitely not alone in this.
That's awful, so sorry. If I were you, I would just see the Neurosurgeon. A Neurologist is not the Chiari specialist. Stick with the doctor that's is trained in Chiari and can treat you accordingly. It's just my opinion but I feel like your wasting your time and energy with the neurologist.
like the others, i agree with what they have said. Get the scan done. In my personal opinion, i would keep taking the medicines that are actually helping. I have done that in the past when doctors tell em differently. MY PCP has been just awesome as i have been going to her my whole life. They know me well enough in there that when i say something is definitely not right, they try to find what it is. If you can't find any Chiari specialists nearby where you could drive to, is that any within a days drive that you could send a copy of your results to? that is what i plan on doing... once i get the time to drive down to see them. Either way.....good luck! Hope things get better for you!