What do you do when there’s nothing more to do?
I’m trying to find the words to express the despair I’m feeling, I want to be angry, but there’s no one to be angry at, I want to cry but it’s me that comes out second best, I want to scream from the roof top for someone to please please please help me but no one hears. I barely have the strength to write this, to reach out for help, to pray that tomorrow will bring some good news.
I’ve put my heart and soul into staying as healthy physically and mentally as I can, I know how important this is in managing this condition but I’m out of strength, it’s so painful, so tiring, so scary, so destructive.
I was diagnosed almost 3 yrs ago after severe concussion through a CT scan. I can’t have a MRI due to a pain device I have implanted. My pain specialist won’t remove the device (it does help a little bit and it was problematic putting it in), my Neurosurgeon can’t move forward without having more info needed from a MRI, my GP is pulling his hair out trying to help me which I am so incredibly grateful for. He’s contacted them both to get them to liaise and come up with a way forward but so far nothing. It’s taking so much time, my body is getting weaker and weaker, my mind is growing less able to fight the fight that keeps me strong and really I’m just praying I fall asleep tonight and don’t wake up in the morning. Unless our Lord above has plans that’s unlikely to happen.
I’ve even thought about jumping on a plane and flying to America, turning up at a Neurosurgeon experienced with Chiari and begging them to please help me. I don’t think I’d make the flight. I don’t know what else I can do to change this. I don’t know how to make them listen, to see this is really serious. I feel like my body is shutting down and there’s absolutely nothing I can do to stop it. Meditation is not even helpful at the moment, it takes more energy than I have to give. I’ve spent most of the day using relaxation techniques to try to keep the pain and nasty sensations at bay. My legs feels like they’re going to collapse underneath me, my arms/neck/head are burning so badly - it’s almost like frost bite over me entire upper body. My feet are buzzing but numb, the base of my head is pounding, my ears have a permanent ringing, my fingers have painful pins and needles though I can hardly feel them. Pulsating Spinal canal - from my coccyx right the way up into my head.
This is so unfair, I understand my medical team are all doing what they believe is the right thing for me based on their speciality and they are very busy and I’m not the only patient needing attention.
I’m destroyed, I don’t know where else to go for help 
Hi,
I’m so sorry to hear of your situation. I had Chiari decompression in 2014. I continue to have burning sensation just about all over from time to time. I’m blaming part of this on cymbalta. Please don’t touch that drug. I didn’t like gabapentin or lyrica. Can you have a CT Or a lumbar punch to measure your csf flow? Are you seeing a neurosurgeon. If not, schedule an appt. Get to a good holistic or integrative medical physician to help you with pain. I have not found pain clinics helpful at all. Try these vitamins- magnesium at bedtime for sleep and muscle spasms- BComplex vitamins and lots of B12. Cherry supplements for nerves- flaxseed oil for inflammation don’t forget multivitamins go to Chiari U.K. On FB a lot of knowledgeable people there. Just some suggestions. I went to Hospital Fri and the gave me morphine and it didn’t do anything. Go to vitamin store and explain your situation and they can give you correct combinations. Not saying they have the answe but may help. Drugs cause more symptoms. Hope you find some answers.
Thank you so much for your response apple62. I am under a Neurosurgeon who is the best in Australia he specialises in Chiari and Syringomyelia, in fact I think Chiari is the main thing he does. The problem is he’s over the other side of Australia (a five hour plane ride). You have to be able to have the golden key to unlock the padlock (his admin) just to get a email to him. In saying that I totally understand he’s so incredibly busy and in high demand. My pain specialist is a private one not attached to a pain clinic. He is amazing I’m really lucky to have him involved in my care.
Things are looking up however, just today I received a phone call from both their admin managers advising a conference call has been set up for Monday and they will both contact me afterwards. In so relieved they are going to talk. It’s so horrible at the moment. I’m really scared because of how much things have deteriorated in just a week. It’s really frightening, especially when theres no plan as to what’s next. My pain spec is waiting on a phone call from the gurus at the ckmpant who makes the pain device I have implanted. They are in America and he’s going they might be able to get around the MRI. There might be a way the MRI can happen if certain procedures are in place when I have it. Fingers crossed there is some good news for me on Monday.
Thank you for the advice on herbal supplements, I do take a lot of those but there are a few that I don’t which I will definitely look into.
I’m so grateful for people’s support on this site. This is by far the hardest thing I’ve ever contended with, and I’ve had my share of things in 45 years. It’s comforting to know the greatest level of support comes from strangers at their keyboards from all over the globe. I can’t thank you enough, it’s kept me afloat when it felt like sinking fast. I only hope I can help others in the future as much as those have helped me. Feeling blessed…
Hello…I know I cannot help you but I just want you to know that you are heard…I am struggling too but not anywhere near what you are going through. My neurologist and neurosurgeon don’t believe that my chiari is causing all of my symptoms. I have reached out to a couple specialist…they are my hope. This malformation is a MONSTER! I pray that they do find a way to get that MRI and get on with helping you. I am so sorry for your suffering.
Thank you so much, it certainly is a monster and it is soul destroying to have the medical profession shrug you off. I hope your search for someone finds a fabulous NS who is willing to try to help. I’ve fortunately found the right Drs after going to a couple which I’m so happy about.
I had surgery a couple of weeks ago to have all but my lumbar leads and devices of my pain stimulator taken out. Prior to surgery I was told by Radiology if I had them out I could have a cranial and cervical MRI. This was exactly what’s needed for my NS to proceed with further treatments as the stims have been a thorn in my side because I can’t have MRI’s.
One would hope this has a happy next chapter…
I hadn’t been home an hour from an overnight stay nursing 4 decent sized wounds when I got a call from Radiologist. Cut a long story short they can’t do a cervical MRI after all! I understand that if the risks are high then they can’t do it but I’d just had surgery under the knowledge I would be able to have a MRI on the basis they were removed. It was a apparent miscommunication they thought I only needed a cranial (even though the referrral says cranial and cervical). I basically had surgery for no reason.
So, I now go in on 29th Sept for more surgery to remove the lumbar device. I want it all gone, every last wire, battery, staple, clip, stitch… I want it gone! It’s been horrible, I’m cross about the oversight but had to get over the anger and upset quickly or the headaches are worse. So, I take a deep breath and I carry on…
Thank you for replying, I hope you are as well as can be under the circumstances. If I can be of any support please don’t hesitate to share your story with me. Together we can conquer Chiari
Sally, wishing you the best for your next step. It sounds like you have had a rough time with the misunderstandings and all, but it does sound as if you are basically in good hands. Please let us know how things are for you as you get this resolved. (And you will get this sorted: you have to think positive thoughts.)
Hang in there, Sallymagint, and hang out here.
All the best to you
Seenie from Moderator Support