Feeling A Very Sharp Pain In The Back Of My Head Near My Neck

[Maxine]

There's sharp shooting pain in the middle lower back part of my head. This has been going on for a while, and the rest of my neck and back are in a lot of pain. when the pain in me head gets really bad I start to slurr my speech, and get really weak.

Anyway, I'm not sure what to do, as there's nothing locally as far as good medical care for this, and pretty close to ZIP on neurological following.

Earlier tonight I got that old familiar feeling of adreanaline rushing into my chest. I'm really struggling, and not sure what to do. I can't seem to get into Dr. Grubb's office, but not sure what he can do for me anyway. I just need a good neurologist who understands the secondary issues to EDS and spine instability, and compression on the brain stem from instability combined with enlarged right vertebral artery. It hurts even more if I turn my head.

along with this I have crackling in my left ear. Another thing bothering me is when I get relaxed, and almost fall asleep I get restless body, not just restless leg, but RESTLESS BODY! I rock, and rock until I doze off. Very weird. It feels like something is crawling on my back, and I have an electrical feeling.

Struggling to hold my head up.

Just complaining, and wish I could find a good neurologist. Made an appt. to see my psychologist this week because I need halep sorting all of this out. Still waiting for insurance to clear me to be admitted to hospital for virtual colonoscopy prep., and scared of what will be found because guts aren't working well either.

Wish things were better, but feeling very fortunate to have my beautiful grandchildren visit us today.

Maxine :0)

[mjan]

{{{{ MAXINE }}}} I am so sorry you are struggling so.

Yes its hard to find the right docs..and a neurologist even harder. I dont think they are getting training in this kind of work.

BUT>>> I wanted to tell you how ADORABLE your granddaughters truly are...like I HAVE to tell YOU!!

I once found this amazing doc.. a chiropractor who uses a finger..along the nerve pathways.. gentle..gently unblocking the nerve bundles to allow the brain to do its thing in healing. Anyway..my point is.. I said a prayer to be guided spiritually to the right doc just for ME and what I was going through..closed my eyes.. and POINTED...finding this miracle man. He corrected my lower spind when even the neurosurgeon would not touch me.

Just thought I was ADD that ...PRAY.. ask for what you need.. and watch and see...ya never know.

Jan

[mjan]

OH.. I meant to say I POINTED in the YELLOW PAGES with my EYES closed and found this amazing doc..

[janiedelite]

Hi Maxine,

Thanks for sharing the pictures of those beautiful little girls! I hope they brightened your spirits today. I agree that your neck pain and strange sensations certainly sound serious. I know you're trying SO hard to get the help you need. I'll pray that it comes quickly!

Janie

[mkoven]

Hi Maxine,

As you know, very few docs are well versed in there issues. If it were me, I would call Nazli McDonnell amd ask for advice. If you have a hard collar. I would see if it quiets things down.

Feel better!

[potsgirl]

Dear Maxine,

I'm so sorry that you're having these problems with your head and spine. I really do think you need to see a good neurologist - some of your symptoms sound pretty serious and scary. Thanks so much for posting those adorable pix of your grandkids. We all can use a smile!

Hope things get better for you soon,

Jana

[Maxine]

Thank you for your support and replies--

Mkoven, I already talked with Dr. Mcdonnell, and emailed. She has not been able to find anyone who will take this instability stuff seriously. She is concerned also, but feels just as we do. Dr. Tinkle even talked to her at the EDNF conference. Dr. Tinkle recommended Dr. Durrani who is an orthopedic surgeon who has helped many people with c1-c2 instability. However, I have the enlarged vertebral artery and pannus growth on the odontoid bone. The enlarged artery needs to be followed by a neurosurgeon.

It's startling how such a serious and obvious thing doesn't get the proper attention it needs from neurologists and neurosurgeons. If we can send men into space, and land on the moon--------WHAT IS THE HUGE SCIENCE IN INVENTING NEW TESTS THAT CAN SEE THIS INSTABILITY DURING MOVEMENT? What are they going to see on an MRI when a person is laying flat and the head locked in one position. Even on flexation and extension it's difficult to see.

My orthopedic surgeon knows this, as he also knows the mechanics behind the instability, and how it's related to WEAK connective tissue. IT REALLY ISN'T ROCKET SCIENCE--------------------IT REALLY ISN'T.

Even my PCP is taking it seriously which I didn't expect, but feel blessed he does. He is going through all this hoopla trying to get the virtual colonoscopy because I'm not stable. I'm just NOT. My headache hasn't gone away yet, and I usually can shake it.

Well, on the 15th I'll have the EMG study at the Cleveland Clinic. I'm pushing them hard to understand this, and hopefully the squeaky weel will get the greese----------------or the listening ear-----------------something..............

Thank you so much for the compliments on my grandaughters. Kaela loves her new sister. They are half sisters------Kaela is 5, and starting kindergarten, and Mackenzie is 18 months old.

Can you tell I'm a proud grandma.

Here's Mackenzie trying my collar on;

She was fascinated with it, and wanted to put it on-------------And Kaela did the same thing when she was that age.

Maxine :0)

[mkoven]

I'm so sorry to hear so much is going on. I can totally relate to the frustration and well as many of the actual health issues. I haven't given up, but know that the majority of doctors aren't going to "get" it, let alone know how to treat it. When I saw Heffez, he was very cautious about attributing causality-- I have multiple abnormalities--some chiari, some stenosis, a tethered cord. he didn't see the upper cranial instability, but another nsg saw it. anyway, any of these issues alone can cause problems, and it's hard to determine which ones (alone or together) are the culprit. so if i had surgery, what should be addressed, and in what order, to have the best chance of making me better? I don't think I'd want to have someone just cut anything cuttable. I know I'm in no hurry to get cut, as I could end up worse off. But I would like someone knowledgeable following me. And sadly, with our combo of issues, there aren't many out there. I was also given the name of Arnold Menezes in Iowa City and Oro in Colorado. I don't know whether to try to see them, if it will only create more chaos. Plus, it seems like surgeons don't necessarily want to manage or "watch" people who are trying to avoid surgery. I will be putting in a call to my eds geneticist to help sort things out myself. In the meantime, I'm bracing when I feel most symptomatic, trying to maintain perfect posture while asleep and awake, and trying to keep my muscles doing their job to help compensate for the weak ligaments. I'm thinking of trying alexander technique which i hear is all about learning to move without compressing the spine.

it does seem like a lot of the people describing their experience with cranial fusion, tethered cord surgery, chiari surgery end up having a lot of other troubles after surgery, and needing a lot of repeat procedures. in terms of the cranial-cervical instability, Dr. Heffez said that he thought that the fusion that some are proposing is far too extreme except in the worst cases. I don't know what to think.

[Maxine]

Thanks Mkoven,

I'm sorry your dealing with a simular situation. I like Dr. Heffez, and I think he's conservative. Maybe he can keep a close eye on your situation. Don't you live closer to his office in Milwaukee? It's a 6-7 hour drive from Toledo for us, maybe less depending on Chicago traffic. He's not one to push surgery. He understands I don't want surgery either. I want to avoid it, but with the enlarged vertebral artery I'm not sure it possible, because having this combined with the instability isn't good, as the enlarged vertebral artery is being kinked from the CCI.

I already had surgery in 2002, and I remember the feeling when I woke up. I hated the effects of the anesthesia, so I really hate the thought of surgery. I didn't have any significant pain after surgery, and the morphine pump they gave me wasn't used. I either have a high tolerance, or anterior cervical spine surgery doesn't cause much pain. I know a fusion of c1-2 is done posteriorly, and there's much more pain involved from what I'm told. I don't tolerate narcotic pain meds well, so I'm not sure ehat I'll do. I sense I'll need surgery because I'm pulling muscles and ligaments in the left side of my neck, and getting terrible spasms deep in the tendons. The EDs is really doing a number on my neck, and I can't strengthen it due to the instability.

It's hurting on the right side of my head now, and making my face feel mildly numb.

Maxine :0)