help for lindz, you definately need to look into Chiari Malformation! Her symptoms sound all too familiar! I have had two mri's that said "low lying cerebrial tonsils" but i really have Chiari Malformation and will be have surgery in may. I will warn you though, most drs will say its an insignificant finding unless they are a true chiari specialist! And Londeres is right we do have a great chiari forum here on medhelp. You and your daughter will be in my prayers! Blessings ~ Shannon
Oh, I feel for you and your poor daughter. I think your daughter's situations sounds a bit different from Nico327.
The CT, showed underlying cerebellar tonsils or do you mean low lying cerebellar tonsils?
The MRI was ok? I am questioning how was the CT showing something going on with the cerebellar tonsils and the MRI not? Does not sound right. If the CT showed low lying cerebellar tonsils there is a possibility this could be a Arnold Chiari Malformation; the symptoms sure do sound suspicious. Please refer your story to the Chiari Malformation Forum; your story SOUNDS just like some of their's. I think there is a Chiari specialist in Cincy that could look at the images from the hospital and assess your daughter for this condition.
Keep us posted;All the best.
This sounds like my daughter. She was just released from Cincinnati Children’s Hospital; they said she's a hard case. Please forgive my spelling before I begin. She received injections for the occipital nerve - Her pain is in the back right at the base of her skull only. They said that should make her headache go away instantly from the numbing the nerve, then 48 hours for the actual medicine to work. That didn't work at all. So the ran DHE for 3.5 days. She did tolerate that better than most they said after her 7th dose, the pain suddenly got worse so then they thought it wasn't helping. The nurse gave the 8th dose because the neurologist hadn't made rounds yes, they said one more and stop. Part of this I believe also is because the nurse saw (what we have been thinking is just dizzy spells) her have what she said looked to be an absence seizure. Lindz was up to use the restroom and suddenly got dizzy - grabbed me and didn't respond for a few seconds - that's what she's been doing for about 5 weeks - anyway the nurse immediately came to her and pinched her fingers and arms, turned around and Lindz answered "what?" She has no memory of that at all. So then they mentioned doing this 24 hr EEG. They want her to be on normal activities and where the monitor, made sense but she isn't seeing the doctor for a month. She is scheduled to see the pain management again on Friday but she is refusing to do any more injections. I don't understand waiting a month when she increasingly is getting worse. They sent her home one Lyrica 100 mg daily and Robaxin 500 mg tablets taking 2 at a time 4 times a day. Then told us to bring her back if her pain level reaches 8 or higher. When we left she was at a 5. By the way - every doctor, nurse, pain management and pain psychology all said she has developed a high pain tolerance due to learning to living with these headaches daily. They said her 5 pain level this last stay would be any other teens 8-10. She can't even tell us when the last day was that she hasn't had a headache since she was released from the hospital on March 21st. That was her first stay. It's seems the bad pain is coming closer together but she doesn't feel them coming on. She has been on Depakote, Amitriptyline, Compazine, Topamax and Fiorcet at home and Depakon and Toradol IV’s. I can't tell you all of the IV medications. It is fair to say the doctors that have seen her are stumped with her saying "she's a tough case" The attending’s did agree this time they don't believe it's migraines because nothing about her symptoms present as a migraine. She's had ct scan which did show underlying cerebellar tonsils, they don't believe they are significant and not some malformation thing. She's had a MRI, MRA and a 15-20 minute EEG. All which appear to be normal. I'm sure I'm forgetting something but that's what I have at the moment. Oh, one more thing, they said if it were the seizure thing, usually they don't cause headaches but Maryjane - your aunt if you remember her. Your grandma’s sister said her son had seizure where he just starred and he always got headaches after. Just another something to make me scratch my head. I'm most puzzled at waiting a month for follow-up and to get the 24 hr monitor EEG and after her waking up last night in so much pain, we could have already gone back but we have been just trying to help her work through it till she can get to sleep. Lying seems to help and when she gets up and moving around much, seems like it gets bad again but other times she can ignore the pain, go through a whole dance class and feel fine. Any ideas, questions we should ask her doctor would be much appreciated.
Hope your MRI of the brain/head was done WITH CONSTRAST; better imaging.
A number of things could show up on an MRI of your cervical spine; herniated disks, degenerative disease, pinched nerves, cervical spine straightening out, etc. Those were just some examples. That particular image will give a detailed picture of the lower part of the brain and the cervical spine/neck. You would be surprised the number of problems your cervical spine can cause. An X-ray really won't show alot in detail like an MRI. You can see vessels, bone, spinal cord, spinal column, etc.
Wow - thanks for all the comments! I have not had an MRI of the cervical spine, only an X-Ray. What could show up in a MRI scan of the neck that could be causing this?
No MRI of the cervical spine/neck?
I was just wondering if you've ever noticed any other symptoms that you don't think are connected to your head pain...Do you have frequent heartburn, bone or joint aches, frequent urination, gut disturbances (constipation, gut pains), or kidney stones? If you have, get your calcium and parathyroid levels checked (different from thyroid). Also low Vitamin B levels can cause similar issues. Good luck. It can be maddening when you know something isn't right, but you don't know what it could be...~MM
Hi Babes, Have you looked into Fibromyalgia? There are no blood test or MRI scans only Trigger points. Fibromyalgia can sometimes feel like nerve pain or a trapped nerve. Have you been to see a pain management Doctor?
I was getting bad headaches and pain in my neck, unfortunately alot of other places aswell, but i had stiffness in my neck muscles, shoulders and back, I was diagnosed with Fibromyalgia. Have you had a fall of any kind or a knock?
If you look under Fibromyalgia/CFS there could be some information similar to what your experiencing. Would you plz let me know how you get on.
Good Luck.
Jax(",)xXx