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How concerned should I be?
Hi everyone,
Over the last 3 months I have been having severe headaches in the base of my skull, visual problems (like looking through a kaleidoscope) as well as severe neck and left sided chest pain. There have been several headaches that were so severe I thought I might have some sort of cerebral hemorrhage going on. I am status post (7 yrs) TLIF lumbar fusion surgery and was diagnosed 5 yrs ago with cervical disk degeneration. I told my PCP about my headaches and neck pain and felt as if he initially shrugged it off, suggesting they were cluster headaches. He wanted me to go to physical therapy for my neck. I asked if that was the right treatment choice not actually knowing if my disks had progressively worsened. It was then that he ordered an MRI, Rx Medrol dose pack and Skelaxin three times per day. Today I picked up my MRI written report from the hospital and it indicated I have several issues going on including low-lying cerebellar tonsils extending up to 6mm below the basion-the fifth and line. It also showed a sagging appearance to the brain stem. I totally wasn't expecting any of this, I thought it would be progression of my disk issues (which was also addressed in this report as well as a 0.9cm thyroid nodule). So, as you can tell, I'm dumbfounded and need some guidance. I didn't see the diagnosis of Chiari Malformation mentioned but everything I read indicates that is what this is. The headaches are becoming debilitating at times and now having pressure in my ears (not pain) and it feels as if something is squeezing my neck. I have a follow up appt with my PCP on 2/17, should I move it up? Any advice would be greatly appreciated.
Over the last 3 months I have been having severe headaches in the base of my skull, visual problems (like looking through a kaleidoscope) as well as severe neck and left sided chest pain. There have been several headaches that were so severe I thought I might have some sort of cerebral hemorrhage going on. I am status post (7 yrs) TLIF lumbar fusion surgery and was diagnosed 5 yrs ago with cervical disk degeneration. I told my PCP about my headaches and neck pain and felt as if he initially shrugged it off, suggesting they were cluster headaches. He wanted me to go to physical therapy for my neck. I asked if that was the right treatment choice not actually knowing if my disks had progressively worsened. It was then that he ordered an MRI, Rx Medrol dose pack and Skelaxin three times per day. Today I picked up my MRI written report from the hospital and it indicated I have several issues going on including low-lying cerebellar tonsils extending up to 6mm below the basion-the fifth and line. It also showed a sagging appearance to the brain stem. I totally wasn't expecting any of this, I thought it would be progression of my disk issues (which was also addressed in this report as well as a 0.9cm thyroid nodule). So, as you can tell, I'm dumbfounded and need some guidance. I didn't see the diagnosis of Chiari Malformation mentioned but everything I read indicates that is what this is. The headaches are becoming debilitating at times and now having pressure in my ears (not pain) and it feels as if something is squeezing my neck. I have a follow up appt with my PCP on 2/17, should I move it up? Any advice would be greatly appreciated.
Hi Becky,
To help you with all the appointments you will have to go to, try to keep an accurate journal of symptoms and what may have proceeded them. Whenever I go to a doctor, it is always difficult to remember all the thing I want to report. In your post, you didn't mention having any issues with your memory, but I thought it would perhaps help you to write important things down. You have a lot going on. I wish you good luck. Keep posting about your progress.
To help you with all the appointments you will have to go to, try to keep an accurate journal of symptoms and what may have proceeded them. Whenever I go to a doctor, it is always difficult to remember all the thing I want to report. In your post, you didn't mention having any issues with your memory, but I thought it would perhaps help you to write important things down. You have a lot going on. I wish you good luck. Keep posting about your progress.
COMMUNITY LEADER
I hate to say this as it seems overwhelming but deal with all of it as they are interconnected....see a good endo that will give you meds if your levels are over 2.2.....with nodules....they should test your blood every 6 months as well as do a ultra sound of the thyroid...you do not want the nodules to grow so large you need your thyroid removed....
See a true Chiari specialist that will also look to the disks....so the brain and cervical spine are addressed by one Dr ...even tho they may send you to someone else in their group or outside...depending on what the disk issues are they may handle themselves...This Dr should also rule out Syringomyelila, tethered cord, ICP, POTS, Ehlers-Danlos....
It can take time to get into a Dr so start with the ENDO to look at thyroid, I found it very difficult to find one that treats Hashimoto's...too many dismiss it as a condition needing treatment.
Thank you so much for responding so quickly. I'm not a person that runs quickly to my doctor especially since I don't feel my PCP is competent with some conditions but I don't want to waste time either.
What you say seems to make perfect sense. In my 20's I experienced extreme fatigue and joint pain. I had a positive ANA with high titers and a few other positive tests so I was diagnosed by a Rheumatologist as having Mixed Collagen Vascular Disease. My thyroid was felt to be enlarged so the Rheumatologist sent me to an Endocrinologist thinking it was Hashimoto's. The Endo said no, he was "leaning" more towards SLE but felt it wouldn't surface for many yrs, even though specific labs for SLE were negative. I was tired of bouncing back and forth and not really getting answers, and given fistfuls of prescriptions, so I just didn't go back.
One major concern for me is CSF leak since I had to have 4 back surgeries within 9 months, last one resulting in the lumbar fusion. That was 7 yrs ago and other than some ocassional pain and spasms, I've done well and life was back to normal.
The headaches for me are unbearable and are occurring more frequently along with the prism-like visual disturbances and pressure in my neck and ears. That's when I realized it could be more than just the c-spine issues. So, I guess my question is, what should I address first, the Thyroid, the brain or the cervical disks? I want to research some specialists and will need to stay in network with my insurance.
Thank you again for your expertise and guidance..so glad I stumbled across this support group.
What you say seems to make perfect sense. In my 20's I experienced extreme fatigue and joint pain. I had a positive ANA with high titers and a few other positive tests so I was diagnosed by a Rheumatologist as having Mixed Collagen Vascular Disease. My thyroid was felt to be enlarged so the Rheumatologist sent me to an Endocrinologist thinking it was Hashimoto's. The Endo said no, he was "leaning" more towards SLE but felt it wouldn't surface for many yrs, even though specific labs for SLE were negative. I was tired of bouncing back and forth and not really getting answers, and given fistfuls of prescriptions, so I just didn't go back.
One major concern for me is CSF leak since I had to have 4 back surgeries within 9 months, last one resulting in the lumbar fusion. That was 7 yrs ago and other than some ocassional pain and spasms, I've done well and life was back to normal.
The headaches for me are unbearable and are occurring more frequently along with the prism-like visual disturbances and pressure in my neck and ears. That's when I realized it could be more than just the c-spine issues. So, I guess my question is, what should I address first, the Thyroid, the brain or the cervical disks? I want to research some specialists and will need to stay in network with my insurance.
Thank you again for your expertise and guidance..so glad I stumbled across this support group.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
Do not panic or rush into your Drs....unless you are having major issues like your breathing stops....take your time and have more testing and research Drs to get to a true Chiari specialist....Chiari may not have been mentioned as many Drs do not believe we can and do have symptoms as a result of Chiari...They tend to see it as an incidential finding....
Since you have had disk issues I would suggest you get Ehlers-Danlos ruled out....and with the thyroid nodule get checked for Hashimoto''s thyroiditis...manywith Chiari are prone to get connective tissue disorders and autoimmune disorders....and those are 2 of the conditions related to Chiari...there are others as well so, you will want ALL related conditions ruled out....
Know that just bcuz you have Chiari does not mean you will need surgery, not everyone is a surgical candidate...as surgery is done to restore CSF flow if your CSF flow is not obstructed surgery will not help...but could trigger other issuses...so again...take your time, research this condition and Drs and get the rigth one for you.
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