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My chiari is getting so bad i'm worried i will only go downhill from here
I have had PFD surgery in febuary 2009 for a severe case of chiari. My symptoms started when i was 17 and have been constantly progressing, even since PFD surgery. I got my diagnosis in may 2008 and I'm now 24. I also have basilar impression,mild thoracic scoliosis as well as other related disorders. My surgeon suspects tethered cord occult variant and functional cranial settling which i have to undergo more tests to confirm. It is taking a long time because of problems with insurance but i am in so much pain i can barley funtion let alone work. The pain has completely consumed my life to the point i can only leave the house for Dr.'s appointments and even that is very difficult. My symtpoms don't match those of tethered cord. My main concern in finding out what is going on. I have many symptoms but my worst is constant pain in my thoracic spine and neck with pressure in the back of my head and eyes. It feels like my thoracic/cervical spine is stuck in a Chinese Finger Trap restricting my movement, but with sharp teeth biting into me so it is extremely painful. Being upright feels like the trap is being pulled on and it keeps getting tighter, the pain is excruciating. About every week or so, the pain in my thoracic spine gets much worse. It feels like i have been injured in that area, like i have fallen onto that part of my back or been hit by something. Over the next few days it gets worse then starts to ease up, and then the cycle starts over again. If you have any idea of what it could be or can help me in anyway please respond. Thank you.
Thank you so much selma.. i wish i had found this forum sooner. You have been so welcoming and comforting.
Good luck to you as well :)
Good luck to you as well :)
COMMUNITY LEADER
I know exactly what u mean.....when the time is right u will find another dr.
Good luck
"selma"
Good luck
"selma"
I also tried a few months ago to get a new PCP and they were not accpeting new patiets. Then we decided for now it may actually be easier to deal with my PCP and fight for her to do the referrals...rather than risking another herdle by switching.
COMMUNITY LEADER
...I did do the heal walking ect.....in office, so I guess the only one I didn't have is the MRI while lying on my tummy.
I also wanted a new PCP.....and felt I should wait until after surgery, but there si always another reason even tho he is ineffective.
Plus, most Drs in my area that participate with my insurance r not taking on new patients....I tried 2 yrs ago and I ran into the same thing....
I also wanted a new PCP.....and felt I should wait until after surgery, but there si always another reason even tho he is ineffective.
Plus, most Drs in my area that participate with my insurance r not taking on new patients....I tried 2 yrs ago and I ran into the same thing....
Thank you..i hope so too. The biggest problem is usually the disease but for me its my PCP making it as difficult as possible for me to get treatment.
Alot of people have recently told me to get a new PCP...I was going to do that but b/c i am in the middle of treatment(surgeries) my mom worried that it may just cause more problems switching in the midst of everything.
There are 9 tests but other than urodynamics and MRI's they are just in office neurological tests...you don't have to worry about having to do anything else like the urodynamics. He will have you walk on your heels back and forth.. as well as bend over and touch your toes to see if your bladder feels fuller. You may have to get another MRI while laying on your stomach b/c that is a new one...if you test positive for atleast 5 than you fit the criteria for the TC surgery.
Alot of people have recently told me to get a new PCP...I was going to do that but b/c i am in the middle of treatment(surgeries) my mom worried that it may just cause more problems switching in the midst of everything.
There are 9 tests but other than urodynamics and MRI's they are just in office neurological tests...you don't have to worry about having to do anything else like the urodynamics. He will have you walk on your heels back and forth.. as well as bend over and touch your toes to see if your bladder feels fuller. You may have to get another MRI while laying on your stomach b/c that is a new one...if you test positive for atleast 5 than you fit the criteria for the TC surgery.
COMMUNITY LEADER
I pray u can get all ur ducks in a row...insurance wise so this doesn't drag on too long.
Can u look for a diff PCP within ur insurance that may be a bit more open minded?
My initial consult was TC also, but I do feel so much better having the decompression.....but I still have issues that I may always have......I am interested to see how my 6 month post op goes as well.....I am getting as nervous for it as I was for my initial visit.
How many tests do u have to get now for TC?
I had the urodynamics, and MRI's......what else do the do?
"selma"
Can u look for a diff PCP within ur insurance that may be a bit more open minded?
My initial consult was TC also, but I do feel so much better having the decompression.....but I still have issues that I may always have......I am interested to see how my 6 month post op goes as well.....I am getting as nervous for it as I was for my initial visit.
How many tests do u have to get now for TC?
I had the urodynamics, and MRI's......what else do the do?
"selma"
Dr.B has said from my initial consult that i have tethered cord based on my symptoms, the tests that he does when he sees you (walking on your heels, bending over to touch your toes etc.) and he said that my stats were shocking. After my PFD surgery Dr. M said that i had no CSF flow what so ever as the space was completely crowded and i need the tethered cord surgery a.s.a.p. b/c my spine is still pulling my brainstem and 4th ventricle down to C2.
B/c of the controversy it has been put off. Dr. B has said to me he knows what he sees and that i do have tethered cord but they must do further tests that are now required for the criteria before they are allowed to perform this surgery. Do you have alot of back pain? I hope it will be easier for you when you have your 6 month post-op b/c there won't be anyomre controversy issues.
What is hard for me is that i am in alot of pain...my thoracic spine, upper back ,neck, head and eyes....and Dr.M said if i don't get this surgery soon i will have to get the decompression again as my spine is just going to pull everything back down.
I am quite worried... b/c of the insurance i have, the tests are the hardest thing for me to get as i must get a referral from my PCP for each one and she puts me through the ringer every time i need a referral. She doesn't understand chiari and now she has heard all the controversy, she treats me like its a big joke...she doesn't realize this is my life and more damage may be done to my body the more she puts me off.
B/c of the controversy it has been put off. Dr. B has said to me he knows what he sees and that i do have tethered cord but they must do further tests that are now required for the criteria before they are allowed to perform this surgery. Do you have alot of back pain? I hope it will be easier for you when you have your 6 month post-op b/c there won't be anyomre controversy issues.
What is hard for me is that i am in alot of pain...my thoracic spine, upper back ,neck, head and eyes....and Dr.M said if i don't get this surgery soon i will have to get the decompression again as my spine is just going to pull everything back down.
I am quite worried... b/c of the insurance i have, the tests are the hardest thing for me to get as i must get a referral from my PCP for each one and she puts me through the ringer every time i need a referral. She doesn't understand chiari and now she has heard all the controversy, she treats me like its a big joke...she doesn't realize this is my life and more damage may be done to my body the more she puts me off.
COMMUNITY LEADER
Hi Nichole.....u r still recovering and I wonder if u have tethered cord....I was dx with it as well and admist the contoversy at TCI after Dr B and Dr M were reinstated and reviewed my charts I was changed to the decompression surgery.
I was also told that when I had my 6 month post op visit and MRI's they would look to see if the TC was affecting me.
Do u know if u have TC?
"selma"
I was also told that when I had my 6 month post op visit and MRI's they would look to see if the TC was affecting me.
Do u know if u have TC?
"selma"
Hi selma, thank you for your response.
I go to the chiari institute in NY. Dr. Bolognese and Dr. milorhat did my surgery, as of now which i'm sure you have heard Dr. Milorhat had to retire but my neurosurgeon is still Dr. B. TCI actually came through for me when i had no where else to turn. Due to having HIP medicaid, it is very difficult to choose a doctor to better myself. I just have go where i am told. My PCP sent me to a neurosurgeon and a neurologist that did not understand chiari and they basically told me where to stick it. Its so hard to believe that doctors can turn away somone who is in so much pain they cannot live their life.
Dr. milohat told me that they did cut into the dura and used a patch of my own membrane.
After my surgery, my pain level was through the roof. I didn't feel any pain at the incision site at all but the the pain in my back and neck was excruciating. I could not sleep at all. I still have alot of pain everyday but the pain was the worst until about 3-4 months post-op. I also get a sharp pressure like pain in my eyes and head. I can't sit up right or stand for more than a few minutes without being in an extreme amount of pain.
I was checked for a syrinx before my PFD and i did not have one but i am still waiting to see Dr. B since my latest MRI's. At my initial consult Dr.B said that my only option for any relief was the surgery because my neck was completly crowded and had no CSF flow as it was trapped in my head. The pain was so terrible before the surgery i had to force my self to work and do nothing else but since the surgery it has only gotten worse. I'm sorry if i'm rambling, i'm just so confused as to why i'm still in so much pain and what i should do.
I go to the chiari institute in NY. Dr. Bolognese and Dr. milorhat did my surgery, as of now which i'm sure you have heard Dr. Milorhat had to retire but my neurosurgeon is still Dr. B. TCI actually came through for me when i had no where else to turn. Due to having HIP medicaid, it is very difficult to choose a doctor to better myself. I just have go where i am told. My PCP sent me to a neurosurgeon and a neurologist that did not understand chiari and they basically told me where to stick it. Its so hard to believe that doctors can turn away somone who is in so much pain they cannot live their life.
Dr. milohat told me that they did cut into the dura and used a patch of my own membrane.
After my surgery, my pain level was through the roof. I didn't feel any pain at the incision site at all but the the pain in my back and neck was excruciating. I could not sleep at all. I still have alot of pain everyday but the pain was the worst until about 3-4 months post-op. I also get a sharp pressure like pain in my eyes and head. I can't sit up right or stand for more than a few minutes without being in an extreme amount of pain.
I was checked for a syrinx before my PFD and i did not have one but i am still waiting to see Dr. B since my latest MRI's. At my initial consult Dr.B said that my only option for any relief was the surgery because my neck was completly crowded and had no CSF flow as it was trapped in my head. The pain was so terrible before the surgery i had to force my self to work and do nothing else but since the surgery it has only gotten worse. I'm sorry if i'm rambling, i'm just so confused as to why i'm still in so much pain and what i should do.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
There r different types of decompression surgery, depending on who ur dr is/was.
Some do not cut into the dura.....some do, some use endoscopy.....and with the patches some use bovine, cadaver or titanium....there r synthedics and natural skin from the patient.
May we ask what type urs was?
From what I understand tethered cord symptoms would get worse in the first 3 months post op.....and cranial settleing can be related to Ehlers-Danlos syndrome.
I am not sure if u r going back to ur original NS or if u have considered getting a second opinion.....
Have u been checked for a syrinx?
"selma"
There r different types of decompression surgery, depending on who ur dr is/was.
Some do not cut into the dura.....some do, some use endoscopy.....and with the patches some use bovine, cadaver or titanium....there r synthedics and natural skin from the patient.
May we ask what type urs was?
From what I understand tethered cord symptoms would get worse in the first 3 months post op.....and cranial settleing can be related to Ehlers-Danlos syndrome.
I am not sure if u r going back to ur original NS or if u have considered getting a second opinion.....
Have u been checked for a syrinx?
"selma"
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