Maybe I am going about this the wrong way. I am about 9 months post op. and right now there is nothing more my surgeon can do for me. So, I have been looking for a Neurologist. Have seen about a half dozen and none have been helpful. They all want to diagnose me with migraine. They all tell me that the Chiari is not the problem especially since I have had surgery. Well, I still get many very painful headaches and have vomiting spells about once a week. I have tried many migraine meds and they only work about 25% of the time. They have also suggested various herbs and supplements with no results. I have pretty much had it with the Neurologists and the whole migraine thing. So, my question is now what? What comes next? Do I see a pain management specialist? I have also considered sending my records to The Chiari Center in Wisconsin to see if there is anything else they can do. Like I said in the beginning I have been decompressed but I just cant take these headaches and the vomiting. My surgeon does not believe there is anymore he can do for me surgically. Any suggestions as to what to do next?
Good question as I am in the same position as you. Only my NS is in denial about me still having issues regardless of the countless infection on my incision from 9 months ago. I have been to a few NL that all tell me the samething that I have migraines. I have been on 18 different migraines meds in 4 years and nothing works, and every NL gives me the lecture on taking hydrocodone for pain but yet have no options for me. I am staying with my current NL only to try Botox and hope it helps. I have mentioned EDS but none listen and think Chiari is nothing. My PCP fills my scripts but she doesn't know what to tell me any more either. I will be getting another CINE MRI and then seeing another NS but he doesn't specialize in Chiari either... but after my experience with a "top" chiari "specialist" and being well recommended by others, I don't care what their specialty is any more, I just want help and answers. I don't want to keep doctor hopping but i don't want to live this way forever either. I honestly wish I never had surgery... I am worse now then I was before and now out of PTO and FMLA and miss way too much work.
In others words, I wish I had a suggestion for you. I have been in this boat since I had the last bad experience with ms NS in August who dismissed me saying I should be cured now and i just need to lose weight, however the CINE flow study before that appointment was "inconclusive" so he couldn't even say my CSF was not blocked any longer. He also denied my infections even though my doctor sent him the lab results and pictures. I have gotten my medical records from there since then and saw all the stuff from my PCP that she sent, but it was just brushed off.
I am sorry you are dealing with all this too.. I hope some day we all get some answers and help. I am looking into a pain management clinic too, but waiting to see my PCP again Thursday and then plan to make an appointment.
Mercedes, I can relate, and I’m so sorry. I think it is wise to consult with another NS. Before you do, however, please consider why your decompression might have failed. Do you know if your CSF has been restored? did you get the duraplasty? Do you have a plate on the back of your skull? Besides the “mechanical” type failures have you considered cranio cervical instability? There are A LOT of chiarians who have Elhers Danlos Syndrome- it causes the ligaments, which are supposed to hold joints together, to become lax and less effective. When your cranio cervical joints move it’s bad news! It has symptoms that mimic Chiari- it’s brainstem compression all over again. Please research EDS, cervical instability, and cranial cervical instability. The link is alarming to me, and further alarming is that NSs, even Chiari specialists, don’t necessarily screen for it or correct it. I believe that CCI has caused my decompression “failure,” and I’m waiting to see an NS who specializes in Chiari and CCI, but in the interim I wear a soft cervical collar which cuts down on the headache significantly. Also, how’s your heart rate and blood pressure?
Jenn
Thank you for the info. Im in the progress of getting surgical records. My csf had been restored as of my last Mri and I did have duraplasy. No plate on back of skull.I have not been tested for any related conditions. This is why I was looking for a neurologist who could do this. But so far, everyone I have seen is focused on Migraines. They wont consider anything else. It is just frustrating. That is why I was considering the Chiari Center in Wisconsin. But I have to find out if Insurance will even cover it. As far as loose ligaments go I am the opposite. Everything is overly tight. My neck and shoulders are always tight and feel as they need to be streched or my neck needs to be cracked. I know not to crack my neck and I do gentle streching but nothing helps. As far as my blood pressure is concerned it seems to been all over the place. Not sure what that means. Again you have given me some things to think about. Thank you.
jcdemar said:
Mercedes, I can relate, and I'm so sorry. I think it is wise to consult with another NS. Before you do, however, please consider why your decompression might have failed. Do you know if your CSF has been restored? did you get the duraplasty? Do you have a plate on the back of your skull? Besides the "mechanical" type failures have you considered cranio cervical instability? There are A LOT of chiarians who have Elhers Danlos Syndrome- it causes the ligaments, which are supposed to hold joints together, to become lax and less effective. When your cranio cervical joints move it's bad news! It has symptoms that mimic Chiari- it's brainstem compression all over again. Please research EDS, cervical instability, and cranial cervical instability. The link is alarming to me, and further alarming is that NSs, even Chiari specialists, don't necessarily screen for it or correct it. I believe that CCI has caused my decompression "failure," and I'm waiting to see an NS who specializes in Chiari and CCI, but in the interim I wear a soft cervical collar which cuts down on the headache significantly. Also, how's your heart rate and blood pressure?
Jenn
Mercedes, dysautonomia is also common with Chiari. Mine didn’t start till after the decompression. I take a beta blocker now for the high heart rate. The fluctuating blood pressure and high heart rate can cause horrible symptoms- headache, nausea and vomiting, and general illness. I’m sorry you are feeling so bad, I hope you get the help you need 
Jenn
I am on beta blockers as well. They seem to help the heart rate issue. Inderal is supposed to be a headache preventer as well, but I think it just reduces the severity for me. Definitely does not prevent them.
I was talking to someone else who is still having severe headaches. She has a main management specialist that she works with. Right now she is taking pain meds and is considering botox. If you are looking for a second opinion, I have a great neurosurgeon in Los Angeles - Dr Wesley King. He specializes in chiari's and is very knowledgeable about them.
I had the same problem after surgery, the haeadaches and neck pain got so bad I couldn't even do anything. Everyone kept telling me I was cured and should not have any problems because I had the surgery. I was finally send to see a pain managment Dr he did what is called cervical medial branch or rhiztom (which is burning my nerves). it has worked great no headaches or neck pain. I will have to do it again when the nerves start to heal but I had it done about 6 months ago. I am doing things I haven't done in years.
Rhonda that is great! And may be an option for some us. I don’t hear about this very much.
Rhonda56 said:
I had the same problem after surgery, the haeadaches and neck pain got so bad I couldn’t even do anything. Everyone kept telling me I was cured and should not have any problems because I had the surgery. I was finally send to see a pain managment Dr he did what is called cervical medial branch or rhiztom (which is burning my nerves). it has worked great no headaches or neck pain. I will have to do it again when the nerves start to heal but I had it done about 6 months ago. I am doing things I haven’t done in years.
I had surgery back in June of this year and still have headaches and a lot of pressure at the back of my neck and skull. Had an MRI and CINE scan recently for post op changes. My CSF flow is still decreased and it said tonsils less low lying, I only had decompression no dura plastu. My neurosurgeon says it was successful. I still have nystagmus, tinnitus, pain in legs, arms, neck and dizzy spells. Started falling and broke 3 toes. Had to take a personal leave without pay because I don’t qualify for intermittent FMLA. NL put me on pamelor and ultram for headaches. Don’t work at all. The pamelor makes me want to eat junk food all the time. NS talked about neurostimulator. Have called about decision and not getting return calls. So I will stop rambling. Just saying I understand your frustration.
Melanie, I’m sorry that you are still suffering, I’m sorry the CSF is till diminished. Are you thinking about seeing a different NS for another opinion? Your NS saying his surgery was a success with MRI evidence to the contrary is not right.
Jenn
Melanie said:
I had surgery back in June of this year and still have headaches and a lot of pressure at the back of my neck and skull. Had an MRI and CINE scan recently for post op changes. My CSF flow is still decreased and it said tonsils less low lying, I only had decompression no dura plastu. My neurosurgeon says it was successful. I still have nystagmus, tinnitus, pain in legs, arms, neck and dizzy spells. Started falling and broke 3 toes. Had to take a personal leave without pay because I don’t qualify for intermittent FMLA. NL put me on pamelor and ultram for headaches. Don’t work at all. The pamelor makes me want to eat junk food all the time. NS talked about neurostimulator. Have called about decision and not getting return calls. So I will stop rambling. Just saying I understand your frustration.
I had my decompression at the end of July this year, and have had pretty much the same experience. My NS says I'm "cured", and yet I have most of the problems I had before surgery, plus some new ones. The NL all say migraine, but I know its not. I can't get anyone to test for any of the problems that commonly go along with Chiari either.
I wish I had some suggestions or advice for you, but all I can do is wish you luck, and tell you I truly understand what you're going through...
Hi Mercedes,
I'm sorry that you are having to go through so much pain. I know we all hope that surgery is going to fix our problems so that we can have some relief. Unfortunately we know from people on this site that it doesn't always seem to work that way. I just wanted to say one thing because I don't really have any answers for you but if I'm correct maybe Jenn or someone else can back me on this. I believe that you don't need to go to a new neurologist, you need to find a new Neurosurgeon.
From my past experience and also all that I have read, I think that you will have better luck with a new NS. I know my NL said that he would only treat me for headaches and gave me a prescription for Topamax and sent me on my way. He was the doctor that diagnosed me BUT he never even did an exam on me. He never even touched me. Just told me to take the meds and come see him in a year. I wasn't ok with that and I have been advocating for myself since then. I am 22 days post-op and I am having good results. I am pleased so far and hopes it stays that way. I did have to go to the doctor today because I am retaining so much flood. I just cant get rid of it. I guess in due time.
I hope you get some relief sometime soon. I will pray for your recovery.
Shannon