I saw Dr. Heffez on Wednesday of this week to confirm my diagnosis of Chiari 1. I have a 4mm herniation and he showed me the MRI view where everything was crowded and the arteries are pinched off. I have so many symptoms, and he felt many could overlap with EDS Hypermobility and POTS. He said surgery MAY help some of the symptoms such as: Constant pressure headache, nerve pain in arms, hands, legs and feet, weird sensations all over, trouble swallowing, dizziness, nausea, vomiting, lightheadedness, major fatigue. He said he will send me a letter with all of the details and if I decide to go ahead with surgery, then to call and schedule it.
I am the type of person who has had all things go wrong when they can, so I'm very nervous about surgery...especially if it will make me worse. I am desperate to improve my quality of life and I really do want to the surgery. My mind went blank and I didn't ask any good questions. I called the office yesterday and they assured me all my questions will be answered if I choose to have the surgery.
Now that I'm researching EDS and Chiari 1, I'm so nervous that the surgery could make things worse. I can't go down that rabbit hole. I know it's a risk you take to feel better but I will lose everything I worked so hard for to build this beautiful life of mine.
So I guess my question is, did anyone with Chiari and EDS Hypermobility get relief from the surgery. Would you do it again? Why or why not?
Thank you so much in advance for your responses. I'm driving myself internet crazy. I'm up and down, back and forth.
Ell, i agree with the others…getting a decompression without fusing for the Instability is a recipe for future suffering and more permanent symptoms. I had my decompression done without my hypermobility being fully addressed and having cranial cervical instability ruled out. 4 months after decompression surgery the pain was back and amplified. I need a second surgery to fuse my head to my neck. You have the good fortune to know that you have EDS and possible cranial cervical instability…my advice is to address it properly. Does Heffez do cranial cervical fusions for CCI? If he is not willing to get to the bottom of it rest assured there are other surgeons in the US who will. You will need flex extension cervical MRIs and rotational cervical CT scans to see the different types of instability. It sounds like you are well into your due diligence but just in case you haven’t seen this it’s a great video.
CSFinfo.org
Videos
Metropolitan Area
Cranio cervical instability and the complex Chiari patient
And EDS and Chiari
Heffez has helped a lot of people, and he addresses small herniations which a lot surgeons don’t do, but if he won’t do the fusion I think you should move on to a different surgeon.
Jenn
I would absolutely have the surgery again. I have not had a chiari headache and all my fairly severe symptoms have resolved since my surgery on 10/31/2012. I also had tethered cord surgery one month later and all of the related issues (including years of urinary problems) are also gone. I still have constant moderately painful low back pain (still feels like the tethered cord post op pain.)
I do have EDS and had cervical instability (the words "near pathological" were in the report re: my flexion & extension MRI). This was addressed in the surgery.
My incision on my head was a couple inches long at the base of my head, right below my hair line (no or very little shaving) and it was closed with paper stitches.
My surgeon was Dr. Fraser Henderson, in Maryland (where I am so lucky to live.) He also operated on my eldest daughter with good results.
I am facing the same decision. I have a 5mm chiari malformation, and craniocervical instability. And the same symptoms going on as well. I return to see my neurosurgeon in early June. I've heard that if an EDS patient gets just decompression (or decompression and duraplasty, they are opening themselves up to a chance of developing a chiari 1.5. That's is why when I was made aware of the possibility of having EDS (which I had never heard of before coming into support groups) I decided I'd better wait to see Dr. Henderson. And I'm glad I did, because I did have EDS and craniocervical instability. Dr. H put a collar on me, so that I can't look up or down. He said that when I look down or up, my brain stem is being damaged. And I think this is what is happening to everyone with this condition. So we don't really have a choice but to get it corrected or to suffer irreparable damage to the brain stem. Most days, I cope (emotionally) okay! Other days, I wish I could run away and not have surgery. But every day, my balance seems to get worse, my symptoms seem to get worse. I'm not who I was six months ago. I'm so much sicker. And I remember that on the days that I want to run away from all of this! Because in six months from now, I can be that much worse. Or I can have this surgery, and take my chances that in six months from now, I'll be recovering and maybe walking unassisted again. Maybe I won't be choking on everything I eat anymore and maybe my head pain will have gone away. Really hoping this dumb ringing in the ears goes away! :/ I'm scared, but then also anxious to get it over with, because I feel like it is the answer to relieving my symptoms. Lots of prayers and positive thoughts for you! I know what you're going through! It's a lot to take in! <3 Hugs! Kim
Wow, great feedback. I went to visit my folks this weekend and took a much needed internet breather. I’m so glad to hear from you all and I’m going to let it all settle in for a bit! I’m feeling better about the fusion and decompression. I’ll be anxiously waiting dr. heffez’s letter with his recommended course of action and I’ll address my concerns to him then. Hopefully he’s well aware and on top of the fusion factor. More waiting!
Thanks again everyone…I’ll write more tomorrow.
Ok, now that I've had some time to let everything settle I've got more questions:)
Has anyone here had the decompression and fusion in one surgery? Either by Dr. Heffez or another NS?
I'm interested to see what is in his letter he told me he would write. He said he will include his recommendations. At least now I know to make sure they do the fusion and decompression all in one shot. I am going to be using every once of sick time, vacation time and comp time for the surgery and will still have time that is unpaid while I recover. Hopefully it will be worth it. But I wont be able to afford to do two separate surgeries. I'm completely willing to do both at once if it's possible.
Dr. Heffez spent a lot of time talking about my EDS and how the surgery wouldn't relieve all of my symptoms. I'm not looking for relief from all of my EDS symptoms, but hopefully many of the Chiari symptoms. I am so drained all of the time. My 97 year old grandma just told me I look terrible since Thanksgiving and that I need to do whatever I can to get my life back. In the past 6 months I have gotten so much sicker. The nausea is so debilitating. The headaches are kind the norm and always have been, but the nausea, o god the nausea! The burning pain in my extremities is also so debilitating. KMB- I know what you mean by weighing the options. Do I wait until I get sicker, or spend my time trying to recover?
There hasn't been any mention of trying a collar. I did get one when my nausea started last fall, but it makes me nauseated so I can't wear it...go figure. I have the Aspen with the opening in the front, but it still feels like too much pressure on my throat and makes me want to vomit. I'll just wait to see what the letter says I guess.
If dr. Heffez is unwilling to do both surgeries, perhaps I should consider traveling to see Dr. Henderson...but I have a lot of family in Milwaukee and it's only a 3.5 hour drive from home for me. He knows I am extremely hypermobile but didn't say anything about a fusion. My rheumatologist who refused to check me for Chiari diagnosed me with CCI.
I've never had flexion and extension or rotational MRI's. Isn't this something Dr. Heffez should have done while I was there?
Ell, I’m not sure how else a surgeon would be able to see the different types of CCI if not for the flex ext MRIs and rotational CTs. I would think that Heffez would want to see the full picture before making a surgery plan- but I just don’t know how he handles it. He did my decompression a little over a year ago, and now I’m seeing Henderson for the CCI and possible decompression revision. I would have preferred to have Heffez address my CCI, but I found out I had it after the fact and he was not willing to address at that point. If he doesn’t want to address your CCI I think Henderson is the way to go, not from my own experience as I have yet to my fusion, but from others’ experience.
Jenn
Thanks Jen,
I can't wait to see what his letter says. Hopefully he will address is right away and it won't be yet another thing I need to fight to be addressed. Do you have EDS? If you do, did you know about it then? (Did he know you had EDS and not look into the CCI?)
I really want to get this right on the first go. (Who doesn't...)
I have known about my EDS H for about 6 years now, and had gone to so many doctors who didn't think anything was wrong with me. I was just to a geneticist about 3 months ago who said he's never seen someone fit all of the criteria before or score as high as I did- a 9/9 on the beighton. When my neurological symptoms began to take over, my rheumatologist didn't take me seriously and diagnosed me with CCI. (Without scans) I had to pursue my own scans and send them to the Wisconsin Chiari Institute and they called me right away with my Chiari Diagnosis. It is such a relief to know I'm not crazy! I'd love to call my ex-husband and tell him there really was something wrong with me and that he sucks...but there's no point in that. I have a very supportive partner now who calls these "our diseases" and I actually feel like a have him 100% by my side. So many years of people thinking I was crazy I started to believe it myself. It really was in my head- really! My Brain! My head feels so heavy all of the time. I have a hard time holding it up some days.
http://csfinfo.org/videos/physician-lecture-videos/greater-metropolitan-washington-area-chapter-lectures/
Under videos and then under Greater Metropolitan Washington Chapter Lectures, has some interesting videos with Dr. Henderson. Someone else on this group shared with me. Also on youtube. I believe, usually the do the decompression, fusion and duraplasty. But I'm only going by what I've heard a couple of others who have gone through this have said. We are in a similar situation. My husband will need to take time off to help me, and we're unsure of how much time, and not sure what is what yet. I am hoping and praying that all goes well and that I only require additional surgeries. For my sake and due to the fact that we just don't have the time (for him to take additional time off of work). I've heard medicare does cover home health aids. Maybe a possibility if I need it. I am curious as to what others who have been through this procedure have experienced. Now is the time to start making plans for family to maybe help out with some things after surgery, stock up on things at the house, etc. Would be a lot easier, if the energy was there and the balance! Something I notice about this collar (this is also an aspen), I wake up gasping because it slips back and the chin part cuts off my airway. For weeks, it's been happening, and I thought I was starting to have sleep apnea or something. Then I realized night before last what was happening. So I can see how it would gag you. Ugh! I hope he addresses the whole thing at once. It is so important. Hugs!
Beeba, His Mom works for the same company I do, but in a different area. She will catch wind and so will he. The past just isn't worth my worry anymore. I have to focus on the now and the future and myself! :) I still haven't gotten the letter from Dr. Heffez with his surgical recommendations. I am so sick of the waiting game...always waiting for something in this process. I hope it comes today. I hope he has considered the EDS in his recommendations and addresses the fusion. If not I will definitely be looking into traveling to find a knowledgeable surgeon for EDS and Chiari.
Does anyone with EDS have any experience with Dr. Heffez?
I'm ready to get this over with!
girl, you sound like me!!! Symptoms and all.. I have a few others you haven't listed (fainting spells, black outs, insomnia, but I sleep a lot some days and nights.. some nights I stay up all night then all day the next day..
I have POTS, and cervical instability (something having to do with my odontoid process anomaly) My surgery date is June 2nd (6:30 a.m.) check back with me after that and ill let you know if i'd do it again :) I have a 10mm herniation, obstruction of CSF as well.. prayers that you feel better soon!
I somehow missed this one! Thanks for the reply kmb. It's so silly that we have to worry so much about money at a time like this. Most health situations just "happen" and then you deal with it...but to PLAN brain surgery!? It's very stressful. I found myself asking my boss, "so when would be a good time for you, for me to have brain surgery?" I just never get used to hearing myself say that. There are so many details to work out beforehand, and like you said, with no energy it's near impossible. But...it will all work out and everything will be fine in the end! Just keep telling yourself that! I can't imagine having children and planning this...I feel for you. Hang in there kmb!
kmb8136 said:
http://csfinfo.org/videos/physician-lecture-videos/greater-metropol...
Under videos and then under Greater Metropolitan Washington Chapter Lectures, has some interesting videos with Dr. Henderson. Someone else on this group shared with me. Also on youtube. I believe, usually the do the decompression, fusion and duraplasty. But I'm only going by what I've heard a couple of others who have gone through this have said. We are in a similar situation. My husband will need to take time off to help me, and we're unsure of how much time, and not sure what is what yet. I am hoping and praying that all goes well and that I only require additional surgeries. For my sake and due to the fact that we just don't have the time (for him to take additional time off of work). I've heard medicare does cover home health aids. Maybe a possibility if I need it. I am curious as to what others who have been through this procedure have experienced. Now is the time to start making plans for family to maybe help out with some things after surgery, stock up on things at the house, etc. Would be a lot easier, if the energy was there and the balance! Something I notice about this collar (this is also an aspen), I wake up gasping because it slips back and the chin part cuts off my airway. For weeks, it's been happening, and I thought I was starting to have sleep apnea or something. Then I realized night before last what was happening. So I can see how it would gag you. Ugh! I hope he addresses the whole thing at once. It is so important. Hugs!
Hi Shelly,
What surgery are you having?? Where are you having it done?
shellybelly0930 said:
girl, you sound like me!!! Symptoms and all.. I have a few others you haven't listed (fainting spells, black outs, insomnia, but I sleep a lot some days and nights.. some nights I stay up all night then all day the next day..
I have POTS, and cervical instability (something having to do with my odontoid process anomaly) My surgery date is June 2nd (6:30 a.m.) check back with me after that and ill let you know if i'd do it again :) I have a 10mm herniation, obstruction of CSF as well.. prayers that you feel better soon!
So I got the final report from Dr. Heffez the other day. He did not address my CCI. He did not suggest a fusion. Now what?
I sent him a letter with my concerns in regards to surgery and EDS. Hopefully he will respond soon and I can schedule surgery and start planning. I don't know if I should schedule the decompression and wait to hear what he says about the fusion, or wait until I know for sure what the plan is. It feels odd fighting for the fusion.
Ell, there are really no standards of practice that all surgeons follow in surgically treating Chiari. They all have their preferences and perform the surgery their own way. I know you’re anxious to get the ball rolling and have already invested in this NS, and of course we will support you with what ever decision feels right to you. Keep in mind that you are the one who lives the surgical outcome, not the NS. You deserve to have the best surgeon on your case.
Jenn