Has anyone had this done? or can anyone direct me to more information about patient outcomes or patient blogs (besides this one poor girl with a billion other problems). I wasn't freaked out about it until recently because I know that it's pretty obvious that I need to have it done, but there seems to be at least a couple different ways that Neurosurgeons are doing this procedure. For example, I searched this forum for "fusion" and there was a post from 2009 about how this woman was going to get her decompression done at TCI and her fusion done with Dr. Henderson( i think) and that was the last post that person ever made. I mean it seems like, for the most part, the only people on the internet talking about our conditions are the ones who are currently suffering. Don't get me wrong, I love this and other forums sooo much and love everyone that's a part of them for being so open, honest, and full of love and compassion... but where are the people who have gone through it? Where are the patients who have actually had cranio-cervical fusion???
Nothing to offer but commiseration. I really wish some of the people would post follow-ups so that we could figure out how they're doing. I haven't come across any other blog, other than the one I think you're talking about, but if I find something I'll let you know.
Hi..my question is does this mean you need to have your c1 fused to your skull? When I had my decompression my c1 was fused to skull from birth and so they unfused it. I had c5 and c6 fused a couple months ago and that went great...are you having fusion with decompression? Please let me know how I can help and questions to answer.
My C1 actually has an unfused posterior arch. From what I understand, Dr. B wants to fuse at least a couple of top vertebrae to my skull and I would lose 50% mobility. I was told it's about a 7 1/2 hour procedure! I understand that that's a totally reasonable amount of time for a decompression and fusion but it just feels like a really long time when compared to only getting the decompression done. Who did your fusion Cash?
Dr oro did it and it was such a great experience compared to decompression that was done by a non chiari specialist. I have only one level fused and to be honesty I don't even notice a decrease in rom. Good luck how soon are you doing this?
oh I found a post that describes it pretty well... http://www.****.org/forum/topics/fusion?xg_source=activity (Marisa - 3rd reply) she seems to be very happy with her outcome.
I'm scheduled for early June but that depends on the support of my family... They don't support it yet but I think it's simply because they don't understand why it's necessary and they are just as scared as I am. My wonderful psychiatrist is going to speak with Dr. Bolognese soon and I expect a lot of understanding to come from that :) I mean, if I can't find enough evidence that this is a worthwhile procedure, my only other thought is to get an aspen collar or whatever and wait while the research continues. After watching the recent CSF Gala video (http://vimeo.com/38516977) it seems like there is about to be a serious boom in Chiari treatment development... or is it just the expansion of Chiari Centers with the current treatments? I can't tell (so if anybody can clarify this, please do) but there's certainly a lot of funding going on. I welcome all thoughts and opinions on all of this!
Hi,,,I have a prayer thread up for today for a friend of mine Laurie that is having the fusion today ...she had TC release at TCI 3 yrs ago and Dr B told her she also need the fusion and put it off, the MVA she was in a month ago has made the issue progress to the point she was told this past Thurs she had to have this surgery asap, and was scheduled for today.
I am scheduled to have PFD and fusion to c3 in June at TCI. Honestly, the fusion part scares me the most, so I contacted Dr. B via email to ask if he could share his rationale with me. He is so amazing -- he responded in approx. 15 minutes with an answer that made total sense. Per Dr. B, my retroflexed odontoid process and connective tissue disorder makes post PFD cranio cervical instability VERY likely, therefore, fusion done right away will prevent the instability and the necessity of going back in later. Still scared, though!!!
I'm right there with ya actressmouse <3 thanks for your reply.
I'm scared but I feel like it would help people like us if we could see the results of these surgeries. They do them on a regular basis right? How are these folks doing? Where are they?
I mean I am totally confident in Dr. B and I completely understand why this is all necessary, but for a place that does thousands of these surgeries... they only have 3 testimonials on their website? And I haven't found anybody anywhere else online (blogs, youtube, etc) coming out and saying how successful their surgery was. This frightens me the most.
Right now I'm thinking that there's so much money going into research and what not, that it might actually be a better idea to wait this out as long as I possibly can.
You summarize this very well. I am torn apart by my "waiver-ing" about surgery. One moment, I'm for it; the next, against. I keep thinking...I should be able to handle this pain...I'm not as bad off as everyone else...etc., etc. I haven't cancelled anything....yet. Right now, I'm stepping down off of Neurontin as per Dr. F's recommendation (it doesn't seem to be doing anything anyway) and awaiting her script in the mail for Tramadol. Maybe that will be my "band-aide". I just don't feel the the same "old me"....and I miss that the most.
I just wanted to jump in here. TCI has testimonials on their website of former patients who've had both the decompression & fusion:
I need a decompression/fusion, too, and I'm scared, but I'm also grateful that we live in a time and place where such treatment is available to us. 100 years ago, cervical instability was considered inoperable and terminal. How many people are given such a diagnosis every day that's hopeless? Nobody wants one operation, let alone two, but these surgeries could give us our lives back. Just my two cents.
besides the Neurontin issues, I am right there with ya. Or at least I was until this week... It has just been so painful, and my sensitivity to every little thing is out of control. I don't go anywhere but to the grocery store. Hanging out with friends is too difficult and painful. So most of the time I'm just here in my room alone. To top that off 99% of my time is spent alone because most people and family members think this is bull. I intend to keep my surgery date for now and I'm looking forward to it :) (June 11th -ish)
I am friends with laurie and she had her surgery in April 2012 and I had it done in May 2012, both were performed by Dr. Henderson. He is a wonderful human being. I felt completely at ease with him. I am 12 weeks today post op. I had the cranial-cervical fusion to my c3, c2 nerve root cut out. I had to have the surgery immediately after he got the new MRI results. He could not believe once he got in and operating that my brain stem was severely compressed and he didnt know how I was still up and moving. He actually came out and told my husband that bit of info and that if I had waited much longer that I would have died. He used 2 of my ribs and fused me to c3. Just be careful on how long you wait to see him. It is hard for us to tell what damage is being done with these illnesses. I am exactly 12 weeks out and still having alot of pain from the surgery. I have some good days here and there, but for the most part every day I deal with it and just am thankful to be here with my husband and girls.
Hey guys, I just read through this thread and was wondering how all of you who have had the fusion / decompression surgery are feeling? I myself may need to have something similar done and am just trying to find out if it's the best thing for me. Thanks in advance!
I have had the decompression, but not the fusion, yet....I know those that have had both and are doing well.....both times I considered going back for the fusion I had issues with my INS...and that is where I am now....my INS is dropping me, so I am going to hold off longer until I know I can afford to move forward....
May I ask when u were DX'd?...and who ur NS is?
Having the right Dr is key....and I know if I had not found my NS for the decompression I might not be doing as well as I am....
I am sure those that had these 2 procedures will reply, if not create a new thread so it gets more attention : )
I have had the decompression and the fusion both done. You can look at my journal. The part of my problem about walking was not due to anything on surgery part is was due to my syrnix being as big as it was. I have a hernated disc so I had three surgeries in one. They did the fusion with the rods in the back of my neck and a rod device in the front for the hernanated disc. Far as me feeling, I feel very good. I will get stiff in my neck somtimes, that is because I don't move my neck enough. Driving was the biggest issue. Cause you will have limited motion of your neck. I use them spot mirrors and the work very good. So your question would be, would I do it again? The answer is yes I would.
I am new to this forum as of yesterday, but had my procedures 10 yrs ago at TCI in NY & you are right about us "oldies" not posting outcomes etc. I did not get back on my old forum bc I was so sick & in so much pain for so long. I got on here bc need my fusion redone & am frustrated with Dr Insinga at TCI aloofness at my recent appt. Had Dr B redo my decompression in 2003 from the mess my local NS made. It was a miracle & worked so well esp with the shunt he put in. They said my neck discs were bad too but never offered to do them together. I said no way 2 brain surgeries is enough! Then 5 yrs later my migraines got so bad again I had no choice but to have fusion C2/3 & C4/5. It went great pain minimal for couple yrs & ROM was pretty darn good. Then 2 yrs ago started to have major migraines & bad neck pain. Went to massage etc & she said I guard that area so much that it was really tense & bad knots. The massages started to make migraines worse so stopped. Suffered until had to go back to TCI cause my arms/hand numb/tingling so bad as well. Dr Insinga who did neck 4 yrs ago saw me & was so aloof. I wanted shunt checked due to side pain & H/A & low back 3 discs bad. He refused to check my shunt or back & only did MRI of neck discs. It was bad with huge osteophytes & out of place like a zig zag. Said needed to do surgery again but would probably happen again. Screws still in place etc but I have my concerns about letting him so another one if same thing will happen. Can't help the osteophytes as calcium causes those, but why so out of place on my spine? Pain is horrible & I am down many days week with migraines. Will have it done, but may get another opinion. WIsh I would have went back to Dr B at TCI he is amazing. Also found out I have tethered cord which does not help spine issues. Would love to know if anyone else has had issues with the neck fusion like I have & what the solution was. Most people here said it went great & no more problems. Glad yours went well, just noticed the post was from 2012! Can't seem to find out why those are mixed in must be if someone comments on them??? Not sure how to track my questions or comments to people either if anyone has idea. Tried to find out how to start a thread but no luck. I'm a bit computer illiterate since been out of practice at work 10 yrs! LOL.
After begging for 2 years, Dr. B finally agreed to fuse me (eds). My life has existed in bed for past 10 years and am grateful to have this done, but also petrified. Dr. B's hesitation has been my obesity.
May I ask, do u have Chiari as well...? I can understand his reluctance to do surgery as our weight can affect our safety under anesthesia.
I am sure since he has agreed that something has changed that he feels the risk is worth it....and by risk I am referring to surgery itself as all surgeries where u r under general anesthesia , they have risks for us all.
When is ur surgery date? We do have a thread for u to post ur date so we can post a prayer thread for u.
I had decompression and cranial cervical fusion done last year in TCI with two doctors Dr. Rekate and Dr.Insinga he did the fusion, since last august I had two more surgeries last one just 6 weeks ago when Dr. Insinga he removed the hardware, screws were moving he told me that I have EDS,but mine pain did not go away I still fell this horrible pulling pain on both sides of my neck going above occipital bone as far as top of my head, I fell like my head is position to high, they are telling me that all looks great but I know my head and my body. I'm in bed every day because as soon as I start walking and doing things this horrible pain is coming back and then I get this huge headache from the pulling pain,I know from the begining like three months after the fusion that something was wrong.I'm so scared and I don't know if I should go and see other doctors.I think I will go and see Dr.B if he will see me he is leaving TCI on September first.Please stay strong and positive you are not alone.
Hi everyone, I am so glad that I found all of you guys, there is not much on the internet about Chiari and the cranial cervical instability, but let me just give you a quick over overview, I had really bad headache in April of 2010 for several days, (I had headaches all my life but not like this) my PCP was treating me for sinus infection & since headache were not going away sent me to the ER,after 10hrs the dr on duty not finding anything decided to do spinal tabs.. 3 actually ....spinal tabs results came out ok .. I did not have meningitis!!! But he cause me much more sever headaches now.. no knowing that I had Chiari he bruised my brain which swelled and I had spinal fluid leakage, which caused spinal headaches , they sent me home from the hospital that night, but now I was unable to open my eyes or stand..my head felt like it was going to explode!!! I was bed ridden for 3 days with out opening my eyes at that point my husband (Chris) call 911 took me back to the hospital by ambulance. I had to have 6 blood patches to stop the leakage..and the MRI showed the Chiari...in Oct.23 2010 I had the decompression in Boston, 3 weeks in bed and in Feb 2012 I went back to work thinking it was all put behind me. Instead the constant pain in the back of my head never really went away, and now I have sever dizziness does anyone else seem to have this??? I thank God I also found TCI and had my 1st app. With Dr Bolognese in Feb.of this yr, but my insur. Is really fighting me and I am on my last appeal with them.. Hopefully I can get my surgery by mid Oct. when I can drop them and just do it thru my husbands.. But in the mean time they have made condition worse and I will probably loose my job, because I have been out on medical leave for over 1yr, a job I have been at for 23yrs,,
Did your first Drs rule out ALL related conditions b4 you had surgery? Many times post op issues are not always due to a failed surgery but to another condition that was underlying...such as CCI as you mentioned above or ICP, POTS, Ehlers-Danlos...
It is also possible to have a slow leak at the dura patch if you had one, or scar tissue can develop....there area number of reasons and the last one could be overdoing it, if you do too much too soon it can also cause set backs...we need to listen to our bodies and rest...
I lost my job as well, I thought I was going to be there until I retired....but all this came to a head and had to be dealt with....I have no regrets...and I am sure Dr B will be able to help you.
Hi SelmaS ,
Thank you for responding , I did ask Dr B about EDS but with all that is going on there, he is changing practice,his nurse is also out on medical leave and she was really good in responding to me...my big CONCER rite now my dizziness which is getting worse, which Dr B said it might get better with surger..I just wish I got better confirmation that it would go away , I just can't live this way... I went back to work after my 1st Chiari surgery when the doctor told me it was ok to go back and I was feeling good...it was 4 months post op..but now I was told he should have never done the "decompression knowing that I had the Instability."but at the time I didn't know!!! We don't know we up your live in the hands of the doctors thinking that they will fix and help us.
Hi....yes, I am aware he is leaving and from what I read is also taking Dr. Kudla (sp) the NL at TCI...he by the way DX'd me with EDS so maybe it is just a matter of time after things (move) settle down and they may take a look for it for you....
There is no way with this type of surgery they can give you a guarantee ...I know we all want a more definitive reply on how surgery will help us....
It is very important to know ALL related conditions and know how experienced your Dr is...hind sight is always clear but does not help once we have done things already.
Let your body tell you when it is time to go back to any activity....as no Dr can say in 3 months 4 months etc... as we are all different....
I know waiting is not easy but right now that is all you can do....sometimes a neck brace can be helpful...not sure if Dr B suggested one for you....I was given one by a Dr b4 my Chiari DX and it only made me feel worse as I also have a partially retrofelexed odontoid....
Hang in there as you now have one of the best Drs taking care of you....
Thank you for your reply , it's hard I am scared to death on the out come especially because of my age!!! The younger you are the easier it is to heal quicker,and get back on your feet.. And also the loss of mobility is a very big concern??
I agree...but for much of my life I had limited ROM due to this condition....post op my ROM was soooooooooo much better...this was a decompression not a fusion and since I was/am doing well, I put off a fusion as I did not see a reason for it...
Not knowing your age I can tell you I was 48 when DX'd with Chiari and was 49 (2 months b4 my 50th) when I had my decompression surgery....I do have ehlers-danlos so I knew to expect a slow recovery...but I am doing well 5 yrs post op.... and if I should need a fusion if things worsen for me I will ....as long as my Drs feel I will benefit from it...
I was 49yrs old when I had the decompression, I am 51 now I will be 52 in Nov. And I will probably have surgery mid October.. Even Dr B said because he has to redo the decompression &other fusion the surgery in long about 10hrs, and 6 months with a neck brace 2 to 3 months to be stable on my feet walking
My surgery was 7.5 hours...was only supposed to be 3 to 4...not sure why it was longer....I did have tissue harvested for my dura patch and not sure if that along with me having EDS played a role there....
I am older then you and if I had to have a fusion I would,,,,but for now I am fine with out it,...you on the other hand had one that needs to be re-done...
The time frames may feel long now and while you are in the middle of it all, but once you are feeling better it should feel like it was a flash in the pan....fast and not as bad....I pray that is how it works out for you. <3
I also had Dr Rekate, who did my decompression Aug 2012, with Dr Latefi doing my fusion, C1,2,3. The following March, Dr Rekate had to remove bone that had regrown between the rods.........then last October, Dr Rekate and Dr Insinga removed even more bone.
I fell in aug 2011, that was the injury that caused my Chiari, I wasn't born with it. I have had a headache EVERY DAY now for 3 years. I have some good days, when it is tolerable, but I have lots and lots of sucky days. And I have developed migraines on TOP of my regular headaches. I say headaches, but the pain is from my hairline to the tip of my nose, and temple to temple, so it is more FACE pain. I am skyping with both doctors next week. I am very frustrated, and discouraged. I need a break. I don't want any more surgeries. But I am wondering if I would feel better without these rods in my head. I am glad to have found this forum topic. I want to know if there is anyone out there who has had the decompression and fusion who has NO PAIN.
Hi, sorry to hear that your going thru do much pain especially after having all those Surgeries. I had my decompression done in October 2011, and now I need to get also to fusion of the C1& C2, I am just waiting on my insurance... I was just wondering, where are your doctors from? Did you have a lot of dizziness before your surgery ? My doctors seem to be very confused ,when it comes to this dizziness ,but it has increased drastically since I first got diagnosed.. Your not the first person that I have hear of that has had problems with the after CCI surgery ...but the person I had spoke to was going to see my doctor to see if he can help her ...good luck keep us posted
Not sure if there is no pain after these surgeries...should be less pain and I am grateful for that...but no pain....???
I did not have the fusion and was told I would need it as I would also need to be de-tethered....only had decompression and happy that is all the further I went....does not mean I may need to get one or both down the road.
I went to the Chiari Institute in Great Neck, NY. I agree with you SelmaS, I don't think I can expect NO PAIN...although that would be lovely, but I didn't expect a slammer every day either. I liked Dr Insinga...I hope they have some answers when I skype with them on thursday.
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