Hi and welcome to the Chiari forum.
May I ask, did they rule out TC b4 ur surgery? Many times we have it b4, as I know I did and my Drs debated as to which surgery to do first...but it will cause ur cerebral tonsils to re herniate, and have bladder and bowel issues....lower back pain, leg pains,HA's...the works...really.
The other thing is since u have EDS that plays a role in this too as u run a risk of it re-tethering....
Another question what type of dura patch was used for ur duraplasty?
I also have TC...had the decompression and am holding off on the TC release as long as I can...I also have EDS...and I know it could mean several surgeries....
This summer I went to the ER with severe back pain, only very strong pain meds helped...not sure if it was from my TC, but if I only have a flare once in a while I am ok with that....
U have to have a Dr that knows to look at u for ALL related conditions and see which is causing u the issue....
If u have EDS u may also have instability too...have u been checked for that?
Sorry for all the questions, but these are the questions that once answered help answer ur questions.
I've been having trouble posting a reply so im going to try sending several shorter replies to see if this works.
Thank you for your reply. That is a question i want to ask my surgeon - to compare my MRI before surgery to after to see if i had the TC before. That wasnt mentioned. I always think of ?s to ask after my appt. The dura patch was bovine. I told my kids if i randomly moo after surgery its bc im part cow now. Lol. Trying to find humor in this frustrating situation any way i can.
Im not sure what you mean by being checked for instability bc of the EDS. My PT says we are working on strengthening to help with instability and bc I'm so hypermobile she tries to be careful when working on me so as to not injure me. My Rheumatologist recommend doing pilates as opposed to yoga so i dont hurt myself bc i am so stretchy.
Trying to find a dr thats familiar with all these somewhat rare issues is not easy. Most drs i saw before my dx had never heard of chiari or if they had werent that familiar with it. I found my NS on a chiari web board My NS is opening a chiari clinic here. She does about 70 chiari surgeries a year and is the chief of pediatric NS at the hospital. I like her and am confident in her abilities but I do question how much she knows about EDS and some other things She said a radiologist probably would not look at my MRI and dx a TC but she thinks thats what it is. That statement alone is enough to make me want to research this more before doing another surgery.
Also nothing was mentioned about the tonsils possibly herniating again after TC surgery. Currently i have terrible back pain mostly in my thoracic region and my neck and shoulder (but the neck and shoulder is probably related to a fall i had and something pulled in my neck/back of head - ironically the day i had and right after my MRI) I do have a herniation at T6 but she was not too concerned with that. She said the thoracic pain was from the TC and possibly the headaches as well. Im not opposed to getting a second opinion but trying to find another dr familiar with CM, TC and EDS is not easy.
Pt 4 - last
Another thing that i question is why she says she has no issue with me seeing a chiro after the decompression bc i have SO much room when everywhere i read says stay away from chiros when you have chiari. My chiro said he wouldnt work on me after seeing all the herniations in my back unless it was to do decompression therapy ($100/session) not something i can afford these days. This was before the chiari dx.
I apologize for all typos. I am typing on my phone. No home computer. I really appreciate any response. It helps to not feel so alone in this. Most ppl are so unfamiliar with these issues and family and friends while most are supportive dont really understand. Some have even called me a hypochondriac. As if this is a "fun" way for me to get attention. I think not. Anyway. Thank you so much for your feedback.
Well IMHO 70 surgeries a yr does not a specialist make...sorry....JMHO.....
Next, those with EDS are prone to rejection of foreign matter, so ur dura patch could cause u issues, it may not, but to be safe my drs harvested my pericardium for my patch.
With TC, they can not always see it on a MRI, but there r other tell tale signs, usually an elongated brain stem, a sacral dimple, bowel and bladder issues...so there are ways to dx it even if they can not see it, but the way ur Dr said it may have happened I never heard of...yes, we can get it from scar tissue after surgery....but I never heard that way....
I would suggest u get another opinion from a Diff Dr, one that does this day in and day out...see how is this affecting u....I do not know if PT can help instability, but I do know it can help some as the neck exercises I did post op have strengthen my neck and I do not feel as wobbly as I use to.
Did u have MRI's of ur thoracic and lumbar spine?
I dont disagree with you about a specialist. But there are not many drs in my state that are unfortunately. She was the best i've found so far I had an MRI of brain, cervical thoracic lumbar and sacral both before surgery and after. No dimples just pain, incontinence probs, weakness headaches legs arms hands are shaky often and i get whole body numbness 2 days a week. (numbness tends to happen after i do too much - cleaning ex. Vacuuming then clean bathrooms. Next day im in bed all day). Its not always after i overdue it but ive noticed it happens a lot When i say im numb i can feel my body if i touch but its almost like a constant vibration (like cell phone vibrating) thru whole body and im so weak. I sleep most of the day/ night. I had post concussion syndrome after i hit my head and had to literally fight to stay awake. The fatigue has gotten somewhat better since surgery but its definitely not gone. After i hit my head my words came out wrong which freaked me out and then i started waking up numb. I tried to return to work but they would make me sleep somewhere bc i couldnt function. Missing so much work due to numb days i lost my job. First it was i have pcs but that didnt really explain numbness n shakiness when walking. Finally after several NS reviewed MRIs one dr told me the CM could be causing my issues but he cant say for sure and he wasnt that familiar with it so he didnt recommend surgery. More drs. Dxs of its just depression blah blah. Kept searching. Found my NS decided on surgery. Life is turned upside down. Still cant ride my motorcycle. My legs wont hold it up.
NS may have said TC caused from scar tissue but seems like she made a comment about blood getting in spinal cord and that caused it. I wish someone else was with me to catch what i didnt wasnt expecting rx for another surgery. I think i kinda went blank after that. I will probably get another opinion just have to start the search again for one familiar with all issues. Thx so much for your response. If you have any recommendations on drs pls send me a message. Thanks again.
There are no specialists here either, I had to go out of state and it is well worth it to do so....
DO not vacuum....u r still healing and it will cause issues like that and have u down a few days after....how soon post op did u start cleaning like that?
A motorcycle, I should say not...that is heavy and a bumpy ride...not much u should be doing that way at this point......
Where r u from what state? How far can u travel...most of the specialists will review ur MRI's b4 they see u, u may want to send them to get an opinion.
Lol. It was several months maybe 6 after surgery i started vacuuming n such. I started slowly only doing part of a room then laying down. Its hard being home and not being able to do much. I have 2 teenagers that arent home much due to ec activities. My sons in college and works and has a gf My husband is OTR truck driver and only home for 1-2 days every 10-12 days. I have 2 100# dogs. Lots of hair. Drives me crazy to not be able to do much. I do not ride anymore. Havent in 2 yrs. i try occasionally (1-2x) to sit on it with supervision but that hasnt turned out great. I was a very active person before. Rode motorcycles, exercised, salsa danced. The only thing i can do that i used to is read. And thats just been since summer. I tried to teach some salsa moves to my daughter n friends but fell on the floor. So frustrating.
I live in michigan. Im travelling to MA for the holidays next month. First time travelling since this started Nervous about long car ride. Sitting too long hurts my back. I usually need to be reclined. Spend a lot of time on heating pad or soaking in epsom salt baths. I didnt think about sending MRIs to a specialist. Great idea. Thank you
I know how u feel I went Swing dancing every Tuesday until I just went and would watch, until I could not watch ne more,....it is hard, but if u do too much when recovering u could have set backs....not worth it...and I would get a few lint brushes to try and control the dog hair...I know that is not the best option, but easier on u.....
Take a large fluffy pillow, and sit in the front passenger seat and recline it so with the pillow u r still upright....this helped me with longer trips, I had surgery out of state and my DD lives out of state so I had to find a way to travel....and my head bouncing around was the biggest issue.
DO the neck exercises, it will help too.
Thanks so much. I cannot tell you how much i appreciate your feedback. I have the chiari pillow, a tempeurpedic (sp?) neck pillow and will be taking them with me. I have been reading your posts for a yr off n on. You really help SO many ppl. I for one am very grateful for you.
I also swing danced lindy hop etc but the latin dances are just a part of me. I noticed ur into sewing. My husband just got me a sewing machine for anniversary present. Ive always wanted to quilt so im thinking of taking some classes after the holidays. If i can figure out how on this not so smart phone i would like to add you as a friend. Fyi. I also have gerd vomit almost daily have constant sinus drainage and tachycardia with low bp. I noticed on ur page u have some of the same. Im sorry you have all you do but feel excited to finally have someone to connect with. Thank you. Thank you. Thank you for taking the time to respond not just to me but to all others. You are a blessing!
I am so glad I was able to help.....
I also did Lindy hop, East Coast and West Coast Swing, shag, and salsa too,,,,so many I can not remember.....but I do miss it...
Try elevating the head of ur bed that can help with GERD...also do not lay down until at least 3 to 4 hrs after eating.....
Of course avoid foods that will trigger ur GERD issues..... and try an antihistamine at night it will help u sleep and get rid of PND which adds to GERD symptoms.,
Boy are you bringing back memories. West coast, east coast, balboa. Those were such fun times. Weekend workshops in dancing. Those were the days.
I take benedryl quite a bit before bed. It does help. It seems when i find something i can eat i will eat it quite a bit and then my body develops a reaction to it. Im supposed to see an endocrinologist bc my body doesnt digest food that much. The food stops breaking down in my system and looks the same upon release. The lightheadedness when i shower or stand for too long, spastic colitis, panic n anxiety disorder, depression Ugh! It goes on.
This is no fun to discuss. On a happy note. I talked to another member - marine corps girl i think about chiari ribbons. She also does quilting. I told her about learning to quilt. Maybe i can make some zipperhead quilts once i learn how. This has got me excited. Will give me something to DO! Im so grateful i got the nerve to post to this community.
Wanted to ask which specialist would you recommend. CI in NY? I think theres another specialist in IL which is closer to me or someone/where else?
Since we r all different and u have to like and trust ur Dr too, I feel u have to choose ur Dr, so I do not suggest Drs, NY, CO, MS, NC....have some of the better Drs for Chiari....
I did travel out of state as it is more important to have a well informed and experiences Dr then to have one close to home that is MHO.
I love to sew and I do make quilts and our Friday Fribble thread we do talk about what projects we r making.....
What type of sewing machine did u get? I want a serger.....and my machine fixed....I miss my machine, I ma using my mom's old one right now and I am going nuts as it has issues....lol...
Thank you. I understand about recommendations. My dd stopped breathing an hr after i brought her home from the hospital. Thankfully her pediatrician was a respiratory specialist. He was great. Doesnt care about ur feelings. He cares about his patients and doing the best for them. That is the type of dr i want. Someone that knows their stuff but isnt such a know it all that they think theyre God. i learned to trust my gut with hosp drs with my dd Just bc they say something doesnt mean thats the way its gonna go. I have a friend that lives in NC. If the drs there are good that may be an option. Could you msg me the names. You dont have to say who to go to bc i'll do my own research but it could give me a starting point to see who can read my mris and records.
Sewing machine is a Brother XR 1300. 130 built in stitches. I havent used a sewing machine since 7th grade. Im going to see about taking some classes at JoAnns w my machine or some other place bc i need to learn how to use it first, get some basic sewing down then start on quilting. My cousin was a seamstress for many yrs. she recommended what kind i should get. Unfortunately her circumstances have changed so she cant teach me but i'd love to have something creative to do. Love my dogs but having a creative outlet to pass the days would be great.
Praying for Molly tmrw. I will be thinking of her and sending healing energy all day! Omg 18 surgeries. I cannot imagine.
We have a list of Drs the members here have been to, u can use that list to research Drs.....I had it on this first page, but u can also locate it in our Health Pages.....http://www.medhelp.org/health_pages/list?cid=186
That sounds like a great machine ...same one that they use on Project Runway....lol...a Brother....
When I got my machine 30 some yrs ago, I had free lessons from the place my DH bought it...it recently broke....I can not change the stitch...so not sure what is wrong, so I have my mom's old White sewing machine..and it is so old it does not work right, the screw that holds the needle in loosens as u sew, then the needle falls out or breaks...ugh...what a mess, and the bobbin winder does not work on that machine, so I use mind to wind bobbins, and hers to try and sew.,..lol....
Yes, Molly has been thru a lot, too much in a short time....but she is a very strong girl and she will get thru with out prayers and all the love of her family and friends. <3
There are 2 Drs down that way, MD and NC so u would have a choice depending where ur friend lives.....
Check out the Friday Fribble thread : )
Boy ive been busy with the links you provided. Lots of great info. The fribble thread is great. Thx so much
Now im in hospital. DH having chest pains. Dr sent us to hospital. Its gonna be a long day.
Oh my I am so sorry ...sending Prayers he is ok.....
I am glad u enjoyed the threads and links : )
take care of ur DH and ur self <3
Thank you. They're waiting for a bed in cardiac unit for him so i came home to rest on heating pad n take meds before heading back Those chairs are not good for pain. Any word on Molly?
I posted on the prayer thread that they were behind schedule and not in the OR yet, I have not heard nething lately,...I guess I will have to txt her mom again and ask.....
SO they r going to keep him....I pray he is alright.
Same with u, oh I know chairs in waiting rooms r the worst.
Thank you. They're keeping him overnight. Tmrw he'll have an echo and stress test. If all is good with that they may just do a heart cath as he has extensive family history with "widowmakers" - young n old. Also doing a complete neurological work up bc hes having slurred speech, really bad dizziness n blurred vision. The care he's getting here is outstanding. Different hospital than we usually go to. Hope your enjoying your friday n "fribbling"
Thanks for the update....glad he is getting good care, it is not always the case in some hospitals...so I am glad he is in a good one.
Hope u r resting up....
I had a very good day,. fribbling was a little slow today....: (
Dr sent us home last night after stress test came back "good per se, however did show some valvular issue that we believe has nothing to with your pain". Demanded to speak to cardiologist. One person there was a lil full of herself. Cardiologist said we could stay in hosp til mon and he will do heart cath then or we can come home and call on monday to schedule heart cath. We came home as dr felt he was safe to. I am "numb" headaches n bad back pain today. :( pain woke DH up at 330 am. Pls say some prayers for him. Our stress levels are crazy high.
Hopefully there is great news on Molly. Would love to hear something happy and good to get outta myself n my situation My physical/emotional self wants to pull me down but the stubborn leo in me wants to fight and look toward the light.