. I had decompression w duraplasty and laminectomy Jan '12. after my surgery I began experiencing a lot of back pain. Still have headaches and the numbness 2 days/week. An MRI was ordered of my spine and was just told i now have a tethered spinal cord at L1. Surgery is recommended. However, i'm not really sure i want to go thru with another surgery. I have some incontinence issues as well. Was told yrs ago after hysterectomy i needed bladder suspension so i figured it was from that. However i have had a handful of times with bowel incontinence (not quite making it to the bathroom in time. My surgeon said she thinks blood from my decompression ran down my spinal cord causing the tethered cord My question is how common is this? Does anyone else have similar experience? Im also looking for some important questions to ask my surgeon before i decide if i should go ahead with it The thought of another surgery depresses me and im concerned about the risks which she said are spinal leak, nerve damage or not getting better. As a side note, Its interesting to hear so many say not to see a chiropractor after chiari decompression (both here and elsewhere) I specifically asked my NS if i could and she said i could. At my follow up after my mri , my surgeon said there is plenty of room now since she removed the tonsils and she's not worried about me seeing a chiro. Still hesitant. I do have EDS and constantly feel the need to crack my joints. My husband wants me to just get the surgery. He just wants me better. The last 2 yrs have flipped our life upside down. My chiari was discovered after i knocked myself out with a car door. Apologize for rambling but this is overwhelming for me. Any advice or suggestions (selma? I see your comments a lot. Would love to hear from you).
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.
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.
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.
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.
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!
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?
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.
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.....
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"
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.
DH had his heart cath today. They found 85% blockage in his right coronary artery and 75% blockage in circumflex on left side. They put a stent in on the right side. He'll go back on the 17th for the left side stent. Dr wants to give heart time to heal from this. I was worrying so much. Lost bladder control. Had hysterectomy yrs ago so didnt have anything w me. Labor n delivery gave me some pads. I guess God was telling me to quit worrying. He's got him so i guess he figured he'd give me something else to focus on. Quite the sense of humor. Lol. At least i didnt lose bowel control. That sometimes happens too. So i should be thankful. Actually im very grateful we caught this and he had a cardiologist willing to listen to our concerns with his family history. He actually thanked us for being being so persistent. It pays to listen to our gut feelings! Thanks for your prayers. Xoxo.
Lost bladder control again tonight. And vomited again hard. Maybe too much stress of the day? Now have terrible headache and fire breathing heartburn. Does this ever stop? I hate to complain when there's so much to be grateful for. The incontinence seems to be getting worse. Happening more often. I think i'll just get some "diapers" until i can get 2nd opinion on tethered cord. Want to wait til after the holidays to do that as we are going to MA for the holidays to be w grandkids but dont want to be a debbie downer on the whole trip. Do you have word problems? I was trying to talk to dr today and my words came out all jumbled. I was already stressed and worried and burst into tears. It happens a lot. Mostly i just laugh when it happens at home but its so embarrassing when it happens outside of my home. The right words are in my head but either come out as something different and off the wall or just complete mumbo jumbo. Its doesnt appear to happen just when i'm stressed either. Sorry to vent but want to keep my stuff to myself when DH is going thru so much. Dont want him to stress and worry with all hes going thru. Yesterday i did a mild yoga cd that i try to do several days a week but afterwards my legs shook so bad he made me lay down. I'm feeling very overwhelmed. Dont want to be a burden and cause him more stress. If only Calgon could really take me away....
I still search for words and have jumbled issues at times, not as often as b4 surgery....But I still have issues needing surgery...so they r to blame...lol...it can take time to notice changes and see that u r getting better post op...but it is possible to do well.
U really should call ur Dr about the frequency of loosing ur bladder and vomiting, it may indicate something to him we r not aware of....I know u have plans, but it may be better long term to get some advice, then try and push thru.
I loved that commercial...Calgon, take me away...where no idea but get me outa here...lol...
The easy crying issue is still one for me, I cannot take a sad situation as I make it really sad...lol...I can not control my sobs sometime and many times I do not understand y I am so upset....but I know it is Chiari...and with TC, it is pulling on our brain stem so until I get the release I am sure this will be an issue....so far my bladder issues r nothing like urs.....but I get the times when I do not feel the need to go and will get hot or pain and my Dr said that is all from the TC and the neurogenic bladder...same with the bowel....I go from being constipated to having the runs, to only going a few times a month to 6 times in one morning....ugh...crazy.....
And it makes me feel awful as well....chills etc... yuck....
I still suggest u call ur Dr and let him know about the added stress but tell him how ur bladder has been too,...oh and the vomiting....call.
Grazie mille Viva and Selma. DH isnt outta the woods yet as he has another procedure scheduled for the 17th. Plus he's still having chest pains. Cardiologist thinks he may have GERD too adding to pain. So they're going to watch him closely. We just brought him home from the hospital.
Did ur NS remove your herniated tonsils during surgery? Mine did. She doesnt seem to think anything about the word difficulties. I had post concussion syndrome after hitting my head and starting this whole ordeal so i think they just attribute it to that Mine haven't gotten better or worse since surgery (Jan '12). I rec'd paperwork that she forwarded to disability company and it stated "pt is continuing to improve, however midthoracic pain and pain in legs is concerning as well as intermittent bladder and bowel incontinence. MRI to be obtained of spine for evaluation. Her MRI of brain and cervical spine looked at today and i do not think her continued symptoms are chiari related.".
Um what? So my headaches numbness and shakiness are related to what then? Of course I saw her before i rec'd this report. Elsewhere in this report under neuro exam everything is good and healthy. Um the only tests performed were squeeze my fingers and walk across the room. My low back has to crack before i can walk or its very painful. She commented after hearing the sound that wasnt good for my age (41) then told me maybe im just getting old. Again what?
So i see her again after spinal MRI (before i got this disability report) Everything looks good but she thinks tethered cord at L1 plus she used all kinds of terms i cant remember. Was in shock bc she recommended surgery again and wasnt expecting that She said tethered spine could cause stabbing pain in thoracic region and my headaches. I do have some herniated discs but she said nothing to worry about. It feels like im being stabbed in the mid back or it will take my breath away. Low back pain is more dull and irritating although sometimes take my breath away and will radiate down my legs. Muscles around back neck and legs are so sore Some days i look like an 80 yr old trying to move around. I explained that i was told after hysterectomy 6 yrs ago they thought i'd need bladder suspension so i figured that explained bladder incontinence. However not the bowel which has happened about a dozen times. Just cant make it to bathroom quick enough. I have IBS (the combination of both) and spastic colon. Since always had digestion probs i was kind of dismissive / not wanting to believe terhered cord dx. Now tho its happening more. I'll be in shower and wont even know that my bladder is releasing. And it is becoming more than just a small leak when i sneeze, cough, vomit
Gag reflex is very bad. If i see someone spit or gag i will either gag or vomit even if its an animal I know stress causes me to vomit more. Really hate vomiting. Sometimes i cant blow my nose or brush my teeth without gagging or vomiting. Is this related to cm, eds and tc? Idk. Drs dont seem to take much stock in it so i just deal with it had scopes do have significant GERD Thats why i want to see a specialist. Dr Rosner is high on my list. I think if i call my current NS she'll just say lets do the surgery. I want to research more n get a second opinion Not sure what dr to turn to if i were to call about newest stuff My PCP is great but not knowledgeable about CM TC or EDS. He just believes what i say and is supportive in referring me if necessary. I dont do well w meds and he knows its better for me to find and treat the cause than give me meds to treat symptoms... Unless im really bad. He knew me before accident and has since told me i need to remove the superwoman S from my cape. Life is different for me now. I dont diagree with him there.
Temperature problems are horrible as well. If hands feet and/or nose get cold, the only way i can warm up is to take a hot bath. If i get to hot i get so lightheaded and have to lay down right where i am or I'll pass out Only passed out 2x since surgery. Sometimes i cannot get out of the bathtub. Maybe water is too hot. idk.
One more thing before i end this long book is i'm encouraged to walk. Back in oct after i had my spinal MRI (same day) i took a walk w my DD. it was a beautiful day. We walked to end of my street 2/10 a mile. At end of street is a small pond. I like to feed the ducks. We were walking down the hill toward the water and i pointed to a hole and told my DD to be careful not to fall in it. After a time we got up to leave and started to walk up the hill. I turned to wave to neighbors and when i turned back stepped right into hole (bout a foot deep) and fell. Something pulled in my back but more in the back of my head/neck Neck n shoulder pain has been worse since then in addition to HA. I told NS but she said nothing about it. So I dont really think calling any of my current drs will do good. Sorry to go on n on n seem like a downer.
As for tonsils she said its better to just remove them. I use that to my advantage when kids do something ridiculous "they removed part of my brain, what's your excuse?". Lol. They laugh. Never heard of ICP. 've heard of POTS but will look it up. Dont know much about it. I have a hard time standing up for a full shower thankfully i have a seat in my shower i just get light headed also have low bp but consume crazy amounts of salt eat it by itself drs never seem concerned Already have dx of EDS type 3. The TC we'll see what Dr R says. I do keigles. I think stress has just worn me down. Now i have a fever. Going from sweating to chills. My mom made a huge pot of chicken soup for us. Just one more thing to be grateful for.
Thanks for the advice and the support. Much appreciated. Im excited for you to go play with your 4 legged grandchild this wknd Hope your DD had a great birthday.
Dr. R. will want you to have a tilt table test, which will determine POTS and/or NMH (neurally mediated hypotension).
Dr. Bailey, the cardiologist who works with him, is the one who said compression "is like a slow hanging". that's why there are SO many symptoms, as different organs are affected--and even shut down.
That's why stomach problems are so common, as eating is less important than keeping the heart rate up & trying to maintain a semblance of homeostasis. (I say "semblance", as my BP & body temp are all over the place).
Thanks ladies. Will definitely check out the info you gave. POTS is a possibility. I guess i'll be giving Dr R a call tmrw or Monday. So much to do between regular appts with PT and therapy plus all the paperwork involved btwn long term disability thru my work and social security. Have a great night and i'll keep you posted.
Pushed thru and got a lot done today so I called Dr R. His ofc closes at noon on Fridays. I left a msg and hope to hear back next week. I recognize a lot of symptoms w POTS. There is a specialist here bout an hour from me so i may contact him as well. I hate to keep looking for stuff bc it almost makes anxiety worse but it would explain a lot. What i experience doesnt sound as bad as what ive read others go thru but i almost fainted after bath last night. Didnt use as hot of water as i usually like and rinsed off with cool water before getting out Made it to my room and had to lay on the floor until heart stopped pounding. Then had to run to toilet n lay on cold tile floor after.
Now im going to rest before going to PT. have a great day!
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