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Tethered spinal cord after chiari decompression
. 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).
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
or laugh.
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.
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
or laugh.
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.
Im glad to hear that yourDH has been treated & is better.
Yeah, watch out for that stress--it does not help, & most definitely makes things worse.
You could try some yoga in a chair.
Yeah, watch out for that stress--it does not help, & most definitely makes things worse.
You could try some yoga in a chair.
COMMUNITY LEADER
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.
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....
COMMUNITY LEADER
Wow...he is very lucky.....those r big obstructions....I am sure u r feeling better now too knowing he is going to be better....
When it rains it pours...huh?
Sending Healing MoJo......for ur DH.
Keep me posted on his progress ((hugs))
Hi friend
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.
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.
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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.