Hello everyone! Six years ago at the age of 26 I was diagnosed with CES with saddle anesthesia & neurogenic bladder/bowel. I had a discectomy, foraminotomy and laminectomy L4-L5 S1-S2. I spent a year learning to walk again & in bladder therapy. All successful. I walk independently & have fully regained continence.
My questions are-
1) Since surgery I have had horrible leg cramping and spasms that havent decreased In frequency? Normal?
Any time I stretch my legs or use the muscles they instantly spasm.
2) I feel like my rectal muscles are always contracting, like I'm constantly kegalling back there and I can't relax. Has anyone experienced this? I feel like I'm going crazy.
3) Lastly I have no hardware because my surgeon didn't want to limit my mobility do they ever reevaluate my spine? I have had no imaging since surgery.
Hi jaimie13. I’m glad you found us here. Walking and having continence is wonderful. Congrats. The rest sounds very uncomfortable. My condolences.
I don’t have any “hardware” either, and I’m glad. Other than not having hardware,, we are really different. I’m in a wheelchair. Here’s why I’m glad I don’t have hardware. I believe that having metal implanted into the body sets us up for diseases. The body is constantly trying to eliminate the metal, so it finds its way into the body’s fluids and moves out of the body, slowly, through the kidneys. This is a burden to the kidneys. Also, heavy metals in the body attract bacteria...who then want to live there. So, surgeries that implant “hardware” has pros and cons,...sometimes even more than the doctors might warn us about.
Alternative therapy advocates have a lot to say about metals in the body. Mainstream science is also concerned. Here’s a research article about it: www.ncbi.nlm.nih.gov/pmc/articles/PMC3710008/ “The effects on bone cells of metal ions released from orthopaedic implants. A review”
I admit ignorance on some terms you used. But I Google terms that I don’t know. In case it can help someone else, here’s what I learned.
“Discectomy is surgery to remove lumbar (low back) herniated disc material that is pressing on a nerve root or the spinal cord. It tends to be done as microdiscectomy, which uses a special microscope to view the disc and nerves.” www.mottchildren.org/health-library/hw218424
“Laminectomy, laminotomy, foraminotomy, and laminoforaminotomy are related procedures in which a surgeon removes bone from the spine. ... A laminotomy is performed to remove a herniated disc during a microdiscectomy or to allow the surgical treatment of a synovial cyst.” www.columbiaspine.org/treatments/laminectomy-laminotomy-foraminotomy-laminoforaminotomy/
Have youtried sretching 4 o 5 times a day for a few months to see if the legs become less sensitive? That worked for me.
I have tried stretching but not 4 to 5 times a day. I wi'll give it a try! I need them to be less sensitive because I wanna gain muscle tone and flexibility! I have a 3 yr old and she deserves the best!
Have youtried sretching 4 o 5 times a day for a few months to see if the legs become less sensitive? That worked for me.
I have tried stretching but not 4 to 5 times a day. I wi'll give it a try! I need them to be less sensitive because I wanna gain muscle tone and flexibility! I have a 3 yr old and she deserves the best!
Do you take any medications, or have you tried some?
I step in the water, but the water has moved on...
I have tried stretching but not 4 to 5 times a day. I wi'll give it a try! I need them to be less sensitive because I wanna gain muscle tone and flexibility! I have a 3 yr old and she deserves the best!
Do you take any medications, or have you tried some?
I do not take meds. Ever since my surgery taking meds give me major anxiety. I don't even take Tylenol. My doctor told me to try gabapentin, but I have heard horrible things about it!
I did talk to someone today who's husband is a physical trainer & he is going to show me some new stretches 🙏.
I do not take meds. Ever since my surgery taking meds give me major anxiety. I don't even take Tylenol. My doctor told me to try gabapentin, but I have heard horrible things about it!
I did talk to someone today who's husband is a physical trainer & he is going to show me some new stretches 🙏.
Too bad you cannot try meds. Baclofen would be the first line intervention for your problem, then gabapentin. I find baclofen pretty harmless, as do most users, which is why it's been the go-to med for spasticity for many decades, but you probably can't change the way you feel bout it, so carry on. Hot baths?
I step in the water, but the water has moved on...
Yes, jaimie13, good or you for not taking harmful medicines. Baclofen causes brain damaga. Doctors had me on it for maybe a year. I didn’t have internet at the time, so I took whatever they gave me. After I researched it, I quit taking it. I regret mot objecting to it sooner. Here’s a research article.
Baclofen side effects are explained in this medical research: “...Furthermore, caution should be taken when treating patients in the recovery phase of brain injury because there has been some evidence of deleterious effects on brain plasticity.4 Withdrawing baclofen treatment has been associated with hyperthermia, seizures, and altered mental status,19 but these symptoms can be avoided by tapering off the drug gradually.” www.ncbi.nlm.nih.gov/pmc/articles/PMC4349402/
Doctors also had me on gabapentine. As you said, it’s awful stuff. Here’s a list of its side effects.
Gabapentine may cause depression. www.healthline.com/health/gabapentin-oral-capsule#side-effects4 "Serious side effects and their symptoms can include the following: Changes in mood or anxiety. Symptoms can include: thoughts of suicide or dying attempts to commit suicide anxiety that’s new or gets worse crankiness that’s new or gets worse restlessness panic attacks trouble sleeping anger aggressive or violent behavior extreme increase in activity and talking unusual changes in behavior or mood"
Yes, jaimie13, good or you for not taking harmful medicines. Baclofen causes brain damaga. Doctors had me on it for maybe a year. I didn’t have internet at the time, so I took whatever they gave me. After I researched it, I quit taking it. I regret mot objecting to it sooner. Here’s a research article.
Baclofen side effects are explained in this medical research: “...Furthermore, caution should be taken when treating patients in the recovery phase of brain injury because there has been some evidence of deleterious effects on brain plasticity.4 Withdrawing baclofen treatment has been associated with hyperthermia, seizures, and altered mental status,19 but these symptoms can be avoided by tapering off the drug gradually.” www.ncbi.nlm.nih.gov/pmc/articles/PMC4349402/
Doctors also had me on gabapentine. As you said, it’s awful stuff. Here’s a list of its side effects.
Gabapentine may cause depression. www.healthline.com/health/gabapentin-oral-capsule#side-effects4 "Serious side effects and their symptoms can include the following: Changes in mood or anxiety. Symptoms can include: thoughts of suicide or dying attempts to commit suicide anxiety that’s new or gets worse crankiness that’s new or gets worse restlessness panic attacks trouble sleeping anger aggressive or violent behavior extreme increase in activity and talking unusual changes in behavior or mood"
This terrifies me! Im so glad someone else is anti-meds! I have found massages to be temporarily beneficial. I'm gonna get into the gym & hope for the best I guess!
I also haven't seen a neurologist since my surgeon released me, no new symptoms, but should I follow up with someone, do you know?
I don’t know, jaimie13. I haven’t seen a neurologist or any specialist since I was released either. But I have no useful movement of my leg,...nothing to rehabilitate. I fought my way out of nursing homes so that I could have my herbal remedies. I couldn’t even get medical bowel and urinary help when I needed it while in the nursing homes. Texas has the (documented) worst nursing homes in the nation. Give us a little more info on yourself on your profile beneath your avatar? If I click to check your story, I would loose what I’ve already written here.
Please ask your doctor about CBD oil im in month 2 of using it and spasms are almost gone, muscle tone has lessoned greatly , Dr wants me to slowly start to wean off baclofen on advice of my physio who see's my differences with the oil.
If you decide to try this get it from a reputable company and make sure its not hemp oil but the real deal made from high grade Sativa marijuana plants. this way you can get pure CBD with no THC in it which is what makes you high.
Side effects listed usually affect a small percentage of people taking a med and most of the time, using internet research, we can find out exactly what percentage that is. It is always important to write down our own experience daily or weekly while taking any medication. usually with SCI there are no easy answers. Some folks thrive on medication, some have trouble, and most of us benefit from minimizing whatever we take. Since my life consists of being curled in a ball on my bed, without appetite, when I go without meds, I'm very happy to take a few and feel well enough to live a satisfying life. Sometimes supplements help, sometimes they do not. Sometimes they can be very harmful but it is quite difficult to find "side effects " for supplements on the internet. There is little research since they are not regulated. A good acupuncturist or herbalist can be helpful in this regard.
I don't think being against all medications as though this were a crusade, makes sense. Be careful out there, folks.