Post by dstrangio on Jun 7, 2014 11:10:09 GMT -8
I don't know how much of this information is relevant for my final questions, but here is everything I can think of to tell (Skip to the bottom for the questions):
I was run over by a 2 1/2 ton truck in 1984 when I was 7 crushing my T10. I was paralyzed from the waist down for about a month and then regained movement and body functions. After I went home, the doctors insisted I use crutches and braces. I was fed up with the crutches because they only hindered me using my legs the way they were meant to be used and instead used my arms a lot more than I should of. I got rid of the crutches about a year later and I am fully ambulatory. I have spasticity from the waist down.
The doctors assigned to me had no plans for me back then and were really seeing me to charge my mom money. For the last 5 years or so I have been investigating what can be done from various bay area doctors.
The first insight into all this investigation is when I came to a UCSF clinic for a pain in the bottom of my feet (they did not declare it was plantar fasciitis), but one of the doctors prescribed me Baclofen at about 30mg a day orally. That was great! I was able to get out of a chair and walk with out feeling the tightness of my muscles restricting me. I didn't feel like I was stiff all the time because my muscles were loser. I could walk with out dragging my body with me. I could walk and keep my balance while keeping my hands in my pockets. I could stand and prepare dinner with out sitting down to chop vegetables. I sweated less because my body was being used more efficiently. I could walk for long periods of time with out feeling the need to sit and rest.
This doctor then prescribed 60mg a day seeing how it worked so well. That did not work so well; I lost a lot of my balance and in general I was too weak. This caused my hip flexors to become even tighter than they already were causing a pull on the back of my right hip bone making lying on my stomach uncomfortable. Mean while I was in physical therapy for the regiments of Baclofen, but not at one who knew how to deal with my type of injury. I had went to Italy for 2 weeks which proved to be more walking discomfort then any other trip I have taken in the past before Baclofen where walking was more then a mile. My legs seized and the spasticity was overwhelming. If I rested for a while, my leg muscles would tighten up more making walking harder. I later found out this could be pseudo-exacerbation and/or a result of the muscles being weak due to the Baclofen.
It seemed some days are better then others and sometimes taking more Baclofen one day and less the next evens my muscles out a little better. When it worked, I felt more fluid when walking as if I was back on the 30mg a day. Other days I felt tighter as if I was off Baclofen. I also felt I could not stretch what I needed to stretch either because the spasticity acted up making walking very difficult for a day or I don’t feel a stretch and instead fell the pull on the tendons at the back of the knees. I tried to strengthen my muscles too, but that also results in my spasticity acting up making it difficult to walk after for a day. I had given up on those activities because I was getting no where and no one could offer suggestions. I had also tried stretching my legs while laying face down on a platform (bed or couch) with my legs hang over with the 10 lbs weights on. This seems to make my legs feel good after but no stretch and my tendons hurt (the pain making it difficult to walk after). When I went to physical therapy, no one there could really stretch out my legs, even the men. The only real stretch I got was when I would hang my heels off a ledge and very forcefully try and hold my legs straight with on hand. This was hard to do because either my hand and arm would get tired or I could not stand the intensity of the stretch when I got there making my muscles tense up more. After stretching this way my spasticity would be full force for about a day or so and my muscles could
I then consulted other doctors not knowing exactly what type of doctor I was looking for and none of the doctors I saw really knew what to do with me but kindly telling me to see this type of specialist and I ended up being handed to all kinds of specialists. I was told to seek out rehabilitation specialists but gave me no recommendations so I went through the Aetna directory to find some. All of the rehabilitation specialists told me they were not the right type of doctor I should see and did not know who I should see. I finally went to an orthopedic surgeon who suggested a neurologist. It never occurred to me to seek that type of specialist out. I went to a neurologist and she hooked me up with the UCSF Botox clinic.
I also had another physical therapist at the time who was a more in tune with my type of injury and she sent me to an orthopedic who tried to sound sincere telling me he was about to attend this big spinal cord injury conference and would like to see me when he got back, but to call his receptionist in 2 weeks for an appointment. I did what he suggested and got an appointment. He then examined me half-ass and talked me out of any type of corrective device he had access to.
When I went to the UCSF Botox clinic they were eager to hear my story and see if they could help. I got a initial doses of Botox in in both hamstrings (2 shots each) and that seemed to work great.
- The first month my walking was fluid and muscles were relaxed. I was able to lift toes effortlessly (maybe 1 out of 100 steps I would scuff a toe). The bottom of feet no longer hurt. Easier to walk down stairs (not having to lean backwards to keep my balance while putting a leg out over the step). It was very easy to stand for long periods of time.
- The Second month my posture seemed to get worse and it was starting to get less easy to stand for long periods of time.
- The third month I started feeling like the first month.
The next injection they injected more.
- First month was the same as the initial injection, but with unbeneficial side affects. Lots of unprovoked spasticity; every touch to below the waist caused a muscle fire (e.g. moving in the bed, bed sheets brushing on my legs, driving over small or big bumps in the road). I also could not empty my bladder fully at night and the early morning for a few weeks.
- Second month was the same as the initial injection, but with unbeneficial side affects. A little less spasticity but still more then the last Botox injection and different then the first month. Walking started to be less fluid because calves started tightening while walking. Morning yawning stretches caused clonus where before this hardly happened. Stretching was more difficult because I could not relax enough to get good stretches then before consistently and when stretching was painful and a sudden tightening of all muscles that were in pain causing more pain. But my bladder was able to empty as normal again WHOO HOO.
- Third month pretty much the same
I also noted that the hip area was feeling as if it was producing more spasticity then normal. When I would sit on a couch or in a desk chair, my hips would tighten making it painful and hard to get out of that position causing my back to arc more than usual and walked on my toes for about 30 steps.
I told the Botox center about this and even gave them a write up to look over, but being a clinic, I did not see the same doctor every time for the injection interview before they proceeded with the injections. They lowered the dose.
- First weekend after the injection I went walking at the farmers market and was not tired at all and no shortness of breath. I felt straighter standing taller. After walking at the farmers market the back top edges of my hips were in pain when bending at the waist either to grab something off the ground or bending to get up from a chair. This took about 2 weeks to normalize and I could not go to the gym.
- The following week I found that my leg was harder to straighten and took all my force and about 10 minutes to get them pliable enough to straighten. Once this happened, I ripped my muscle in my hamstring area. I continued to stretch for the next month with the same results. It was also very hard to stand because my crouch was worse because my hamstrings were tighter than before this injection.I believe the tone in my hamstrings was so high that it made it impossible to stretch.I could however stretch other muscles; inner thighs, calves, and the IT Band. I was off balance and used all surfaces to help me turn when I walked.
The next Botox injection was at the same dose with no real beneficial change other than the first week or two was great walking around with fluid movements.
I went to Europe for 2 week 3 months after the last injection. While I was in Europe, the Botox was wearing out. The things I noticed were less unprovoked spasticity and less clonus when I got back to the states. My hip area was less tight when getting off couches and desk chairs. My muscles became fluid for a month. My muscles are back to feeling like they were before the Botox initial injection; tight and heavy. When I lay on my stomach now, the back top of my hips hurt worse than ever.
The UCSF Botox clinic recommended I do not receive more injections to my hamstrings because of the above and since there is also a holdup in my hip flexors that makes walking worse if my legs are able to straighten more. The do not have the equipment to inject my hip flexors.
I have also tried CBD cannabinoid products which seemed to help when stretching out my muscles, but I could not tell if they helped in walking.
I am currently talking 80mg of Baclofen per day.
Now it is June 2014 and I am considering a Baclofen pump since the oral Baclofen seemed to stop working and the Botox had side affects I did not enjoy.
- I would like to know if I would have better success with a Baclofen pump since it is going right to my spine instead of using Baclofen orally?
- Will the Baclofen pump catheter be placed so it does not deliver to my bladder and bowels causing incontinence?
- Are there any models I should steer clear of?
- Will I be able to stretch my muscles as a normal person would to be able to lengthen them without feeling like it is futile?
I'm really nervous about sticking an object in my body that might not workout as all the above methods have.*
Thanks in advance for any information!