It reminded me of when I was in the hospital a few days after my coil. I knew that my cerebral fluid wasn't flowing right. I had a friend MT who came over and did some work on me, he is specialized in Cranial Sacral Therapy. Back to yesterday, I had the same pain that came out of no where. I took 200 mgs of Ibuprofin, a hot bath and rubbed some healing lotion to the area. Today feels better, but that pain was very uncomfortable. Has any one had this?
Hey Sandra,
You know after my coma/coil episode in 2006....I remember being in the hospital and my lower back started really acting up--badly. I didn't give it much thought and never connected it to the aneurysm/coil...So after I got home, lemme' tell you, I had the all time worse lower back pain i've ever experienced in my life. This didn't last a day or two, I'm talking a solid 6 months of this. It was not until this past year after reading posts on this site, that the two things (backpain and coil/annie) were ever brought to my attention as possibly being the 'culprit' of all my pain. I went to a Chriropractor, then physical therapy, then I started walking and riding my bike to stretch the muscles. It was horrible pain I can tell you that much ! finally, one day about 6 or 7 months out of the hospital, I was able to finally touch my toes once again! the pain finally went away, but not more then a month ago the same pain hit me out of no where for a whole day -- then went away as fast as it hit me.
My after-care of my coil was literally non-existant, and I had no clue what so ever that the lower back pain was or could possibly be from the aneuyrsm/coil/etc. (and even now, its never been 'diagnosed' as the reason for the back pain), the fact is, I assumed i'd hurt myself when I (literally) fell into the coma (onto hard terrazzo flooring).
I had a shunt for a coupla' months when I was in the coma, but its gone now as everything started 'working' again and I got the Docs to remove the shunt. DO you have a shunt now? This is very interesting to me, it opens up a chapter that i've never quite figured out for me ! Peace, Janet
Hi Janet, the reason I mentioned is because as a Massage Therapist and my training with Cranial Sacral, the Cerebral Fluid that runs from the top of the head all the way down out spine - sacrum needs to run like water hose, and when it doesn't, say theres a kink, it stops like when a hose gets a kink, the stagnation that's there, like in our case, due to our Annie, to me how can it not be effected? which is how the shunt is helping with. To get the fluids to filtrate, which in our case the shunts helps to move it around. But say our fluid for whatever reason, be it a shunt malfunctiones, than it will effect the lower spine(sacrum) at least that's how it was taught to us.
Have you ever heard of Cranial Sacral Therapy? if not look up Dr Upledgers site. it explains more in detail about how the cerebral fluid makes a big difference in our body. If it's not running smoothly what it can do the body. I hope I didn't confuse. Now as far as my back goes, pain is all gone. But I'll you, regulars doctors don't understand that type of treatment, it's in the alternative health.
Nice to know you don't have the shunt anymore, my doctor had mentioned that, that sometimes you don't need and it will sort itself out. But my question there is why did we need in the first place? From all read, when you have Hydrocephalis, NPH, that's there for ever. I have mine shunt, I bonded with it...but I tell you I'm due to see my new Neurosurgeon, I see him on Wed. I can feel that something is not quite right, since moving here to Ohio. Falling unto a hard floor as you did, can cause allot of back pain, I know my daughter in law had a ruptured disk from falling on her butt playing basketball.
Were you diagnosed with Hydrocephalis after your Annie? I have been, and carry the card in my wallet stating that I have NPH. To me, it's like getting heart stent, how many people actualy get it taken out? not many. How happy I would be if could get to that point, but I seriously doubt it. It's helped to prolong my life is how I see it. Nice writing to you, thanks for you info. God Bless.
Hey Sandra,
Thank YOU for the information you bestowed on ME! No, i had never heard of Cranial Sacral , but it makes worlds of sense the way you explained it. I beleive (can't honestly say for certain as I was comatose at the time), that I had hydrocephalas after my annie burst and I was in the hospital..I awoke with the shunt, I left the hospital with the shunt..than the shunt got infecteout d after 2 weeks of being home and the infection put me back in the hospital for another 3 weeks....they couldn't get rid of the infection with antibiotics, and finally had to disconnect the drain into my stomach and let it drain in a bag (on a pole, next to my hospital bed)...finally the severe knives in the gut feeling went away, than within a few days the bag ceased filling up. That was the moment when it was realized that hey, my body must be doing its job again of recirculating the spinal fluid on its own. I was very excited about this, and if memory serves me correctly, I just assumed that the shunt could/should be removed as I didn't need it any longer and I pretty well insisted that the doctors remove it. Surprisingly, they removed it ! I never even gave it a 2nd thought that it couldn't/should'nt have been done at the time, I didn't think about the fact that as time wore on the shunt would situate itself and tissue would grow around it-(-I think back to that time and I wonder if my doctor thought about that aspect)--The shunt removal left a rather huge U-shaped scar on my head, bigger then either craniotomy scars that i've got, but for me I'm glad its gone (Mine had been placed so haphazardly and looked horrendous, it was very much 'there' in the forefront)!
I hope your Neuro appt. goes well, maybe your shunt needs adjusting after the airport scanner situation? Let us know !
Hi Janet, so glad to hear that you enjoyed the info, and that it helps you if you should ever need it. My visit went realy well with him, I realy liked him, of course not too much was able to get done until I see him with new films that were taken today. They never mentioned me bringing my old films, today, my Mra, Xray with me today, but I did have my 50 or so medical records. I did get squeezed in for a Cat Scan and x-ray though, so we shall see what if anything has changed. Feeling pretty good today, but we will have days like this, isn't that a song? I loved the team over there, Ohio is so laid back, compare to AZ where we moved from. Funny, the first thing Dr said to me when he walked in was..."you realized you came from the best area and doctors" He was referring to Barrows Neurological Center, where It was my home for 21 days.
Now as for the shunt, mine is The Codman Hakim programmable shunt, it's Titanium, and it also made so that you don't get any infection once it's placed. I believe the latest," Cream de-la Crem" of shunts. My old doc said that, sometimes, not everyone,but like yourself, the body will go on it's own, and the shunt will just stop functioning, he mentioned, if that was to happen with me, he wouldn't want to remove it, that is because it's already in place, and if it was to come back, which as you know, the probality are pretty high in us getting another Annie, thus why any little change we feel, we call and have it evaluated. I don't mind mine, it's a great conversation peace, but what I love most of all is give people the hope that they don't have to die from this if caught on time..when I returned to my business back in Az after the annie, I talked about it with so many of my clients, and they were so happy that one can survived, and be not incompasitated from it...with me about the only thing I realy had was a frozen shoulder, and of course the Hydrocephalis, or NPH. I had speech therapy for a short time, PT to get my strength completely back. Out of the hospital 3/8, and driving to Vegas for a convention on 6/22. I drove with a buddy both ways. Not bad. But am I the same since all this happened, no...I was such a multi-tasker before, now, not as much. I'm not even sure if I realy want to get back to running a business as I did before. But I still want to work, but slow. How about yourself? did you go back to work? So glad though your brain is not needing the shunt anymore. Awsome! Stay in touch and God Bless.
I have this also and it's so bad I need wheelchair, as I am in UK what or whom do I ask to see about back after coil fitted, I can walk approx. 60 yards then back goes.
I had acupuncture it helped a little
Here they just say it will go but I have had pain in back since 2010
Regards
Bess2U x
Hi Bess,
Where are you in UK, my oldest son and wife and 2 grandboys live out there. They are both in the Airforce. I'm planning on going out there in the Spring. Anyway, just wanted to share that. As for the back, I've only felt that pain 2x, first time was in the hospital after my annie. When I met with my new Neuro here in Ohio on Tues, I mentioned to him, and he said, it's common to feel that off and on...his thoughts were that with the Cebreal flow, I guess we accumulate as he put it, gunk in that area, the nerve fibers are effected... we will discuss further in my next visit. I'm going to do more research with this myself. Good luck to you, have you told your story here yet?
God Bless.
Hi Sandra,
I am in Kent, originally London, are they near Mildenhall, as hubby had to fit a/c in airbase near there. Is your neuro good ? I don't know when pain started as I was so out of it. So thanks for reply I'll see my Doc again. I'll find how to do story and will have a go.
Many thanks and wish me luck lol
Bess2U xx
Hello again, They are in Alconbery I believe. I haven't been there as of yet because of my annie, but planning on it next year. Regarding my Neuro, so far so good, but will realy know him when I get another consult in 2 weeks. So far I am. Well you stay healthy and have a wonderful weekend.
Cheers!
Likewise Sandra, have a good one and rest. Alconbery is nr Cambs never been there.
Cheers
Bess2U
I had extreme lower back pain and sacral swelling after my SAH. I was also given no aftercare or information that this was related to the bleed. Thankfully it cleared up on its own after about a month of hardly being able to walk and does not really seem to bother me now. Hoping it will stay that way.
JS,
Glad yours has cleared up I wish mine would, but mustn't complain as still here, so we must keep going onwards and upwards. I never had much aftercare also but we will get there one day.
Be Well.
Bess2U
Hi Bess!
I'm so sorry to hear of your lower back pain, my God I know that the 6 months I had it, I was a wreck--it controlled my life for that 6 months! has yours gotten any better at all ? are you able to do stretching exersizes or anything like that, and if so, does it help at all?
Peace, Janet
J, a whole month? that's a long time. I talked to my Neuro about this the other day, and he told me that more than likely it's the never fibers and getting caked from all that was flowing around from the Annie. Best he was able to explain to me. Glad your pain went away.
Hi Sandra! I had great success visiting an SOT (Sacro Occipital Technique) therapist following my surgery, and still see her for follow ups. From being still for so long in the hospital, and being on flexoril while at Hopkins, everything got terribly out of whack. Not sure of your story, but if you had anything placed, they also put your head into a device so that it doesn't move during surgery -- really threw my neck out of whack badly. So yeah, SOT worked for me, as did a huge cleanse following all those nasty drugs I was on.
Hi Tara,
Thanks for the info, I'm going to look into it, My story is on another site of mine. If you can look me up by name or state of AZ, you will see me there. But yes I did have things done to my head, 1st was a coil than a shunt which I still have. I didn't think of them placing the head in a device. But makes sense. I feel that all we go through, I'm wondering if we could also suffer from PTO, Post Traumatic Stress. I'm feeling better, but waiting on my neurosurgeon to go over new test, se if my shunt needs any adjustments. Tara, stay well and stay in-touch. God Bless.
Sandra
I have done a few movements but I am in a catch 22 situation, stand and do the twist (my excersise) and bend etc. then my back aches, so going to try every shower time and lean over the chair. Hot water helps my back.
If any of you get an eclipse of sun/moon blame me. ha
Love to All of us.
Bess2U x
Hi Janet,
My Doc is a bit useless sorry to say, he forgot the hospital passed me over to him for care !! so I reminded him again.
I took 72 steps my best ever yay! but after I had real bad back ache. (I was
showing off.)
Still cannot put socks on but getting there and it's good to hear that others had bad back and have come through it.
Keep up the good fight and always smile no matter what comes our way xx
Love to All
Bess2u xx
Point well made and taken. Take care and hope you feel better soon.
Sandra...I just read all of your story....At your initial time my computer was in for repair...and, my old laptop was too dilapitated...When I finally got back on-line I had to re-learn everything...tho I did buy another laptop too...that almost a year later...I have not yet learned for my back-up system!... it will probably be obsolete before I need it...
I am so happy this was brought forward again...I am such a believer in craniosacral, acupuncture, activator (light touch) chiropractic, and, vision therapy...
Thanks...