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Old 05-27-2009, 08:53 PM   #1
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not unfeeling just not feeling

I haven't posted here for awhile as it looks as though most with the problems I am having get surgery and it has been interesting reading, but disturbing as my symptoms worsen. At least I get to experience what it's like to go slowly and painfully paralyzed. It seems like the cspine and S nerves are 'neck in neck', if you get what I mean. It's hard to keep my mind focused on other things so I don't panic or get fed up. I haven't seen anyone posting with problems like mine who don't get surgery, but maybe they all live in Canada and are quads by now, waiting for the 'right time' for surgery. One minor car accident and I would be toast.

The pain/nerve specialist must have some reason for bumping my 3-6 mth. wait for MRI to next month, thankfully. He sees a need to test me for Addison's. I've looked into this and it just looks like the symptoms may be similar to spinal cord problems. I don't know.

I have lost feeling in most body parts now and I find it amazing that although very stiff (like I need oiling), clumzy and numb, my hands and feet etc. are still working and only once in awhile do the fingers take a few extra seconds. Their favorite position is curled up. Others on this board have posted loss of use of vital body parts before surgery, so I should be more thankful. But the last few days, my hands feel like they are past numb and now asleep; no circulation-type feeling. Like I ate a pound of salt and they are huge, puffy and swollen; but they are not and appear normal. Anyone familiar as to what this could be?

The barometric pressure is see -sawing and the pain was shooting through my neck/throat and skull like lightening last night and I thought I was going to pass out. I have become slow in the brain as well. Sometimes I wonder if I am going into some kind of shock and confusion from all the pain. I have too many other health problems to be able to endure pain med. side effects. I've tried. I also don't want some dr. telling me that anything I've got is from medication so that excuse is eliminated.

Is there anyone else who has advanced cspine, lumbar (mod cord compression), and general spinal arthritis who feels their whole body is going dead but they can still move everything although slow? I have already been to the 'best' neuro in the region so that is not an option until I get that MRI next month. I have been losing my sense of taste off and on lately but it comes back in minutes or an hour.

I guess I've said enough for now to make up for not posting lately. Going to take my 'blue' hands and feet outta here for now.

Will be thinking about you next week (?) Jenny and hoping you make out fine.

fed up tonight but thanks for listening,
choc

 
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Old 05-28-2009, 01:08 AM   #2
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Re: not unfeeling just not feeling

Hey Trychocolate,

I'm so sorry that you're going through this. I haven't got anywhere near the physical symptoms you have but with my C spine (I've just had a fusion) my left hand wouldn't work properly - was numb and I drop things often. The messages to that hand were also slow. The numbness and weakness is still there but it has only been a week post surgery. I have found that the signals seem to be getting through faster though. When are you having your MRI? Do you have a date? It sounds like your problems are pretty serious and need to be attended to asap. I didn't quite understand in your post if you were pro having surgery? If your problems are caused by your spine it may be the only way to halt or reverse the symptoms. I have had weakness for the past 2 years that's been steadily getting worse and was told that I will likely only get some of the strength and none of the feeling back because I waited too long for surgery. I wish I had it done earlier but I had other health problems going on that needed to be addressed first.

I wish you the best of luck, you need some hope and something to keep you going. Please post when you can, we'll always be here for you. Take care. J.

 
Old 05-28-2009, 05:41 AM   #3
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Re: not unfeeling just not feeling

I dont have all the symptoms you have either but do have the DDD, Cspine issues & lumbar. So I can to an extent understand.
I am 5mths. post op from fusion on c5-6, still have the weakness in the hands. Although have carpal tunnal in the right one. My left one still can feel weak & it aches in the morning like crazy.
I get that numbness in the right hand, cant feel anything at times, so I know its nerve related. I never experianced the blue color but did have some swelling my my fingers when it was really bad. I can see why you want to know whats causing this.

As for the lower extremities, I just kind of shuffle & limp every morning & when getting up from sitting positions. Makes me feel like I am 100 yrs old. Very stiff. Knee wont bend right at times or just wants to give out, cant lift my legs enough to take normal steps & so on....it all just aches. Alot of pressure in the low back.

Due to the C problems being let go I have others now to deal with & like Jenx wish I could have had this surgery alot sooner. Although many of my symptoms & pain has improved in area since the fusion there are some left to deal with, I remain optimistic & know that yrs of problems are not going to go away overnight & some may never.
The weather is a bugger to deal with & I for one can verify it definantly effects pain levels & how well you body functions on certain days.
Dealing with both areas C & L can be frustrating. As my Lumbar issues wont be dealt for now due to the cervical.
Really think you need that MRI & happy your getting it. At the very least you will not be left to wonder whats going on in there. Not knowing it hard to deal with. I am truely sorry you are suffering so. Please keep us posted on how your doing & of course what your MRI reveals. God bless, Sammy

 
Old 05-28-2009, 08:14 AM   #4
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Re: not unfeeling just not feeling

i am assuming that at some point at least, you DID have an actual MRI done if you know you have cord compression? how long ago was that and how was it described back then? you just really DO sound from all your symptoms that whatever was compromising your actual cord has become much worse over time. i can see why that MRI was moved up given what you just described here.

exactly when are you going to be having the new MRI? make certain they use a contrasting agent to really get the best clarity and to highlight certain types of findings that just do not show really well without it too. the mere fact that your fingers are actually curing shows that your fine motor functions are being compromised as well. this can occur at certain levels up there but my particular fine motor was damaged right inside the actual cord area itself. you just have some rather ominous sounding symptomsthat really DO need to be tracked back to their cause as soon as possible.

i would be very very careful in everything you do right now that involves head turning or up and down movements til you at least get an idea of how bad that cord compromise is. i would also be keeping track of any and all symptoms in some type of little notebook or journal. anything that you have right now thats going on, and anything that suddenly changes on you or is new or actually goes away. it WILL help your NS tons in really seeing what is being affected and where. not everything that is wrong will always actually show itself on any type of scan(it is never an actual picture of how an area is,but only a scan of one), so alot depends upon your actual symptoms too when really trying to identify just what is or could be being adffected when it comes to anything spinal related. even seemingly insignificant types of symptoms, perceptions, sensations and or changes can mean much bigger things in this type of situation,so it should ALL be noted. hopefully you can get that MRI done asap. please keep us posted. good luck Marcia



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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 05-28-2009, 03:41 PM   #5
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Re: not unfeeling just not feeling

Thank you Jemax, sammyo1 and feelbad for your replies. Your expectations are reasonable and realistic and you live with the rest.

The 07 MRI results are posted under 'cervical spine deterioration' dated 02-15-09 at 10:14 am. Dr. comments 02-13-09 at 12:08. Old MRI from 05 has findings as well that I didn't post, which is when the natural stenosis and reverse lordosis was noted. Next MRI is June 18. The replies I got in Feb. helped me to understand things so much better. Even Jenny offered up a dr. in Calgary which seemed tempting but the neuro I went to in this area is highly respected and considered an excellent surgeon. So once you've been to him, that's it, and more referrals will send you to dr.'s who will see his name on my file, and will most likely not want to override his decision. Healthcare here is on a critical care basis, if that. My situation is only dangerous and surgery is not an option until critical, and even then, chances are not good. I can get referred to the States but the expenses would be astronomical, and if there were complications and I came back and needed help... Don't ask about why we pay provincial insurance and additional insurance; it won't get you anywhere under this system and it continues to worsen, with patients who need hips, knees,etc. without hope for many months or years as it is now considered 'unnecessary'. The nerve and muscle dr. seemed really informed and helpful, and stated there are literally no orthopedic surgeons for referral right now, and that he himself is relocating. Figures. It must be frustrating to be a dr. here. There are private clinics popping up here and there so a transition is happening.

I asked about MRI with contrast and family dr. said they only do that if there is suspicion of tumor and that is all it's good for, and there are risks associated with it. End of discussion.

I have extensive tissue damage also around cord (myolen sheath?) but not sure about cord itself, like feelbad. As stated to me 6 years ago, I have the neck of a 90 year old; that's how you end up when you have a sore neck all your life and the added destruction of on-going inflammation. Disks are dessicated and from what I have read on posts, being herniated would cause more disability. The herniated people have my sympathies.

So the hands are not literally blue (sorry for that description), just feel that way, and are functioning quite well, mostly. On testing, I couldn't feel the difference between a pin ***** and dull object on fingers. It's been too long (at least one year), so it's most likely permanent. I don't know what my hands and limbs are doing unless I watch them so no awareness of space and placement. Can't grip tightly and usually drop objects before placing them. I asked about the hands because I got worried that I'll lose them altogether with this feeling. Am feeling very jittery at times and even more numb when I lay down. Maybe this will be good for MRI. At least the shocks I used to get cleared up. I would like to be able to tell if other symptoms are Cauda Equina, or cspine or both but just have to sit on that one. No pun.

These symptoms seem shocking to post and to read others, but not to the dr.

I hope I covered points you have raised and I apologize if I missed something. The journal is an excellent idea and I wished I would have kept one going the past few years. Time to start.

I wish all of you well and hope you realize how much help you have been to this board and to me. I appreciate your support and just have to get through this and keep going. It could be worse. I've read it here.

choc

 
Old 05-28-2009, 04:51 PM   #6
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Re: not unfeeling just not feeling

Hi Choc....thanks for thinking of me. Yes, it's Wednesday and I can't wait. I just hope he finds what everyone thinks he'll find or I'm off to a neurologist with a major brain disorder!

Yeah, the pressure on the cord can cause all sorts of weird stuff including that falling asleep problem and the feeling of giant hands. First time around I was affected all over. Second time was a total nightmare of pain and slow paralysis all over(I felt like Igor in the Frankenstein movie, dragging my right leg behind me). This third time is mostly on the left. I've fallen twice because my left side couldn't keep up with the right. I no longer carry anything in my left hand except the cat(arm really). I need the right hand to hold the railing to get down the stairs to the house. And I've even gone slightly numb "down there" in the sexual area. The left side doesn't feel much nor react. Kills one's sex life although the periodic incontinency killed that already.

And the headaches! Whatever is compressing the cord also causes the spinal fluid to not circulate properly and can cause a build up in the brain or in the spine. Your problems with taste concern me. Glad the doc is checking you out for Addisons. It might be part of the problem as well. And yes, I get a great deal of brain fuzz...part pain, part excessive fluid.

So I either have cord compression on the left side of my cord or I'm going numb on the left side of the body and very few neurologic diseases do that. That's why everyone thinks it's the neck.

I'm so tired of spending most of my days lying down with my neck in a specific position. I'm now on muscle relaxants everyday. I have to drive 5 hours next week to get to and from the doc and I can just see me on Valium and Dilaudid driving back. I'll make it up with there with minimal meds but coming home will be very different.

I'm glad you got the MRI moved up...when? I get mine a half hour before my appointment next Wed. Neurosurgeon will be able to see the scans as they are done so he can order more if necessary. Wish you could take my place, kiddo.

Glad to see you back here. PM me if you want. Slow paralysis is the pits. You never know what will work. But there is one up side. I've had my knees replaced and kneeling has been horribly painful. With both of my falls I was able to roll over and kneel on my left knee with almost no pain. Small blessings. But I wouldn't have fallen had my left side kept up with the right!

Take care and keep me informed.

gentle hugs and prayers for less pain.............Jenny

 
Old 05-28-2009, 05:32 PM   #7
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Re: not unfeeling just not feeling

trychocolate - so sorry you are struggling. It seems the fight never ends. I hope with the move up of the MRI you can get some progress going. It is truly furstrating to live in a body that won't cooperate! It is an excellent idea to journal, every time I feel like I am not communicating well with my team of doctors, I bring in my journal, we itemize what's going on and it helps them get focused. After we go a round like that they usually are able to help me more. I feel bad for you but I am glad you took the time to post how you are doing and feeling. Sometimes it is good to get a load off your mind and share with people who really understand. I find I feel a little "de-stressed" after I talk with someone who has similar problems. It is so important for you to take good care of yourself.

I've been going stir crazy - been down for 5 days from my lumbar - just when I had gotten my L5/S1 herniation to calm down and my leg functioning again I re-herniated it getting up from the floor getting something from a drawer.I think I irritated my cord again because my thoracic herniations are acting up too out of the blue. All from something stupid like getting up. My bladder is also acting up today, but nothing worse than our discussions before. Lumbar injections in a week and a half. Weather here is starting to act up for rainy season and I am feeling it in my cervical. I still make jokes the hardware is a barometer they really put in all of us.

Every time I get any glimmer of good it seems I get slapped down with a reminder. Do you ever feel like that??????

Take care,
NP

 
Old 05-28-2009, 08:00 PM   #8
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Re: not unfeeling just not feeling

oh neckpatient... you're getting a load too. Sounds like you could have used 'the claw' instead of bending down. One move and bang; it's maddening and too painful. I am sorry that you are in so much pain. I hope it doesn't take forever to get relief.

I take a turn for the worse every year this time. Just when the weather is lifting and warming, it seems like my symptoms get worse and then stay for more the next year. So the barometric changes must cause some permanent damage, causing some kind of internal pressure in our damaged joints and the slightest move sets it off. I almost made a dr. appointment for the hands because if the arthritis in the foraminal areas actually caused an arterial problem...but I figure such a thing would be rare and it should surely show visibly.

I guess I figure if they don't see anything on that MRI on the 18th, I am really going to be confused and feel hopeless. You see, unlike jenny, who has a neuro reading her MRI before her surgery, they get the janitor to read mine, then if he sees anything, he will probably phone the tech, who in turn will text message the phone service. Okay so I'm kidding, hopefully. Seriously, only techs read it which is a big mistake for those of us with huge complaints. Get what I mean when I say that expressing symptoms seem meaningless?

choc

 
Old 05-29-2009, 07:32 AM   #9
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Re: not unfeeling just not feeling

just one biggie here that i wanted to point out to you? the inability to actually know where your own body parts are in relation to space is an actual "function" in the cerebellum in the brain and the spinocerebellar tract within your cord too. i lost this with my legs post cord surgery. this really does need to be evaluated just by that MRI as to just how much real compression is possibly ON that tract and where it is located. i know some tracts have a multiple locations such as the spinothalamic that has an anterior location and a left lateral one too. this became damaed in my cord too with alot of fallout. i am just wondering if the cerebellar has more than one here too or your compresion would appear to have to be much more left lateral, however it is configured in there to at least a certain degree, just for this inability to even be there at all, ya know what i mean? i certainly hope you can obtain that MRI soon hon. and by the way,contrast does NOT only highlight tumors, so whoever told you that really needs to do some reading on it. hang in there choc, please keep us updated, Marcia
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3-22-01,herniated C-6-7
11-20-01,placement of hardware for failed fusion
9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

 
Old 05-29-2009, 01:39 PM   #10
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Re: not unfeeling just not feeling

Chocolate...thanks for the PM. Gave a laugh. My incontinence is during sex....not good!!!!!!!!!!! But remind me not to squat!

DEMAND to get a copy of your films when they do the MRI even if they make you pay for them(or a copy of the CD whichever way they do it). That way you take them with you to the doc or a second opinion or even if you come to visit a friend in the US who happens to know a good neurosurgeon. There are those here who can probably read an MRI just as good as the radiologists. And there are places like the Cleveland Clinic that you can send your MRI to and they will read it and give their advice as to what to do. I think the Hospital for Special Surgery in NYC does that too. It's a subtle way to put the screws to your doc in Canada that you want the best care.

When my brother(in Kelowna, BC) was going down hill, I told him to come visit and have a bad bout of chest pain and the Canadian government would have to pay for any emergency care and he could get himself fixed up here. Didn't happen but he did go to an ER while in the States on business and they changed all his meds around and it was a huge help. After that he always managed to mention his trip and the good docs in the US and his BC docs all of sudden treated him better.

I was still living in Montreal when socialized medicine went through in Quebec and as nice as it was for us patients, it was a big de-moralizer for the docs. They got so overwhelmed with patients so quickly, they couldn't do their best. It seems to be worse now than then. Perhaps the biggest problem with socialized medicine is the morale of the docs. It was devised to help more people but it has ended up making the MD's so overworked they no longer can care as much or do as much so you end up having to push them to do what they should. It's sad and I hope whatever they come up with here is somehow different.

Hang in there............Jenny

 
Old 05-29-2009, 03:19 PM   #11
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Re: not unfeeling just not feeling

Thank you both for your replies. feelbad, I may not totally understand all that you are referring to, however, I am gathering that this spatial thing is somewhat serious; it started quite awhile ago. I was under the impression at the time of the MRI in '05 that the problems were far more serious on the left, even though 100% of the pain and pinched nerves were felt on the right. And that when I started to feel things on the left, could be a problem. Maybe this is what you explained.

I wish the dr. would just include the brain to make sure that is not in the equation. It's like pulling teeth to get what I do get. I paid for a brain MRI before and only showed ischemia top left side.

Glad to make you laugh, Jenny. I would have posted some of it but when I saw I got the swear stars for the description of finger/hand testing, I didn't want to push it. I am going to try for the MRI copy. Exellent idea to take it to the States when I can. A friend told me he demanded to view his right after his brain MRI (he has MS) and they let him. I want to at least get that much. It will probably be close to 10:00 pm when mine is done, so maybe they will have a jolly and cooperative night shift on. Should I offer them Slurpees?

This reminds me of a couple of serious medical incidences when I was growing up and dr's would be appearing to be negligent. My mom would threaten them with whatever she felt would work, and it would usually speed things up. Then, when she was really sick and appearing to be experiencing the same kind of ignorance, I took one look at her (lived out of town and flew in), and reamed out her dr. for not doing anything. He got to it the next morning. She died 13 months later at 59of cancer. My point is, if you think I am not being very aggressive here, it's because I am taking great pains to control myself; I give it some time to make sure it's not purely emotional. That it is truly serious. When I read the experiences on this board, it holds me back. No matter what I say to the dr, nothing seems to work, especially patience. I don't want things on my medical file I will regret. I wish I knew what type of threat would work and achieve some satisfaction under this system.

Thanks all and will keep you posted. You too.

choc

 
Old 05-29-2009, 07:24 PM   #12
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Re: not unfeeling just not feeling

Slurpees, huh. I was going to take some chocolate dipped strawberries to the office staff next week because I've bugged them so much. But Slurpees would be easier! Bribing the staff is ALWAYS good.

And I don't push the docs...just intimidate with better docs than they are. But you must be subtle(heaven forbid we should bruise their delicate egos). Definitely look into the Cleveland Clinic as I know they will do it by mail.

If you were out near the Calgary area I know a great neurologist who would do a really great job for you. Mine from Boston moved to Calgary when her hubby took over a big research post at the university. God, I miss her. Maybe I need to go visit my brother.

As far as the spatial stuff, that can also be caused by other stuff. When my knees were replaced my neurologist told me it's was the telomeres in my tendons that had become trained to do things like steps a certain way and I had to retrain them. Same came after the neck surgeries. PT did a good job with that.

Keep hanging in there.....June is around the corner.

Jenny

 
Old 05-30-2009, 05:54 AM   #13
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Re: not unfeeling just not feeling

Thanks again jenny; I checked out Cleveland clinic on web (must be only one, right?). And if you could give me the dr. name in Calgary, that would be great. I would have to find out if they need my 30 page report or if MRI would suffice. I should talk to dr about this beforehan without letting on that I have little faith in what they might miss?

Let me know if you are running some 'effective dr ettiquette' classes as I will attend online!

Anyone too please: don't know if I can use drug name, but don't know much about this. Nerve and muscle dr half-heartedly recommended Cymbalta for this particulr pain. I'm more concerned about the other symptoms but would this help all that? I just don't see impingements etc. being helped that way. Then those side-effects again...

Thank you and hope you are having an excellent morning,
choc

 
Old 05-30-2009, 05:04 PM   #14
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Re: not unfeeling just not feeling

Hey Choc.....glad to see you checking things out. My doc in the Calgary area is a neurologist, not a neurosurgeon but she is great. I have absolutely no idea where her office is only that she and hubby are living just west of the city. Her name is Dr. Dawn Pearson. She is just too cool. On her office wall she had all her medical degrees and stuff all framed in basic black. Then in the middle was this large colorful diploma framed in red...it's her kindergarten diploma. the one she loves the most. Rare to find a doc who credits her love of the sandbox to be equivalent to her med school degree. If you get her address, send it to me. I haven't been able to find it. And make sure to tell her that Jenny from Connecticut sent you(the one that makes gingerbread houses)!

As for Cymbalta, I just came off of it(long story). It was a tremendous help after the second neck surgery. It's advertised for depression but also approved for anxiety, fibromyalgia pain and peripheral neuropathy. Bottom line is, it works better for nerve pain that depression or anxiety. In fact, it causes anxiety during the lower dose stage. But once it kicks in(and you will feel the kick)it really affects the nerve pain. I will definitely go back on it after the next surgery(if there is one).

I also did a little checking on the spatial thing, not know where your body is in space. It can come from the brain, the cord or the individual limbs. Common with high cord compression.

I've been experiencing something I can't find anything about and I wonder if you get this too. When I lie down to nap or go to bed I often wake up with all my muscles quivering, very fine quivering, especially in my upper body but I can feel it all the way to the toes. If I bend my neck forward as far as I can, it slowly goes away. It's from my head going too far backwards while sleeping.

Can't wait for Wednesday. I'm starting to trip over drafts of air.

big hugs............Jenny

 
Old 05-30-2009, 08:28 PM   #15
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Re: not unfeeling just not feeling

It's interesting how some dr's seem to remain relatively obscure from the net. The only thing I could find, if current, on Dr. Pearson was possibly working out of the Rockyview General, that's it. I grew up in Calgary, really liked the city and knew that hospital well. She sounds like a really nice person, which is a good starting point!

I get flutters in hands and feet only during the day; it feels like they are moving but I don't think they are. The body is vibrating, felt mostly in legs. I think this is what you are talking about. Your spaces must be getting pretty narrow in there if you notice a difference bowing head. I have to keep mine that way all the time for less pain and pulling, plus I'll get a nasty ice-cream headache if I look up for more than a few seconds. Do you notice weird things when you position your head differently while laying on your back? Like a certain tilt back will cause your whole body to almost feel even more numb or more relaxed? But maybe you have to keep yours pretty straight by now. I am also curious as to whether you can actually sit in a normal chair that has a back and arms or if this next to impossible for more than 10 or 20 minutes for you as well. This includes writhing, leaning, and resting on your wrists for that time.

I am picturing that 5 hour ride you have to take and what kind of even nastier shape you must be in by the time you get there. We're going to miss you here for a couple of days for sure too.

choc

 
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