Mylegram...Have to have one this Monday. Any advice?

D

deaththekid

New member
I have had 3 back surgeries and am due to have my first mylegram this Monday. Is there anyone out there who could fill me in on what to expect. I`m actually dreading this more than the surgeries
 
I had one done about 6 months ago. It's not too bad. I didn't take any pain meds before and they didn't give me anything at the hospital. There is alot of pressure and some pain but compaired to back surgery, it was a walk in the park. I was talking to the doctor and when he injected the dye, I lost all train of thought. I couldn't put two words together, but that passed quickly. Be sure you stay in bed after the test. Keep your head on a pillow or two so you don't get a bad headache.
Good luck
 
Thanks Cherrie65! I`ve heard horror stories. You make me feel alot better. I have to get SI joint injections about every three months, which aren`t too pleasant so I think I can deal with this.I`ll let you know how I do. What type back surgery did you have?
 
I had a laminectomy and diskectomy in 2002 and 2004. Those were simple compaired to now. I have DDD, DJD and stenosis. I saw my doctor yesterday and he looked at my new MRI and said my only option is fusion. We have tried everything else. epidural injections and facet joint injections. I am going to have a selective nerve block to see if it will lesson the pain until I decide to have the fusion. I can't wait too long because my husband is in the army and set to re-deploy to the sandbox around this time next year.
Let me know how you are doing.
Cherrie
 
hpl? i am wondering if anyone has done more in depth testing on you to really find the true generator of the 21 year long headpain(even just checking CSF pressure)? that really IS a very odd reaction to say the least. if they have not fully explored ALL and EVERY possible reason for this, it really IS needed. i would have to say that your particular reaction and ongoing head pain would not be the norm with this type of test at all. while some headpain can occur with this, it is generally gone within even a day or two or maybe a week at the outside? getting contrasted MRIs done on your brain and the spinal areas may just show the real underlying reason. this just does not sound "right" at all to me. or 'normal' side effect from a myelo either.

just what specific area was that myelo done at and what were the findings? just trying to really point you in another direction here for the possible 'culprit" that is truely behind what must be ongoing agony for you to have to have dealt with for sooo long. did they even use or have the flouro guided imaging back then just to really know where they were sticking needles? that too could have played a big part in this too. proper needle placement with this type of testing IS crucial.

just EXACTLY what does that headpain feel like to you and where is it actually located within your head? has ANYTHING that you have actually tried for this over the many years ever really helped you at all in any way?

i just really think this could be stemming from either very definitive types of damage there(could even have been casued by a very unexperienced type doc too) or there is actually some other level of real true involvment. espescially if there were no follow ups done on you to try and narrow down this headpain to more specific areas. just what were your actual pre myelo symptoms if you can rememeber? what prompted this test in the first place? was any surgery done on you after this? just some questions that would help me to really help you right now in the very best ways. believe me,as i lifelong migrane sufferer i really do feel for you with this situation, ANY true headpain just sucks much more than in any other area of our bodies. the head is just soo heavily innervated and highly vascular in nature. any real solid info you can provide really would help. FB
 
I do not know where to start...Yes I have had follow up work done .. I was checked for any spinal fluid leak. That was done at University of Michigan.They did a upper lumbar myleogram.no fluid leak was detected. I have also have had 2 blood patches. It all started from when I worked at a stamping plant where I developed a pain in my shoulder that would not go away..I was told to go for a myleogram ,This was back in 1988.. I have been told by many of people that a shoulder problem does not warrent a myleogram... Here is what happened on that day 10/10/88 .My myleogram was to be done in the morning and I was to be there an hour before it was to be done so they can give me some Vallium.. As I taking the Vallium someone walked in and said the Doctor is ready for him now..The nurse or lady said he is just now taking the vallium.. They replied Well he is ready now. By the way the Doctor was a well respected Nerosurgen{sp} Dr.Robert Ho. Well needless to say that when that first needle was stuck in my lower back ,I felt every bit of it,I immediatly about jumped off the table/bed.. I know that was the the moment that caused this HEADPAIN that I have had every minute of my life for 21 years..What else can I tell you, The pain is there all the time it is agravated by many things noise ,smells, foods, sun, cold, bending, sleeping wrong,and by that I mean I have to lay flat on my back with no pillow,I have tried many,many ,many Meds..I can not use meds that will effect my heart. I had a heart attack in 1993 at the age of 35.. I dont know for sure but I think the heart attack was caused my all the different medication that was perscribed for the headpain.. If you can be any help in any way I would truley appreciate it.. I was also going to to M.H.N.I. Michigan Headpain and Neurolocical Institue with Dr.Joel Saper..I can not afford to still see them.But I did see them for a number of years.
 
I`m quite ignorant to the medical lingo for what my surgeries were. I had my first in 2005 where @L5 & L4 got a rod on each side with a total of 8 screws plus disc was worked on. In spring of 2006, one of my screws loosened ( the others went lost a long time ago LOL...just kidding) So the doc went back in to replace the screw and decided that I needed another set of rods.This time he skipped a vertebrae and went from L4 to L2. Well.late into 2007 my pain and bending worsened; he went in and removed my top left rod in February 2008 and I`ve been worse than ever. I`m now seeing a neuroligist who is well known.In fact you may know of him because he treats many war vets and was on Oprah. Dr Poffenbarger has impressed me with his compassion and will explain every detail with you. He`s the one whom ordered the myleogram. I`m sorry I`ve rambled on so much. Thank you and your husband for his service in the Army. I`m an Army brat so I know the sacrifices his service entails. May God watch over you and your family!
 
It went great! I basically worried myself sick over nothing. I never felt the needle going in. I did start to get the beginning of a migrane in the recovery room which never feastered into a fullblown migrane. Other than that I didn't have any major discomfort.(other than going stir-crazy over just laying around!) Propped up the head, drank 2 1/2 liters of Pepsi (lots of fluids and caffeine is what they recommended) & watched old movies. Was back in work today with no difficulty. Now I have to wait until the 27th to talk to the doctor. Thanks for giving me more faith!
 
i do very much agree that having shoulder pain is not an indicaton to even go to the spine at all really, and to actually perform a myellogram too is realy insane to say the least. they should have numbed the area with some level of 'caine" like lidocaine first(at least at the outside)? all the valium does is merely attempt to relax you and not really "do" anything for the actual pain involved.

have you hadfany MRIs at that area at all? have they done MRI at the c spine level as well? depending upon what even could have been hit or even damaged when you "jumped' with that needle stick also could be an underlying factor here. if you have indeed had MRI at that myelo site, they can do a much more in depth type of scan called a 3 T or 3 tesla scan? this simply uses three times the actual magnetism of the standard MRI. it just wayy more in depth than any real MRI can possibly be, even if a contrasting agent is used too. i had to have one of these scans done on my brain when they suspected a possible aneurysm which unfortunetly for me was actually found up there. also getting a much more in depth scan of your brain may help too ya know? its kind of a matter of looking at all possible areas that could simply generate what real symptoms you are displaying.

since you got like instantaneous pain up in your head the moment they just stuck that needle in to your spine, i am wondering whether or not he actualy hit a nerve there? alot depends upon how deep he was into that specific area when you jumped too? but even without your jump, espescially if this was not flouro guided, the chances of him doing the wrong needle placement are just that much higher too, ya know?the one thing i am trying to actually figure out here is why they had to use two blood patches if there was not a true leak? these ONLY get used when a patient develops a leak that would cause you one he** of a headache til the CSF simply restored itself to normal levels and pressure.

have they EVER actually done a spinal tap on you or any other types of testing that would simply check out what 'your" regular normal(for you) intercrainial pressure is?
one possible therepy that could really help you with this is called myofascial release WITH craniosacral therepy. the actual crainio part of this simply tries to regulate the normal replenishing of our CSF. it also 'unwinds' stored traumas that do just store within ou CNS over time too? sounds kind of bizzarre but this is the ONLY therepy that has helped me with my severe muscle damage and getting my CSF flow regulated and decongests any area within that dura that simply can congest which would impair the normal ebb and tide of the CSF flow from that sacrum on up to our brains( that whole process 'should" all be within a very specific "normal" timing in there)? all of that area is all within one thin membrane/sac called the dura? from the bottom of the spinal cord on up thru the neck and surrounding the actual brain is actually one huge open area. if anything impedes flow, which can just occur with alot of different reasons, it would tend to throw everything kind of 'off" within that dura which would of course have consequences for us the patients. one of which would be headache to a certain degree.

i really do think considering just how long you have had to live with this particular nightmare of ongoing pain, just seeking our a good experienced therepy facility that offers the craniosacral therepy could really possibly help you with what could be causing this for you. i would seriously consider it just to see if it could help you at all, ya know? you really have nothing to lose here by simply giving it a try for like at least a month just to really see if this particular therepy could make a positive impact for you and on your life too. there is absolutlely nothing invasive about this therepy, its all done from the outside by the therepist and using his hands to just "feel' certain areas that they just know by repeated experience is having a problem. it really is a crazy therepy just considiring what these types of therepists can pick up by merely 'feeling it". having had this myself,i just really feel it would help you at the very core of what just could be the main problem you have had for all these years. just a really good suggestion for what you have and have had for way too long now, going on inside your body. 'something' started generating this pain and is keeping it fired up and very alive in you. that IS what needs to be found out in order to just treat it appropriately now.

i do hope you try and follow up on this suggestion. i just really do think it could truely help you with this agony you have been suffering for tooo long now. good luck with this and please keep me posted, FB
 
I went to my Doc. I told him about this myofascial release and craniosacral therepy. He said I was in luck because that very day he had a med. student who was in and knows about it.. Well I first want to thank you for even trying.. But as she was doing this myofascial and craniosacral therepy I remembered that a few years back I had tried this before and that it made my headpain worse and it aggravated it .I wish that it could of helped but ty anyways..
 
If you listen to the doctor and nurses, you should be fine! The main things that were stressed to me were the following: Lie down with your head raised on a couple pillows for a few days; drink plenty of fluids and make sure that you load up on the caffeine as much as possible; give the computer a vacation for a couple days(I did cheat with reading holding the book without bending my head over) and DO NOT bend over. If you get the awlful spinal headache they have to go back into your spine and do a "blood patch",of which I`m not sure of the details. When do you go in?
 
one BIG thing you have to kind of keep in mind here is if this actually even 'changed" your headpain in any way at all, this could possibly be the real underlying trigger here, ya know what i mean? there are MANY types of therepies and espescially injections that when the right spot is hit and worked on things just kind of WILL get a bit worse til they can work thru the problem areas then it gets better?

just how long did you try this therepy before you actually stopped the very first go round? this therepy is not one of those "feel good' relaxing therepies like a mere deep type of massage. things are changing and trying to reregulate themselves and decongest up there and within that dura, so it could very much exascerbate some stuff til it kind of breaks thru to the other side kind of thing? it is an ongoing 'process" that does take some time to just work thru, espescially if this has actually just existed for this very long period of time? just think of how many long years you have had this and been suffering with this. it WOULD be impacting alot within your CNS just that constant pain be fired inside, anywhere really just inside your body. any pain we feel just does impact our overall central nervous systems. i did not have the slightest clue about how all this really truely impacts us and our CNS either til i started picking my myo therepists brain during my sessions. it IS some pretty interesting stuff actually. everything simply kind of "plays off' each other in there.

you have not yet mentioned whether or not you have actually had the brain or spinal MRIs done at all thro out this whole continuing saga? did they ever actually do this much for you just to try and see if something within those particular areas was actually just there and generating this for you? there are just sooo many different things we can have wrong that can be the underlying reason for alot of different types of really bad pain. any headpain just would require more in depth looks at the most commonly invloved underlying areas. the spinal(espescially c spine) and the brain itself. just getting a very current set of MRIs done on those two specific areas could possibly, espescially with all this time that has passed, just show a particular area of involvment there. almost ALL real spinal problems just are very highly progressive in nature so even if you had any testing like MRI done even ten years ago, alot of things would change and be more likely to just really show themselves now, ya know what i mean? just a good suggestion for you.

i would just possibly see how this therepy would go here for you now, espescially if you did not really give it a big chance before? we tend to back off from any therepies that just are going to make our pain feel worse. giving this some time, AND most importantly with a highly EXPERIENED(like at least ten years if you can find one)therepist who just has had that very extensive ongoing experience really is the key here. they can just really totally "feel" certain things that the more unexperienced myo and cranios cannot only becasue they lack enough hands on to even be able to "feel" this stuff. this just does rely heavily on the facilitators abilities to 'feel' certain energies and just know the absolute 'right' spots to even do the therpies correctly. i was very lucky with my myo guy. he had at least 18 years just doing this type of therepy under his belt when i first started to see him a couple years ago. my particular myo guy is also a regular PT person too and runs out of my surgeons rehab and PT facility, so this is not some undereducated kind of person who only does this type of therepy. he is actually the lead PT guy in charge of all the other PT people. he also did my very very badly needed hands on PT following my rotator cuff repair surgery. i just knew i was in great hands and he got my ROMS all back again for me. i love this guy, and the myo release too. this really helps hold down the overall intensities of all my many pain areas. you just NEED the myo release person to really HAVE that experience. i just know my PT guy would not do anything to me or make things worse for my overly hyper body i have from spinal cord injury.

but experience with this particular type of therepy is just really crucial for you to obtain the best possible results. a student, well i don't know if i would actually just trust that inexperience with anything to do with this particular type of therepy, ever. not when this is impacting my CNS and releasing fascia and other things with mostly the cranio that can affect spinal here. but DO look into the MRIs if you have never had them or had them a longer time ago too. time just really can change and impact anything spinal that much, even within about only a years time. this is why any surgeon who is even contemplating doing ANY real spinal surgery on any patient, always insists that any MRIs cannot be older than like six months old. thats just how things can possibly change with certain findings there. i do hope you can find the actual culprit for all this ongoing hell you have had to live with, and soon? please keep me posted, FB
 
I had a myleogram Oct 10, 1988.. I have a headache every minute of my life since..That is 21 years with no relief..I would not sugest anyone ever get this done..
 
I realy thank you for your concern ..I did get in touch with in a place with a place right in my neiborhood. it is called the craniosacral institute of michigan. But because I am On a limited incom .I could not afford their prices.. Just my luck I have been living this pain for 21 years.. Just when I thouht I seen the light at the end of the tunnell.. I was a a train coming straight at me me.. .JUMP RANDY >JUMP>> well ty for your effort..
 
Back
Top