Newbie,,,short notice need answers

[PepsiDoodles]

Hi all, a quick breakdown,

have an emergency situation, been in ER all day just to get STAT MRI ordered by neurosurgeon from UC Davis spine center Dr Panchal is my neurosurgeon there, I had the MRI done in Fairfield by where I live, will be picked up by ambulance and taken to UC Davis for surgery if that is what he says is best..

I have several spinal problems, 1. syringomyelia with chiari malformation 2. severe spinal stinosis of the c-spine with herniation's and other bad things, degeneration and so on, many pinched nerves 3. he did a “flick finger test” on my middle finger and said it was positive and made sure the other 2 doctors in the room wrote it down, did that test 10 times to be sure

the past week I have had paralysis complete left side of body from head to toe, mouth so numb feel like shot full of Novocain, most of the bad numbness has somewhat subsided but still comes and goes, teeth staying numb,,,

I am praying it is from the srynx at my c-7, my c-1 through c-5 are severely unstable, his concern is it can paralyze me for life if the surgery not done to correct it in time!

He mention a fusion type of surgery, all was a blur to me, he asked me to stay and have testing there, but had to get ride from insurance and they had a time schedule to keep so I told him I had to go home and he made me promise to go to ER today and I did, took all day to get the MRI done, and by then he had gone home, so hope to talk with him in morning. Had to catch last bus home, and still had not got results from ER doc, so told him I needed to catch the bus or would be walking home over 10 miles, and no friends or family here to help me not even a neighbor

I have spasms so bad they pull my ribs out and have to be put back into place 1 to 2 times a week and horrific pain in neck today along with bad back spasms between shoulders, have ice on both

Allergic to EVERYTHING! All opiates thrown at me so far make heart palpitate,,,, Tylenol is only pain med I can handle, scared as hell the pain of this surgery will kill me! Sad smile or leave me paralyzed from neck down, if nothing done the disc will paralyze me he said, and eventually the srynx will to but least it is slower and it is not operable and a bone spur growing right into the middle of the dam thing to top it off, so srynx look like a peanut shape, like an 8, it is 9mm by ?? don’t know the latest but last yr was 9mm, yr before was 3 x 5 mm, so growing fast.


My esophagus no longer works, so will have g-tube for the surgery and recovery am sure,,can get soft foods down now with lots of water...

Dr Panchal is the best of the best for this type of surgery, he does what most will run from that I do know, he came highly recommended from the foundation of my disease, as well he studied under my main specialist and did his residency under him and excelled all that I have been to so far, except Dr Nwealt at OHSU...love him..but feel Dr Panchal is very qualified and if anyone to do this he is the right one...just so scared, very very scared

Last April he was talking full c-spine laminectomy, and a cranial decompression an some other scary stuff, then a pre op meeting he said I was to young for it yet, actually praying a fusion if thar all he is talking about now, like I said my mind went on fog state his lips were moving but I did not hear much of what he said, just was in such shock

So sorry to throw this on everyone being new hear an all but don’t know what to expect or where to begin, found the what to take to hospital an so on, great list...but with no pain control,,,,do not know if I will be able to handle this, any of it having hard time managing it now, getting epidurals every 2 months and the last one went terribly wrong in so many ways, can’t even get started on that mess,,will if I live through this, it is a scary story for sure, dumb ass doc that thought he knew what he was doing did not look at my MRI BEFORE the dam procedure an so on, gets worse! Still feel last epidural doc hit through disc or something? Herd bad neck bone cracks for days after it, never had that before either...

And after the last 2 epidurals had heart palpitations from the lidocaine

Also, get some relief from cort trigger injections, best relief 2 to 3 weeks most ribs do not go out at least..but can’t get those that much either

SO, I guess I need emotional support, and any advice you seasoned c-spine patients have to offer as I am at a loss right now

Thank you in advance!

[Maria]

emergency surgery or pretty close to it.. I don't know that there's anything to say other than if you had time to get a 2nd opinion and the only one I could think to recommend would be Dr. Frank Coufal in La Jolla CA.

Sometimes we think too much and let things get beyond a stage that's repairable and I'm just concerned that while the pain management part of what you're talking about is probably huge especially to those of us that have been on pain meds (like myself for 12 years) the likelihood of being paralyzed would outweigh the other concerns to me and probably degree of multiple spinal concerns you that necessitate a rapid decision.

I hope someone with much more expertise than me that will read this will reply to you.. I have had lumbar problems for 30 years and my C spine has some "stuff" but not enough to say that I've had much experience with this area so I do hope others with c spine injuries and surgeries will reply to you.

Please keep us posted and I wish you well with everything. Look forward to hearing how everything goes. Maria

[PepsiDoodles]

Thank you, yes, was awake all night reading up here, wish today were not a holiday, so will stay in bed, meanwhile the pain is intense, keeping it iced on an off, called spinal surgeon on call at UCD, and she said same, Dr still waiting on CD in order to get the best perspective on the full surgery in his chart notes, but that surgery will be done no matter what and was written in his chart it will be scheduled as an emergency.

Just worried, scared all the above. I have been told I needed surgery since 2002, and been to the 6 top notch surgeons in the country for this, ALL threw their hands up and said not with a 10 foot pole basically..this Dr was just nicer about it,,but it is at a point where it is the only option, and no, no time for another opinion, besides the fact am not to move but to go to the bathroom and get a little food and that is it, not many choices

I am glad for the information I have found here, I will need the bone density simulator am sure of it, have osteoporosis, as for the meds, found out will be pumped full of antihistamine then given duladid for post op pain, still will not know all details until hear from doc could be today, doubtful, but tomorrow for sure, have bag sort of packed, and most arrangements in place.

It is my belief that the last epidural the dr screwed it up so bad, as he said did you here that crunch to another dr, and I have had them before, not by him, and was in horrific pain right away from it, and he hit to close to a nerve and was only able to get a little of the steroid in...the swelling started next day over area that is bad at base of neck more right sided....anyway, it would be about the right time to feel all of this as what steroid was put in, would of helped keep some of the swelling and pain down thus making it somewhat bearable, but it has worn off and the swelling is what is causing the pinching of the nerve now as well no pain control left in the area...my neurosurgeon in fact suggested I should sue him, but right now not up to anything like that, just want to get through this alive and able to walk. That dr who did the epidural, I said to him, don't you want to look at the pics and reports from the dr who does this regularly for me as he is the director of epidurals at UCD and that is all he does day in day out and said was hardest one he had ever done...and the dr reply, oh I have done thousands of these, should be no problems...

Then after the epidural he called me at home every day for a week asking how I was, he knew he screwed up and I knew it to, just did not know how bad, will find out soon enough I am sure!

And 10 days post epidural he had me come in for follow up, looked at lump which is 3 fingers wide and round and said I thought you said it was huge,,,I said no I said it was large, asshole! He pokes fun at me at every visit, I hate him! But have no car an unable to get to another pain clinic so am stuck! I would of gone to UCD, but no one to go with me most of the time.

Then last Thursday the day I went to the ER, I get a call from that bad dr office saying how he is lightening his work load and I will now be seeing a new physician who will be working there..his way of getting rid of me, I hate him anyway no love loss there,,in fact when I was in the ambulance he was in his car right behind me and I waved and flipped him the bird Had to call his office per dr Panchal and tell them if I am sent to that ER and his office is called as they are on the "list" they are to send me to UCD..anyay,

Too stressed to finish my coffee even just crazy time, but am sure he did the main damage I am dealing with now

[PepsiDoodles]

still looking into why the middle finger flick test is so important, as he made such a big deal out of that

[PepsiDoodles]

and if it can't get any better (worse) pun intended! Just called to be sure CD was sent! IT HAS NOT LEFT THE FRIGGEN IMAGINING OFFICE YET! So my neighbor is going to get it today, so now the neurosurgeon will not get it until Wednesday at my appointment when he should of had it today or tomorrow, omg, can not believe how many irresponsible people there are in the dam medical field, including doctors! Could cry my eyes out right now

[Maria]

My earlier a.m. reply to you as one would think English not my first language with so many mistakes contained therein!

Wow.. that guy sounds like a real arse! I think 3 fingers wide of swelling on a neck is pretty damn large (I might be mistaken though I was thinking you're talking about cervical epidurals?) ... he sounds like he was trying to downplay his mistake and yes shoving you off on someone else because he's probably is afraid of either making more mistakes or not wanting to take the responsibility of his own actions.

I had two lumbar ESIs where too much fluid abutted a nerve and man that was outrageously painful and I screamed out both times. After the first doctor did that I never had another ESI with him and the 2nd time it happened was with someone I'd been going to for a while and he was super concerned and yet super honest about what happened and the pain abated within about 15 minutes. I used to get my lumbar ESIs without anything but a local anesthesia at the site but after that I decided I'd rather not know what's happening as I was afraid of tensing up and moving.. didn't have any probs after that and continued with same PM for years.

Have you checked out ChiroGeek's Home Page because he has a lot of tests on there that might explain what you're wondering about. mmglobal most likely knows as well what the significance of the test is..

I so hope that others persons with cervical surgeries will see your post and reply.

sending my best ~ Maria

That's pretty funny about you giving the bird to the doc while waving at him from the ambulance .. sounds just like something I would have done!

[PepsiDoodles]

thank you Maria, and yes it was a cervical epidural, will check out the link now thank you xxoo

[PepsiDoodles]

the flick middle finger test is called Hoffmans, it is used to determine rate of spinal cord compression and tells the surgeon what area of spine it is beginning point at, from what I could figure out after a brief read....

[PepsiDoodles]

ok, got report in hands, here is what it says,

Grade 1 anterolisthesis of c-2 upon c-3
Advanced degenerative disc disease throughout cervical spine
Cervical cord demonstrates region of T2 signal intensity at the c-7-t1 space

c4-c5 broad-based herniation, flattening of cervical cord

c5-c6 slight flattening of cervical cord

c-7-t1 advanced degenerative disc disease broad-based herniation, encroachment upon central canal with flattening of the cervical cord with srynx change or myelomalacic change

[Maria]

the latter results to mmglobal. He's the creator of this site and has had cervical surgery and has connections with a number of spine surgeons so I'm really hoping he's going to see your post. I know you have to be feeling like you're up against a rock and hard place and would like some reassurance or someone that has a really better idea of what you're talking about. Honestly I know that 11th hour feeling...

I'm here if nothing else to just be here and listen no matter what happens no matter what you want to say~ Maria

[PepsiDoodles]

thank you very much Maria, yes I hope they read it to, I will be here until Wednesday, or not, will go in by ambulance if anything more strange happens

[theBadCormorant]

Originally Posted by PepsiDoodles

the flick middle finger test is called Hoffmans, it is used to determine rate of spinal cord compression and tells the surgeon what area of spine it is beginning point at, from what I could figure out after a brief read....

hmmm, I have just been trying that test on myself and I can't get any reflex reaction out of my thumb on either hand - I'm worrying now, didn't think there was anything much wrong with my neck...

I am curious about the mouth numbness you mention in the first post, as far as i know the facial nerves go no where near the spine, is there something else going on ?

And best of luck with your problems, sounds like you are going through hell. - what age are you ?

[PepsiDoodles]

the srynx has changed in the report but failed to mention how, am sure will see at docs, but that would cause the facial numbness, it has already shut down my esophagus

[theBadCormorant]

a brief read on it and it would appear it is all to do with spinal fluid and can affect the facial nerves. did this happen after the botched epidural ?

[PepsiDoodles]

YES it did!

[PepsiDoodles]

went through this sort of over a yr ago with the numb mouth before I ever got an epidural though to

[PepsiDoodles]

just about to turn 51

[PepsiDoodles]

Originally Posted by theBadCormorant

hmmm, I have just been trying that test on myself and I can't get any reflex reaction out of my thumb on either hand - I'm worrying now, didn't think there was anything much wrong with my neck...

I am curious about the mouth numbness you mention in the first post, as far as i know the facial nerves go no where near the spine, is there something else going on ?

And best of luck with your problems, sounds like you are going through hell. - what age are you ?

from what I understand, you don't want any reflex on your thumb so that is good, I did it on myself an it springs on its own

[PepsiDoodles]

ok, I am technically challenged, BUT, I figured out how to open the MRI on my pc, and lets just say it DOES NOT LOOK GOOD AT ALL! The srynx last yr was at c7 9mm, from what I see it is c6 to c8 now and huge but dimensions not given, lots of real bad looking shit with disc's and so on though, can see unstable bones excreta,,,,had so many of these dam things can read them myself pretty much by looking at the pics but yes, can see why the bulge is there now, can also see where the epidural hole is and it is right into THAT DISC! and bone below it, and I can see why it is popped off at a weird angle going to burn a copy of this before I leave the house.

[Maria]

contacting mmglobal (Mark)here .. he could probably be helpful with looking at the MRI... there is contact information for him somewhere on this site (contact us).

[PepsiDoodles]

thank you Maria thank you!

[theBadCormorant]

Originally Posted by PepsiDoodles

from what I understand, you don't want any reflex on your thumb so that is good, I did it on myself an it springs on its own

I see, the reflex is an indication of a neurological problem elsewhere within the spinal column - presumably similar to when the knee reflex does a double or treble kick. So not a good sign.

I read elsewhere that this phenomenon (Hoffmans reflex) can appear in very healthy people but when it does it will always appear in both hands, hence some (maybe all) doctors only take note of it when it appears in only one hand.

I tested the wife by flicking the end of one of her fingers and noted a very strange reflex, she went ouch then her other hand flew up and hit me in the ear - hmmmm - not sure what that indicates!

[PepsiDoodles]

Yes, it is called Hoffmans test, but the middle finger is and he flicks it down, as he is flicking it down, jus the end flange of it, he is looking to see if the index of thumb move involuntarily, it they do it is positive for ALS or (forget the other condition) but if the patient has known spinal condition it tells them where the nerve is impinged at, like the c spine vrs the thoracic or lumbar, if positive it is in the c spine,,, well am off soon, not sure what will happen, just had to get a tooth infection an was told yesterday could go either way, might have to stay or could be sent to get dental work before he does anything...

[theBadCormorant]

very best of luck

[PepsiDoodles]

thank you

[Maria]

My ex neighbor (I've moved) had a positive Hoffman's sign and she went to Dr. Frank Coufal in La Jolla CA and had surgery done with an ADR and fusion (I'm not exactly sure which levels though something like C5/6 I guess)... anyway she's 6 months past her surgery and last I saw her in December she was doing incredibly well! She sings this surgeon's praises as I have heard others do as well (Neurosurgeon).

I wish you the absolute best.. I'm a bit older than you (will be 60 next month) though sometimes feel much older (though act like I'm 2)... anyway please do keep us updated if you're so inclined. I'm very interested to read how things progress with you and whatever treatment you have and hope you will remain part of the spine community here and keep in touch.

I'm sorry if I couldn't answer any of your questions .. most of my own direct experience with surgery has been with regard to my lumbar spine.

take care and sending you positive thoughts/wishes/prayers for your situation! Maria

[PepsiDoodles]

Just got back, way more complicated than I can begin to even imagine, lets just say c2 all the way to t2, will fill in details when I get back going to get a beer WHILE I CAN LOL! anyway, will be 20 plus hr surgery at best, all the goodies involved,,,what a crappy day this turned into, a fusion I was ready for, not all this!

[Maria]

If this will be done in stages and/or ? I think there's someone that's been on the forum here named Patty that is pretty much fused from cervical to lumbar but I believe she's had a number of surgeries to get to that point.

Is your surgery scheduled for this week or ?

Hope you were able to "medicate" a bit with the brew and not think too much..

take care,

Maria

[PepsiDoodles]

this will all be done in the same surgery except the lumbar and rest of t spine if I make it through this, I will need surgery on my t spine and lumbar also, bad but this is first, dam ribs hurt bad right now, he did say that will go away if anything to look forward to that is the only thing......c4 qn c5 anterior cervical discectomy and fusion with bolts and screws and bone grafts and so on,, c3 to c6 posterior decompression laminectomy, c2 to T2 posterior fusion with all the hardware autograft/allograft, forgot what he is doing to c2, scares me to remember, and due to disphagia , more than likely will never be able to eat again but through a feeding tube as surgery will make the condition worse as nerves already not firing in esophagus, also risk c5 motor root paralysis and blindness, and death, as well as paralyzation, by the time he was done telling me this I was in a blurr, then he started talking about the rest of my spine and the other surgeries that have to be done, almost as bad, but not as urgent.....will be a few weeks to get testing done, and he order a ton of them and wants tooth infection taken care of as he said can't do any of this for a few weeks until it is cleared as it will be in blood and bone and I will need to see cardiologist for clearance of infection and heart, but if paralysis continues he will do it and load me up on antibiotics if I can't get to dentist to. Was just way to much more than I was ready to hear! And I asked him do you feel you can do this? And he said yes and he is the only one in CA that can if anyone can, I said I know I did my homework on you long ago, you are the best for what I have, and for that I am grateful, and I asked him if anything went wrong to please just UP the anasthsia and let me go, as will be left with enough to live with should I live through it..he said can't do that either he said the surgery will be no less than 16 hrs and close to 20 with NO complications, will get blood infusions an so on...should I make it though it, and have feeling in legs after a week or 2 in hospital I can be sent home as long as someone is here to care for me,,working on that with Nadira now,,omg rib killing me tonight bad, am sure from the stress and spasms...so tomorrow need to hitch hike to dentist, no other options, and friday need to get to GP and get some bloodwork done and other stuff he ordered set up, then Monday see creepy pain doc that did bad epidural that set all this in motion and need to be put on duladid with histamine to control pain if not allergic to it and get more cortisone injections as ribs hurt so bad right now.....then tomorrow and Friday will get info and apts set with all other docs, he said there will be no less than 5 docs involved with this surgery maybe more,,,,I NEED ANOTHER BEER lol! Way to much for me to begin to comprehend right now! He said no more buses to much danger of neck bones moving from jerky stops and so on, called insurance again, no luck, will still not take me anywhere under 40 miles just so sad right now so sad wish to god I had a friend here!

[PepsiDoodles]

had one beer, but still just overwhelmed by it all

[mmglobal]

Sounds like the surgeon wants to do the maximum surgery in the first pass??? With spine, less is usually a better option. (spoken without knowledge about your case, so a may be all wet here.)

Mark

[PepsiDoodles]

yes, he said no options, several ares urgent, he explained it in detail in easy to understand terms,,,always knew this time was coming, my uncle who passed was at one time among the top 2 best spinal surgeons in the US, has written several books on the subject, wish here were alive now he told me in 1986 I would be undergoing this ordeal someday, just never knew how bad it would really be...but the Dr said if the other cervical issues not done, will have way more problems if not done at same time for best outcome if that is any kind of thing to look forward to,,,almost feel might just go paralyzed and let nature take it's coarse as if I do make it through it, not much of quality of life from the sounds of things to look forward to anyway, just don't know what is right and if it is even worth it right now, so sad but like I said, have been told in past since 2002 needed surgery badly then, now it is imminent

[theBadCormorant]

As I said before, the very best of luck, your situation sounds truly frightening.

It would appear from your posts that your problems started in your early twenties, what is the root cause of your spinal condition ? what set it all off in the first place, injury, disease, genetics ?

[Maria]

I'm not sure I got the first name right but when I looked him he is listed as a DO (osteopathic doctor) and board certified in neurology not neurosurgery. Also seems like his experience is very limited in terms of years practicing.

I may have the wrong person. Is the surgeon going to be someone else? I hope so with all that surgery you mentioned I would want to go to someone that has had at least 7-10 years worth of surgical experience under their belt and loads of experience doing what is needed. Ok I think now I see there's another person with the same name I believe that is a neurosurgeon in Sacramento .. is this the surgeon? Sorry .. don't mean to be rude or impertinent and I imagine that you of all people since your uncle was a neurosurgeon are going to be very careful about who's doing surgery on you as long as you're able to pick the best (sometimes insurance doesn't allow for that).

RE dental work... I always have the dentist lie me down completely to work on me as my low back feels great when this is done (and even better if my head is a bit lower than the rest of my bod) and then a nice cush of towels under my neck .. It bugs me a lot to have my mouth open for any amount of time for dental work.. usually I get migraines with the lights above too so have to cover my eyes and be as relaxed as possible. I often leave with neck pain if I've been too tense and had my mouth open for longer than an hour (like when I had a root canal).

It sounds like you have a bit of time at least before your surgery re clearing up the dental infection...

Yeah that idea about becoming paralyzed maybe because the thought of surgery is so overwhelming is probably something like what I'd be thinking too but then again hopefully if it can be avoided that sounds best and then the other surgeries can be done at a later date.

It does sound quite overwhelming though the best one can do is take it one day at a time and try to prioritize and get thru what is most necessary.

Are you thinking about getting a 2nd opinion at all? If there's time and you have insurance I would as that is one thing that just about every insurance will pay for is a 2nd surgical opinion esp. one of this magnitude. I think surgeons should encourage it as well with regard to the degree or magnitude of surgery that you've mentioned.

I suppose having an uncle that was a top neurosurgeon probably gave you an edge there though with knowing more about your condition than most would know. Sorry to read he's no longer around. I'm sure now would be one of those times you really wish he was!

take care and best wishes each day (I tend to freak out thinking about surgery!)!! Maria

[PepsiDoodles]

yes same Panchal, no he is does not have the most amount of years, but is highly recommended in this area, as well is the only Dr that treats patients with my disease Chairi Malformation (hereditary) along with Syringomyelia from c6 to T1,,he does the most difficult cases no one will touch in Northern CA....I have been to 6 others,,as well.

My spinal stinosis is due to a car accident back in the early 80's, as well as other spine issues.

I did call my other neurosurgeon in Oregon who used to be one of the head in research for this to consult with him on it, Dr Neuwelt, now ones of the heads at OHSU, as good as they come, as well my dr agreed to with him as well.

Dr Neuwelt called me this afternoon and agreed with him on the procedure as well the necessity and said I would be in the best of care with Dr Panchal, which meant allot coming from Dr Neuwelt for me, and was a no charge consult, he has treated me for many years and is well aware of the conditions am dealing with.

So yes, I do feel he is qualified enough for this,,but am questioning myself weather or not to let myself just go paralyzed and pass from it, as it will shut down my nervous system also. And try to enjoy what little time I have left.

Or go through with it and pray for the best outcome, that will for sure be a much lesser quality of life and will include some partial paralysis in the arms that is a given, as well the feeding tube most likely..

Just do not know what to do I have no question about his skills, have a few apts he is setting up as well a psych apt as is necessary for this type of surgery should I decide to go through with it all...

Besides myself what to do

[theBadCormorant]

As long as you're alive there is hope so don't give up - you are due a bit of good luck so may be the op will turn out much better than you think.

In any case I am sure surgeons give worst case scenarios to cover themselves, they wouldn't do it if they thought they would leave you worse off.

never give up.

[PepsiDoodles]

He and Neuwelt both said will loose partial arms use of both arms and will more than likely be on feeding tube forever, that they both said same on and I love to eat and cook and I am a great cook to,,,just so sad right now, sorry having a huge pity party

[Maria]

I'd be thinking all the same things as you are and having the huge pity party too. All the same wishing you the best with any decision you arrive at and I personally think all too often spine and other surgeons don't go into worse case scenario unless truly there is very strong possibility of something happening and they truly want the patient to know while the option of not doing surgery will likely render severe consequences the option of having the surgery is not without potentially severe consequences as well.

It boils down to does the benefit outweigh the risks. Clearly it appears your previous doctor and one treating you now must think so or at least that it's worth the risk as long as you're clear on "potential" risks.

You do not have any easy decision to make though I understand your considerations and what you're thinking. Meanwhile just do what you need to re prepping for surgery. Ultimately you have the last say on following through.

[PepsiDoodles]

Thank you Maria, yes, been a hard thing to sort out for sure was wondering if anyone else has had something this invasive done all at one time, and what the outcome was?

[Maria]

I worked as an RN/NP and I always advised people not to have let's say two bunionectomies at the same time or cervical surgery and lumbar surgery at the same time if whatever was ordered was elective surgery. When it's of an emergency nature then I feel it's the surgeon's call however I also feel that a number of 2nd opinions would be requisite (time permitting) if it were me having said surgeries...

Now .. because it isn't me and because I do not have the conditions you do nor am I in any way knowledgeable enough to even comment on your situation as to whether you should or whether you shouldn't with exception to whatever I've already commented I'd at least recommend visiting some other well traveled spine websites and also recommend that if you've not spoken directly to mmglobal perhaps you should as Mark may just be able to be enough of a sounding board to maybe help you out a bit more than any other of us could that are responding.

There is one spine website I'd like to refer you to but for the life of me cannot remember it since I no longer frequent it and haven't for a few years. There is the Massachusetts General Neurological forums that I think "were" incredibly instrumental in helping so many of us especially about 15 years back like when Mark (mmglobal) was making his decision to get lumbar ADRs done.

Please start a separate topic post and reach out to see if someone here that is better updated than myself can inform you or reach out to Mark (mmglobal) and also try the search function.

Are you alone in this decision? I am pretty much on my own and I know that everything is that much harder when we are so please .. keep trying to get your answers~ there are so many people out there that have been thru all kinds of stuff spine wise. You need them.. their input, their support.

Godspeed~ Maria

[PepsiDoodles]

Thank you so much Maria! Yes I will tey to email Mark mmglobal, as well look into the other forums,,, Yes am by myself, have a friend who will fly in before the surgery and stay to help once out of hospital should all go ok if I do it...still on the fence..but just talked to surgeons nurse, and she explained that it does all need to be done at the same time and the why's she also answered as well, very nice lady....she also said he is legally bound to tell me of the things that can happen, but was encouraging and said a very large percent of his patients whom have had similar and more at one time have got 100% recovery, not in every case, but that he is very good at what he does and pray for the best outcome and that the surgeon himself is a very spiritual man, and that is why he takes the cases no one else will as he feels it is his duty to try to help whom he can, so that was good to hear if anything, but yes am still looking for answers will be researching all weekend, next week filling up fast with dr apts thank you for taking the time to help me,,you are so appreciated as being alone in this is horrific at best and the thoughts are overwhelming to say the least I am sure you can identify with. xxoo

[PepsiDoodles]

Thank you Maria, got a hold of the ASAP.org foundation, going for another opinion,,,read where the disc's can be totally replaced with no need for fusion if there is an option to that I am taking it, but think fusion is to move c2 back into place as it is at a bad angle right now,,don't know but going to look into it..

[Maria]

That sounds good. I've not heard of that organization before so will check it out. Sounds like artificial disc replacement re replacing discs vs. fusion?

Good luck.. good to check things out while you're still able to (a fact I learned post a failed surgery) although I do understand emergency surgery or surgery done for certain reasons (that practically mandate surgery to try to preserve basic function) is different than elective surgery...

[PepsiDoodles]

I read extensively last night, and the fusion will for sure leave me unable to swallow considering I have esophagus problems already, but the surgery will end it,,,,,,another thing,,,,,,in the state of CA, Dr and medical universities do not offer the same services as others even though they take the same insurance! For instance, UCSF provides 3 weeks of in home nursing care after this type of spinal procedure with same insurance where as UCD provides none! And so on, same with procedures,,,so going to see what options are out there,,,have read that the total disc replacement is not done on more than 2 discs in same area,,so don't know it that has changed or?? But am looking into it as from what I read, people with swallowing problems that had this type of surgery had no problems after their surgery about a week post op were still able to swallow as before,,,so yes looking at any and all options while I can,,desperate for anything better!! I did hear from Mark, will speak to him this weekend, and he knows a gal who also has my condition syringomyelia who had surgery also, and she is doing great,,,not that way for everyone I know, but gives me a little hope now! But the biggie in CA no matter what insurance you have, you need to shop around, as a specialist in the same field does not have to offer the same or better service as another specialist will, so worth the phone calls!!!!

[Maria]

That you've spoken to Mark and are checking things out. Sometimes even with checking things out we make same decision as if we hadn't tho at least what I learned from own experience is that I was way more at ease with myself and my efforts re whatever decision at least when I felt I made the effort to check things out more thoroughly.

I didn't do that with 2nd spine surgery and it was a really horrible failure and I was just not in any way prepared for that. Took me years to stop blaming myself for the decision I made re surgery as only I really lived with the repercussions of the outcome ( and probably my poor parents that felt my emotional pain near as deepas I did or deeper).

Continued support and best wishes for all thru your process/endeavor/journey. Mark is a wonderful person to connect with thru a spinal journey and esp if you're alone.
Maria

[PepsiDoodles]

Thank you so much Maria! Yes, he is very resourceful and knowledgeable also!!!!! Talked to a friend in So CA a few minutes ago, had almost as much as I am having, but said same, when she saw what this doc wants to do, run for another opinion! She said wished I lived down there as could have her surgeon do it, and he is very good,,,but am 600 or more miles north of there! And have hard time getting around here lol! Anyway, thank you for your support and help, will let you know what way it goes,,, and yes, parents will feel as much pain if not more knowing their children have to suffer so.....I have no children,,but watched my mother cry for me many times over the years,,,broke my heart to see her cry...miss her every day, she died in my arms almost 7 yrs ago, still seems like yesterday..........back soon when loaded with better answers I HOPE xxoo

[Maria]

well you might want to give Dr. Coufal's office a call and see whether he would see you (or talk to Mark about this possibility). Would be well worth the consultation if he'd be willing. It's a trip down south to La Jolla and right outside of San Diego. Super nice area.

My first ADR consultation was with a surgeon at UCSF (I used to work there in Neurology and Neurosurgery back in early 80's!) around 2003. I had just moved to Florida for a year and half and then got that consultation at UCSF thru WC.

Anyway good luck with other consultation. Keep us posted!

Maria

[PepsiDoodles]

Thank you Maria, no way to get down there though! Wish I lived in FL!

[Maria]

While I liked the winter there I didn't like the summer which could last anywhere from May to usually beginning of November with incredible heat and humidity. Esp. July on... rain pretty much daily I think like Aug thru Oct and the biggest bugs I've ever seen except maybe when in parts of Mexico!

My arthritis didn't respond well to the humidity at all. In fact I think my hands hurt so much in the summer there I almost didn't feel how much my back hurt!

So while I know there are many people that love to live in Florida I was not one of them. Also I was not able to even find one spine doctor that would see me because my back is covered by CA WC and also only 1 PM out of 200 that I checked with would see me and we had to drive an hour each way for me to see him then sit and wait for 2 hours to be seen for 2 minutes and drive back.. it was pretty bad really, at least for me.

I'm good with staying right here in good ol' SoCal or CA (southern because it was warmer than living in SF back when I used to live there) in the Richmond district.

Sometimes there are some good rates on flights from Oakland/ SF to San Diego or LAX. I see Fairfield is about 38 miles from SF and 33 from Oakland.. so guess you're not that close to the airports but not super far away and then I don't have any idea how well you travel.. I can only take so much bouncing around and now that my feet are problematic things are a bit more "challenging" to deal with~

[PepsiDoodles]

Yes I love Florida, bad weather and all, but I got out of there fast when a hurricane was coming close and I was in key West..

Lived in southern CA also, Temecula, had a business there, and like you said to, the weather there is so much more accommodating!

Right now I don't drive, nor do I have any friends here that do, in fact no friends here at all. The car I have is dead, pistons an all the fixings went wrong, tried to have it fixed, way to much more than it's worth, so gave up on that, as in the past 2 yrs, went through 2 BMW's and Mercedes SUV, and now this last car, all similar problems,,,so for me, the thought of dealing with that issue right now gives me a migraine lol

I get to dr apts with the help of ins, but found out yesterday should be on Medicare instead of Medi-cal, so need to go to SSA this week.

Travel right now for me is not an option, unless a hour ride or less, my service dog just had cancer surgery, started Nov 1st, and had another one 2 weeks ago, so can't really go anywhere, unless for a day flight and back? And providing ins would cover it, but if done so far away, just to many things, no where to stay near for recovery and follow ups and so on, great idea, but not in a position to do that, wish I were rich, but this illness has killed me financially, in every way shape and form!

But somehow am making it work, have not given up just yet, but yes need more opinions even if 1 has any better options...talked to a friend last night, she also had done similar surgery, but she also said way to much all at once, and to run for another opinion..so will be a busy week am sure.

Sent my stuff to Mark, not sure if he got it all have not herd, will try to touch base with him today and find out.

Wish I was back in SOCA least have several friends scattered about down there Have a great day xxoo

[Maria]

I don't drive much anymore and definitely not on the freeway. I would either get a ride to the airport or take Super shuttle or something of this nature. I can certainly understand not wanting to go anywhere while your dog is recovering though as I don't go almost anywhere now because of my 19 y.o. Persian Cat that's in stage 3 chronic kidney failure. I don't like to leave her for very long during the day even let alone overnight. I have a dog too but she is staying with my ex since I've not been able to walk her regularly with regard to my feet and also staying because my cat needs to finish out her life alone with me at this point.

I have a 2002 Mitsubishi Montero Limited. Great vehicle that has had almost no probs since I got it in 2005. Something is going on with it now that needs to be checked out though hopefully it can wait a bit longer. it is a huge gas guzzler though I do like driving it re my back being comfortable in it and it's size seems to be more protective than many smaller vehicles.

When I lived in SF I didn't have a car and most of my friends didn't have one either as if they did they paid more in parking tickets a month than they did the car payment just about.

What kind of dog do you have? I have a darling little Mini schnauzer, Lola. She's got a very enlarged heart and is on 2 cardiac meds twice/day and Lasix twice daily too. She is much more delicate now because of her heart and her life expectancy supposedly is greatly reduced because of how enlarged her heart is (she'll be 11 y.o. in June).

I hope your dog is recovering well. Are you on FB? Most of what I post there are photos of Alaska (cat) and Lola (dog).

Glad you're getting your stuff to Mark. You'll hear from him soon I'm sure.

Ok take care and hope your weekend is going Ok~ I've been staying off my feet as much as possible as my posterior tibial tendonitis is flared up and weight bearing just flares it up more. Hopefully soon the flare will pass and I can be a bit more active. Maria

[PepsiDoodles]

Yes, she is recovering very well so far, just pray no more lumps, she has MCT type canine cancer, but it is what they call "spindle" grows with finger like projections and can pop up anywhere or in any organ, just pary they got it sll, she has to have regular blood work done as well monthly vet visits for the next 6 months, so would be better to be here..

She is my little "hero",,, she sees' organ failures such as heart, liver, kidneys and other things as well as does things,,all in a small 20 lb package of a Doxie that in her mind she is a doberman in disguise lol. On Thanksgiving day she saved us both in a huge way, there was a natural gas leak in the house, woke to her standing on my chest barking at the top of her lungs, I looked at clock it said 10:30, I never sleep past 7 am,,then once I came to smelled gas grabbed her and ran out door called fire dept, was so sick,,,,they said 20 more min I would of been dead,,,not the only time she has done her heroic job, she has saved a few friends as well as my late fiance, several times I truely would not be here without her

You can see my page on FB, she has her own pagehttps://www.facebook.com/pepsidoodles.haley.9 and mine is here is a link https://www.facebook.com/betty.haley.9 please feel free to add us!

I am spending my time resting mostly the past few weeks now and making homemade soup, as it is easy and will last a weeks worth at a time...

Need to go to SSA this week, found out I should be on medicare not medical, so need to get that taken care of right away, so many things to get done and time going fast!

Off now, had beans soaking overnight and ham diced to go in, still getting weird tingles and numbness, but told doc would keep phone near as well all meds records but cant take this in bad stuff day in day out, have to move around some

Hope to see you on FB,,xxoo

[Maria]

Your dog is adorable!!! Our dogs are about the same size actually! My kitty is hanging in there at 4.5lbs.. I used to have her shaved pretty often in what's called a "puppy cut" but now that she's so skinny her fur is grown out quite a bit so one can't tell how really thin she is!

I always tell people if only we humans had fur we could look good forever too!

I'm going to send you a private mail if you've got that featured enabled.

BTW you are a beautiful lady and looks like you stay in really good shape esp. for someone that loves to cook and eat!

see ya on FB! Maria

[PepsiDoodles]

Awe thank you so much Maria! Used to teach skiing for 18 years in the winters, as well very athletic all my life, think that is the only thing saving me now health wise...have a high thyroid ob the bright side can eat pretty much whatever I want doc said as blood work is all good..then I asked, like deserts, you know the buttery sugary ones then she said don't go overboard lol! Yes, love to cook! Might be my favorite hobby now in fact lol! Just have to pace myself though, like make a pie crust 1 day, then the filling the next then on day 3 it goes to the oven, but so worth it

Your kitty is so fluffy and pretty, she does not look a day of 19!!

And yes, chicken is the main reason Pepsidoodles sits by the oven, she knows when it is ready and comes to get me, mamama it's done hurry, get it out now, lol, if she could talk I would be very afraid what she might have to say lol!

The pic at the beach was taken on the 12 th of this month, the paralysis was coming and going in different parts, right after that pic, whole left leg numb to toes and hobbled to a long and enjoyed the view,,,,such a pretty beach! A friend drove up for the day and said get myself together we are going to the beach, she live in Santa Clara almost 2 hrs south of me.

Not sure if I have email on here, will look, but here is my email bettyjhaley@hotmail.com

Your pic is lovely, you are a beautiful woman yourself!

So nice to meet you!

xxoo

[PepsiDoodles]

Exhausted and it is only Tuesday!

Got a tone of cortisone injections into the spasms, what a relief, then had ribs moved back into place!

Got a referral to UCSF rushed through insurance thanks to my awesome GP! She is truly 1 in a million, so lucky to have her as my GP! She freaked when she read the surgery order and got on the phone with my insurance to get the referral rushed through, am blessed to have her

Got insurance straightened out, was on wrong plan since the 1 st of the year, and I never would of known had a friend not told me!

And trying a new pain med with a histamine, lowest dose dilaudid so far so good, but about knocks me out, but is keeping the edge off the pain for sure...but the injections into the spasms helped the most!

More, but so far good getting it done! And most of the numbness has subsided today and tonight, think because of the cortisone injections, could of taken the swelling away from the nerves?? Don't know but can almost feel all teeth again, left leg still half numb, but not as bad as it was.

And for anyone with back problems I highly recommend looking into OMM specialist, mine has saved me from so much pain! Wish I knew more about that specialty many years ago, but glad now!

Will let you know what I find out from new doc, praying it is better than what is being offered

[Maria]

So glad you got the insurance stuff straightened out and your wonderful GP got a rush referral for you to specialist at UCSF!!! Also glad to read that you got some relief re pain and symptoms caused by whatever is going on..

I had a busy day yesterday or at least beginning as I took my Mitsubishi Montero Limited in for bumper repair at body shop and went to car rental place. They didn't reserve the vehicle I asked for (type) so all that were left were a few big sedans which I don't feel comfortable driving, a bunch of small little bucket seaters that would kill my back and then a Mercedes C250 and that's what I took even though it's much more $ than I was planning on spending. Sure is a dream to drive though after my Mitsu! So smooth and visibility is great though I don't like being so low .. that feels really weird (I sit up high in the Mitsu).

I posted on FB about my dog's childhood mini schnau buddy that was being treated for the same condition as Lola (my dog) which is congestive heart failure... he started treatment a month after Lola and was on the same drugs as she is now and he was a year younger than her. He was laid to rest 1/25/14 and I mean I cried and cried ... his owner is devastated as any good loving pet owner would be. I know this is my dogs fate as well so of course it hit even harder.

Well I slept quite a bit yesterday so today if my feet are permitting (still flared up with the condition I have bilat) I will try to get something done. Bare minimum I have to take Alaska for her fluids at the Vet's and I'm interested to see if she meows less riding in the Mercedes re the smoother ride vs. the Mitsu.

Ok take care and please keep us updated on what's the haps with your referral!

BTW what's an OMM?

[the_aborigine]

just posted this to my thread, figured I'd post it here, I have gotten results with SpineMED, none surgical disc decompression.

all the best,

[PepsiDoodles]

will look at the spinemed link thank you!

The OMM, Osteopathic Manipulative Medicine, a doctor who specializes in putting your bones into the right place and order, like when the spasms pull my ribs out, she moves them back into place, and same with hips for sciatic nerve and lower and mid back problems all mostly due to the spasms.....about 6 months ago my lower back went out so bad I could not stand or walk nothing, went to ER called her, she is also my GP, and she said when done there to come by her office so I did..good thing to! She worked on my spine for about an hour moving the bones with small movement (wish I knew how to do it on myself) but by the time she was done I could stand and walk, was still tender, but was fine in 3 days back to normal...and why has NO doctor EVER mentioned OMM treatment all these years is beyond me! Ask your GP for a referral to one, I get aligned every 2 weeks weather I need it or not, but when ribs go out a few times a week from spasms, she fits me right in......was odd, the apt before yesterday with her 2 days before Christmas, she said then I will be needing surgery as the spasms were so bad constantly, she said they are never like that unless the nerves are being cut off in a bad way and it usually indicates surgery needs to be done,,told her she was right, and she busted her tail on everything that needed to be done on her end as far as referrals and cardio work up and so on...she is 1 in a million! Am blessed she is my GP for sure! But yes, for anyone with back spine problems I highly recommend talk to your GP about the option of seeing an OMM doc!

[Maria]

I'm used to them being called D.O. doctor of Osteopathic medicine and I worked with at a hospital here that had a large number of them doing clinical hours (about half DOs and half MDs)... and have had several DO's. In fact while I was working there I used to get manipulated on a regular basis each week.. sometimes every day even!

Yeah.. the ones that are really gifted are incredible and then there are those that while they catch the theory aren't good at the practice or nothing to write home about.

I actually had a PT that was the absolute best at manipulation that I've ever encountered.. he was so gifted it was incredible. I credit him for helping me get over a lot of my chronic pain stuff from my failed '92 surgery and also helping me out incredibly during my worst migraine phase (began when I was 47 I think).

Anyway I think we're talking about the same specialty. I didn't really know about DOs either until I got the job at this hospital clinic and that was back in 1990 or so.

[PepsiDoodles]

Yes, a DO is also same specialty but they need to specialize in the (forget the name right now) structure of the bones and spine, yes most do not make that their priority, but the ones who do will have a special OMM certification...yes best ever treatment, I never knew they could do that,,,,if I had would of had a long time ago like in the 90's lol!!! Wish I could marry one lol!!! At home care daily at it's finest lol!!

Been having a rough time getting used to the diluaded , great for the pain, but knocks me out, getting more rest than have in over a year! Bags under eyes almost gone but don't like to stay this way day after day, but think the idea is to keep me from doing much anyway, so will keep on it as missed a dose today and the joy of the pain spiked in full force, crazy how much we live with, and when we get relief, then if you miss a dose, I am like omg how was I living with this day after day with just Tylenol,,,,guess I built up a tolerance to the pain, don't know?

But I did read the worst cases for the most part are where the patient will have mild pain, until later stages

[PepsiDoodles]

for the migraines I used to get botox in 2005, worked great for 4 mo at a time, asked doc about it now, he said wait till after the surgery then might be an option, said they might not be as bad once decompressed, but if I still have them from the srynx, then he would order them, but also know of a few friends on the ASAP.org forum who have my condition and they get them into their spasms and have had great success!

[Maria]

I only had that after my first back surgery when I was hospitalized and yes it made me very tired and I would sleep as was intended when trying to recover enough to leave the hospital. That was back in the day when a person was actually hospitalized an appropriate time for the magnitude of surgery or condition they had and weren't released until they could get about Ok without threat of serious repercussions from said surgery. Remember those days?

Now it's ridiculous that people are hospitalized for such short times after some super involved surgeries only to prematurely released unable to take care of themselves and without adequate home preparation often and return to the hospital shortly thereafter in emergency status due to complications.

Health"CARE" my a**.. should be HealthSCARE

[PepsiDoodles]

I could not agree more, and yes, I do remember the days when you had any invasive surgery, you were there for a while! He said I would be there a week and a half 2 weeks max,,,was surprised he said that long!
Am anxious to get this new opinion over with!
And I am sure the dose is to keep me from doing much, gee if I felt up to it I would clean my house that's for sure! But with all the strange pains, not doing much, lately the sciatic has been bugging me, but also, have the same type of pain running down the arm past 2 days on left side same side as leg, very annoying!

Need to get down to the SSA office and get some information from them, to hard to reach by phone, then home and bed again!

Have my release of information ready to fax to UCD so records can be sent to USCF....will be back later today!

[theBadCormorant]

Originally Posted by PepsiDoodles

Yes, love to cook! Might be my favorite hobby now in fact lol! Just have to pace myself though, like make a pie crust 1 day, then the filling the next then on day 3 it goes to the oven, but so worth it

It is amazing what you can achieve if you pace yourself with just a little bit everyday. I have started to landscape the back garden, seriously, I have started to landscape the garden, I do two or three, twenty minute sessions a day, often just crawling around on the ground (lately I have been more on my feet) It is difficult to tell the difference from day to day if I have achieved anything at all - my wife thinks I am insane, but 4 months in, I have built a fence and a path, I sometimes look at it and think 'surely I couldn't have done that'
Nothing is ever impossible as someone once told me.

Originally Posted by Maria

, a bunch of small little bucket seaters that would kill my back and then a Mercedes C250 and that's what I took even though it's much more $ than I was planning on spending. Sure is a dream to drive though after my Mitsu! So smooth and visibility is great though I don't like being so low .. that feels really weird (I sit up high in the Mitsu).

That is what my wife drives, or at least hers is the C220 diesel - I found it horrendous to sit in for about a year until my ruptured disc last summer, and then totally impossible, however since I have started to recover I now find the car very comfortable - interesting how stuff must move about in the spine and depending on how it is impinging on a nerve either allows or disallows all manner of stuff.

Originally Posted by PepsiDoodles

for the migraines I used to get botox in 2005, worked great for 4 mo at a time, asked doc about it now, he said wait till after the surgery then might be an option, said they might not be as bad once decompressed, but if I still have them from the srynx, then he would order them, but also know of a few friends on the ASAP.org forum who have my condition and they get them into their spasms and have had great success!

How interesting that this decidedly odd and dubious cosmetic medicine has produced such a worthwhile side-effect. Presumably they must still inject it into the muscle, but for headaches where do they inject it ?

Have you / they decided on what operation you will have, is it still the fusion? and any dates yet?

[PepsiDoodles]

Hi, no dates yet, waiting for UCSF to call anytime, just found out it was approved by insurance and I faxed all release info to UCD doc to send them that they have,,just got in the door, had more do do, but bad pain day, sciatic nerve bad all night and today, but have the same pain in arm, if there is such a thing? Feels like sciatic going from shoulder to finger tips along outside part of arm like on leg, can't stand it, just took my med pill, hope it cuts it fast,,,,,went to long today without taking it, hate taking any kind of pain med while trying to get things, legal type things done....

Wish I could crawl on the ground right now my yard is such a mess! Needs it all done, last year before my condition took over in a major way, I trimmed the trees and did it all, love yard work, and tried to grow tomatoes, even though they were the best tasting batch ever, were very hard for me to just get out to water, and the snails sure did like them to! lol You have done allot with your yard it sounds like, it feels so good to be able to accomplish little things anymore!!

After I finished faxing, made the mistake of going into a little consignment shop while waiting for the bus, saw the cutest pair of boots,,,should of tried them on then, great price to and soft leather...was trying to justify spending the money as an early birthday present to myself lol! Might go back there tomorrow, least if the surgery goes well I can look forward to wearing them lol

Have most apts lined up for next week, just waiting on UCSF, on pins and needles as my surgeon is now out of the country! And should anything happen I don't want an emergency surgery done by just anyone nervous, stressed, having anxiety about all of it right now!

Just praying they have a better option and less invasive, or something better to offer me..got the insurance straightened out today finally! So that will free me up in many ways now, was on wrong plan an so on,,,but glad got that done!

Trying to get all my bills set up for auto payment so if am unable to do much after surgery, will not have to worry about any of it....found out I qualify for a new free fancy phone upgrade to a smartphone, will hold off on that till surgery is over as I am not smart enough yet lol

Other than that crazy busy week, yesterday first day this week was able to do nothing much of anything, would like to of done the same today, but no time to hurt right now..to much pressing and no one to help makes it even harder.

Did talk to a friend down south of me in So CA, she has had pretty close to what I am having, she had her c2 to c6 done with 4 complete disc replacements and laminectomy also, but has full range of motion and is doing great! So that gives me hope! And her dysphasia was as bad as mine also...funny,,I never knew she had been through this!!!! Until I mentioned it to her, and she did not mention it until the other day when she called, she said it was a hard recovery she is still recovering from it, almost 2 yr post op, but said to try to see if surgeon will do more total disc replacements vrs fusions so will be able to eat and have full range of motion as well she said the dysphasia will improve also.......she said the benefits outweigh the full fusion for quality of life..and I agree!! So praying this new surgeon has a heart of gold and hands guided by God! Yes I am a firm believer in the power of the big man upstairs!

I looked at the spinemed, it might be something to have done post op, I could see how it could compliment the healing process as long as disc is fully replaced with no hardware, but on another side, I could use it in my T spine and lumbar now or soon as am cleared post op...would like to avoid anymore spinal surgeries at any cost, as it scares me so bad, and this one really has scared me to death!

I have given up on my car situation for the time being, will wait to see if I am alive and able to drive again before doing anything about it at this time...reason is, in the past 2 yrs, had 2 nice BMW's one 530i and a 740il, both newer very nicely loaded and a Mercedes SUV, ALL 3, one after another spaced a few months apart, transmissions went then engine seals, head blown in the 740, and the SUV same problem, so bought a nice used Subaru Forester, loved it! Space of an SUV, easy to drive like a car...then the cat converter went fixed that, drove for maybe 2 days and pistons went, so it is now sitting in the garage collecting dust since October lol!

But the worst part, I spend $5.00 more a month on a bus pass than I spent for gas in a month lol!

Very hard to get around to get food and things as am not to lift anything over a pound and so on till this spine thing is fixed! Makes life difficult right now for sure, but neighbors have helped when they are around! Waiting to get approved for ParaTransit, should know by Monday, then they will pick me up at my door take me to doctors and grocery shopping and assist with bags and all, so praying I am approved, will need it now and after surgery for sure!

Still waiting for pain doc to call, asked if he could lower my dose of diluadid, the 2 mg knocks me out! But tolerating it so far so that is a good thing and better than Tylenol for the pain, but would like to be on the lowest dose can get by with, can handle a little pain, heck been handling tons of it, so a little will be ok, but like to be more "with it" rather than feeling comatosed lol

Back to the phone, will be online later!!!

[Maria]

I think there is a limit on the number of ADRs that can be done here in the US re FDA approval however not sure about that. I hope whomever you'll be seeing at UCSF will have experience with ADRs as well as fusion and that you will be a candidate for this type of surgery maybe at least partially if not fully.

There's always the option of going abroad/other country that offers more options in types of surgery or approved hardware to utilize if you've the $ for surgery (where the FDA doesn't exist).

I think it's wise that you're not doing too much physically or at least anymore than you are doing which sounds like plenty to me.

I'm finding that the Mercedes is a very smooth ride for my back, no problem at all however I am experiencing more posterior tibial tendonitis pain using the gas/brake in this vehicle than my Mitsu. Also while I love the smooth ride very much I really dislike being so low to the ground and also hate that bigger vehicles keep crawling up my backside it seems. At least in my SUV when a big SUV is behind me it doesn't bother me because if they get too close I slow down even more as if to say ~ go ahead and run into that nice big fat tire on the back of my car.. will leave a nice impression on your front end!

I don't like driving that much though because of my feet there's no way I could get around without a car now. Well I could but I'd be so limited at what I could do or get done in one day! Not like I haven't experienced that with my back stuff in the past as well!

I use a cart to haul stuff back and forth from my car. I find that I end up loading that up so much that I really poop myself out emptying it out!

Vons delivers though I like to get fresh veggies from places like Farmers Markets and Sprouts/Henrys or lastly Whole Foods (more expensive). Good little Mexican markets often have way better produce prices though I haven't located one close by to where I'm living right now so for what I spend in gas in the SUV makes it acceptable to spend a bit more in local produce shopping.

Must be great to have one's own veggie garden (though then again it's more work)

I think my back is telling me to get up and out of a sitting position~ take care and hope you're getting some good zz's and rest!

[Ringo]

I believe it is very positive sign for significant cord compression. I believe it is the line in the sand that says it is time to do something. You sound like you are in good hands. Just need to know how they will manage your pain or what the plan is.

My heart goes out to you. I am sorry you don't have someone close by. Maybe someone on the board that lives close by can hang out with you. I would But I am pretty far away.

You hang in there and I will keep you close in my heart.

Terry

Originally Posted by PepsiDoodles

still looking into why the middle finger flick test is so important, as he made such a big deal out of that

[Ringo]

Hang in there, I will tell my family and we will be thinking about you. Peace! Terry

Originally Posted by PepsiDoodles

had one beer, but still just overwhelmed by it all