out of the hospital after a week!!!!

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finallyreallycrazy
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 5/12/2010 11:04 PM (GMT -7)   
After my doc sent me to a Neurologist, after about 10 minutes in her office, she politely asked me if I would mind staying at the hospital for a few days so she could do some testing since I ceould not even close my eyes nd still stand up!  She rolled this pokey thing up and down my legs telling my to let her know when I could feel the sharpness....I never did.  She kept looking at my funny and shaking her head.  She said that she really didn't think it is MS she said she was leaning more toward Lupus.  (I guess I should have told you that this appointment was scheduled for a full neurological eval because I have started falling at least 3 or 4 times a week.   Anyway, I was admitted, and immediately was taken to have new MRI's done. Then, the glucose testing (still hypoglaucemic), 24 hour EMG (lots of fun, 26 electrodes glued, yes glued to my head, and stuck in the bed at the hopsital for a minimum of 24 hours with the exception of bathroom, breaks, and tons of lab work.....I was starting to think if Iwas going to even have enough blood left in me to survive!!!  lol.  After the results were in, she immediately sent a referral to a Neurosurgeon to come to the hospital to visit with me about possible surgeries.  According to the MRI's, the top of my neck curves backward, and from there down it only goes downhill.  From the tip of my spine to the end of my tailbone, I have 3 whole vertebrae that do not have some kind of damage.  Some of it is compression, bulging, recessed, and scoliosis.  What the biggest concern was, was that they found 3 different areas in my spine that have moderate to severe sponsis.  One of those is very severe.  The bad news is that my nerves are so impinged that the Neurosurgeon said the day WILL come that I will loose the ability to even walk.  He said he could fix it, but because of the DJD, DDD, Osteoporosis and Osteoarthritis, that once I start surgery, I can plan on having to have it redone about every 3 years.  I know this is long, but have any of you heard these  same things?  If so, what did you do?  I am 36 and at a loss.....HELP idea idea
4 bulging discs in my neck, 3 in my lower back, severe neuropathy, fibromyalgia, cfs, degenerative bone disease, HORRIBLE memory problems, anxiety, and depression, and muscle cramps that don't stop.
 
Meds:  Oxycontin 60mg 2x day, effexor xr 300mg 1xday, robaxian 3xday, Valium 10mg 3xday, Lortab 10mg 4xday, Phenergan PRN
 
 
 


MsBunky
Veteran Member


Date Joined Jan 2010
Total Posts : 1097
   Posted 5/13/2010 7:04 AM (GMT -7)   
Hi there,

Welcome to HW forums...I think you'll find it an understanding and helpful group.

I don't have any of the issues you're describing, but it sounds like you have a pretty good doctor there. Is he recommending the surgery now, or are there other alternatives you can try instead? If he's leaning towards surgery, I would get a second opinion, just to be sure as it sounds like there's a lot of stuff happening in your body.

Other questions I would be asking would include whether you would get significant pain relief after surgery or just moderate, how long you would have to be in hospital and how long would it take for you to heal completely. How long would you be doing rehab afterwards (or would there be any after surgery treatment needed).

It sounds like the doctor is offering you a pretty good chance of feeling much better after the surgery, but if that means more surgery every 3 years then you have to weigh that against living like you are for the next 1, 4, 8, 20 years, etc. Personally, if I were in your shoes and had to make this choice, I would go for the surgery.

I hope things work out well for you. Please keep posting so we know how you're doing.

hugs,
Pam
Conditions: Fibromyalgia, Myofascial Pain, Chronic Pelvic Pain (with permanent muscle damage), Femoralacetabular Impingement (CAM and Pincer), Reynauds, IBS, Surgical Adhesions, Ophthalmic Migraines, Severe Hot Flashes (both Surgical Menopause and medication related), plus physically unable to vomit due to the Nissen, and I have extremely tiny veins with a lot of scar tissue...a joy when it comes to having to give blood or get an IV started

Surgeries: Appendix, Uterus, Nissen Fundoplication for GERD, Left Ovary, Gallbladder, Right Ovary, TVT

Medications: Oxycontin, Cesamet, Tramacet, Cymbalta, Flexeril and Clonidine plus Laxaday, Vitamin D and a Multi-Vitamin daily


finallyreallycrazy
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 5/13/2010 8:36 AM (GMT -7)   
I go back to the Neurologist next week or a nerve test of some kind on my back and my legs. Then they will know how much damage is already done and how successful the surgery will really be. My lab work came back pretty much in the norm, excemp my Lymph#. It was high. My Lymph% was almost high, but I dont know what the Lymph# means. Almost all of my lab work borderlined on high or low if you look at the range. I am Calcium, iron, B12, and B6 deficient. I guess pretty much my body is all out of whack and I don't know what all they are going to have to do to get it back where it needs to be. I am just so stressed out about it and hurting so bad that I am having a personal pity party. I see my Primary Doc tomorrow so he can see all of my results, but I figure I am in for a long painful journey. I know I have to be positive, but sometimes it seems useless
4 bulging discs in my neck, 3 in my lower back, severe neuropathy, fibromyalgia, cfs, degenerative bone disease, HORRIBLE memory problems, anxiety, and depression, and muscle cramps that don't stop.
 
Meds:  Oxycontin 60mg 2x day, effexor xr 300mg 1xday, robaxian 3xday, Valium 10mg 3xday, Lortab 10mg 4xday, Phenergan PRN
 
 
 


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 5/13/2010 8:53 AM (GMT -7)   
Well, at least this doctor told you that once you start surgery, you'll need to have more...I've had friends say
that once surgery always surgery..Seems like you got a very very big and hard decision....and that
I'll keep you in my thoughts and prayers...others will be by with better advise, Scraming Eagle just had a fusion in February.
((((((((((((((((((((((((((((((((((((finallyreallycrazy)))))))))))))))))))))))))))))))))))))))))))))))))))))))
keep us posted, will be thinking of you...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


kimber9807
Regular Member


Date Joined Jan 2010
Total Posts : 492
   Posted 5/13/2010 1:21 PM (GMT -7)   
I will keep you in my thoughts and prayers. ((((hugs)))) I was told also I needed back surgery but so far opted out. I was also told once you have back surgery you need to keep having it done every few years. Good Luck with ever decision you make.
im dxed with  herniated discs,fibromylagia , scolosis,ddd,athritis, spinal stenosis , spinal blockage ,gerd,gastric ulcer (2008), pernicous anemia , folic acid anemia and gallbladder removal 3/23/10.
 
meds: Ambien, prilosec otc,  ibuprofren,Ultracet, folic acid , b12 injections, zyrtec and benadryl.
 
Just added : folic acid supplement  1 mg a day for the next year and also b12 injections increased to once a month. pernicous anemia and  Folic acid anemia.


momtofourangels
Veteran Member


Date Joined Apr 2010
Total Posts : 2261
   Posted 5/13/2010 2:03 PM (GMT -7)   
Welcome to the forum.  I'm sorry you're in so much pain and that your back is so bad.  I wish you luck with whatever you decide about the surgery.  ((((((((((((((((((hugs))))))))))))))))))
 
Loretta
Dx:  ddd, spinal stenosis, bone spurs, hypothyroidism, typeII diabetes, asthma, allergies, high blood pressure, polycystic ovary syndrome, PTSD, depression, anxiety


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 5/13/2010 3:09 PM (GMT -7)   
finallyreallycrazy

Welcome to Healing Well Chronic Pain Forum! You definitely have some bad problems with your spine! It just about sounds like you don't have much of a choice about having at least some surgery! I have had two disk fusions already with the last one being last September. They have all been in my neck at first C-6/7 and then last fall C-5/6. It looks like I might have to have another ACDF coming up pretty soon! I also have bad thoracic disk and lumbar! You know I was in my 30's when I had my first fusion. I am also on Oxycontin for pain and Baclofen for spasms. I understand at least a little what you are going through, it can seem over whelming and frightening. It appears that you have some major decisions to make. Well we can't do that for you, but I do want you to know that you are not alone in this! And although my situation is not any where close to being a bad as yours, there are some major similarities, and I definitely can relate! For me the surgery removed the pain that it was suppose to remove. Last year I had severe left arm pain! The pain would wake me up, and it would prevent me from going to sleep. I had the ACDF in the morning that afternoon, the arm pain was completely gone! As for your question yes your surgeon was right you could very well lose the use of you legs, and the surgery can prevent that from happening, a degenerating spine continues to get worse there is no cure, they can only treat it and fix the damage as it occurs. I am in the same boat! Without the surgery I could lose the use of my arms, so I had the surgery. The first time I had the surgery ( back in 1985) I had no choice, I was extremely lucky that I was not a quadriplegic and it was emergency surgery! Anyway yes I have heard of all these things and allot of us here at this form are living with them!

Anyway just know that I am here along with the rest of the members of our family at this forum, to listen and lend you my ears, so please feel free to vent your frustrations, we all have them! We also to give you our understanding and support! I think you will find that there are some of the most compassionate and caring people on this forum that you will find anywhere on the internet!

You are not alone in this any longer! Again Welcome to out CP family!

White Beard

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/13/2010 7:18 PM (GMT -7)   
Hello Finally,
 
Well, you do have a lot on your plate right now for sure. Some of the things you mentioned I have not heard of "sponsis" not sure what that one is. From what I am gathering you have a lot of nerve involvement going on and if it is as severe as what the drs ar saying, surgery most likely is your only option. Once those nerves becomed pinched or compressed the only way to correct some of the problem is to relieve the pressure on the nerve. The surgery does not involve surgery on the nerve itself, it is to take away or trim away whatever is causing the nerve problem. The nerves are a very intricate part of the body, meaning after surgery it will take a good deal of time for the nerve to heal and they do have to heal on their own. The surgery may or may not decrease your pain, no dr can guarantee that 100%. But, to leave a nerve compressed can lead to irreversible permanent nerve damage. Many times when caught early on surgery can help a great deal.  For some people they do end up having more than one surgery but sometimes you never know, it just depends on so many factors. Your best bet is to get a second opinion with another excellent neurosurgeon and take it from there. I would suggest you get online to some place like SpineUniverse.com and educate yourself of your condition.  
 
When you speak with your PCP if you feel depression is creeping in, by all means discuss this with your PCP and perhaps he/she can rx you something to help you out. Many of us that deal with CP are on medication for depression, the two seem to go hand in hand. You have a lot to deal with and a lot to think about and you need to be as level headed as you can be about your decisions.
 
WhiteBeard gave you some excellent information about his surgeries and I am very glad he posted to you. You must keep in mind that the vast majority of the members on here that have had surgery, for some reason or another apparently did not have the outcome that they had hoped for, so you will not get many glowing reports of how well they did or how well they feel. Please keep this in mind. I do know some drs will allow a patient to speak with another patient about a surgery that he or she has had done. Usually, the patient has to agree to speak with you. If this is something you may be interested in, by all means talk to your dr. Another thing I have seen before too, is talking to too many different people about surgery of any kind can scare the daylights out of you by the time they get done telling their tale, so keep this in mind. I went through this when I had a hysterectomy and let me tell you, I wished I had just kept my mouth shut because I was so terrified by the time the surgery date rolled around till it was pathetic. I would have been much better off not talking about it so freely. And as it turned out, yes I had some pretty severe complications after surgery and we were given a scare, but it was not near as bad as what I had it in my head to be. Some people mean well, but they can also get carried away with their own tales too. lol.\\
 
Please let us know how your appt goes with your PCP and please take care of yourself.
 

crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


finallyreallycrazy
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 5/14/2010 12:34 PM (GMT -7)   
I just got home from my appt with my pcp and after he read my new MRI results, he just kind of sat there, almost with tears in his eyes and said "I knew your neck was pretty bad, but I never imagined your back was in this bad of a condition." As he wrote my scripts, he asked me at least 3 times if the meds he has me on are helping. He said that as soon as they stopped controlling the pain to where I am able to tolerate it to let him know immediately and he will make the appropriate changes. He told me that if I wait too long I will not be able to walk, but that he would wait until I cannot stand the pain anymore, mostly because some of my vertabrae are literally desinigrating and it would definately lead to fairly frequent major surgeries. He told me that I am no longer to walk without a cane or walker. I got a cane at the pharmacy today, and if I end up with a walker, I want one with the seat on it so I can sit if i need to. One thing that I love about my pcp is that he is so understanding! I have my nerve conduction test next Friday with the Neuro, so maybe she will have a little more to go on. I really appreciate all your responses, I just don't know how to feel right now. I knew something was wrong and I was so afraid I had Lupus or MS as those run in my family, but the positively ruled those out which was a relief, but then they thew this at me and I just don't know how to act or what to expect. Part of me is mad, part scared, but I am trying to keep a positive attitude, and thy at in itself is wearing me out! THANK YOU all for your support. My husband is trying so hard to be understanding and supportive, but I can tell it is scaring the crap out of him too.
4 bulging discs in my neck, 3 in my lower back, severe neuropathy, fibromyalgia, cfs, degenerative bone disease, HORRIBLE memory problems, anxiety, and depression, and muscle cramps that don't stop.
 
Meds:  Oxycontin 60mg 2x day, effexor xr 300mg 1xday, robaxian 3xday, Valium 10mg 3xday, Lortab 10mg 4xday, Phenergan PRN
 
 
 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 5/14/2010 3:27 PM (GMT -7)   
finallyreallycrazy


Well at least you have been given a cause for your problems, and it is a difficult one at best, but as bad as it might seem, it of course, could have been worse! I am not sure how this is going to sound, but one thing that I have found some what comforting, and puts things more into proper perspective for me, is coming to this forum! One of the reasons, is when I think I have it so bad, and I am really down, when I come here, and see what condition so many other are in here at this forum, and I see how bad off many of the members of this forum are. .........Well it humbles me,........ and it it makes me realize as bad as I think I have it,..... there are others right here on this forum that have it much, much, much worse off than me! And although I feel bad for those other members, I also feel very very lucky and fortunate, that I am in the shape I am! That truely is a blessing!



What really makes this forum special is, no matter how bad the members of this forum have it, they are away here helping and caring for others! That says allot about the people here! I know that, even for myself, I fine that helping and caring for others, is therapeutic for me, it helps me, it put things into perspective, it makes me want to help others even more!! I hope that makes sense!



Anyway the EMG test will help the Doctors determine the amount of damage there is to the nerves. All these test help give the Doctors a more complete picture as to what needs to be done, and how soon. The one thing you want to remember to is that you do not want to wait till the damage is so bad, that surgery will not help it. So please be careful!



You have every right to be mad, and scared, it is scary to have this type of thing! But you are with good company here! I hope you continue to post and let us know how you are doing! And of course posting to help others, by giving them encouragement and support! We all help each other!



I am glad you got some answers, even it wasn't quite the ones you were hoping for! At least you know what you are dealing with!



Good Luck to YOU!!



White Beard

finallyreallycrazy
Regular Member


Date Joined Mar 2010
Total Posts : 105
   Posted 5/14/2010 4:40 PM (GMT -7)   
I can see how this forum can be helpful and supportive. Just the answers and the supportive replies from just this one post tells me that it doesn't matter if you are the newbie or not, everyone seems to be there for the rest of the members. I am trying so hard not to have my own little pitty party right now, and some of the responses have helped me have a more positive attitude. After I get my EMG next Friday,
I should have enough information to know better which decision I need to make. Question though...is the sugery to repair spinal stenosis a spinal fusion or something different? As they say, there is more than one way to skin a cat, is this type of surgeruy like that or are there more options for treatment options?
4 bulging discs in my neck, 3 in my lower back, severe neuropathy, fibromyalgia, cfs, degenerative bone disease, HORRIBLE memory problems, anxiety, and depression, and muscle cramps that don't stop.
 
Meds:  Oxycontin 60mg 2x day, effexor xr 300mg 1xday, robaxian 3xday, Valium 10mg 3xday, Lortab 10mg 4xday, Phenergan PRN
 
 
 


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3609
   Posted 5/14/2010 7:33 PM (GMT -7)   
finallyreallycrazy
Depending on what is exactly wrong, sometimes they will go in and take only a small portion of the disk ( the part that is encroaching on the nerve and that is it! other times they will do a complete diskectomy taking out the whole disk out and replace with donor bone or your own, which fuses the vertebra above and below where the disk was all together. This is a Diskectomy and fusion, sometimes they will just go in a take some of the bone out to make room for the spinal nerve roots, I think that is call a laminectomy, and leave the disk alone, an if it is bad they will often do the diskectomy and fusion and also the laminectomy. It will all depend on what all is wrong, most surgeons will only do what is needed and make it the easiest on the patient! The disk can bulge herniate and press into the spinal cord, or it can bulge and herniate on either one side or the other or both and press or impinge on the nerve roots that exits the spinal cord. Often when that happens you don't feel pain in the back as much as in the limb that that nerve root innervates. When I had problems with my disk in my neck,, I did not feel so much pain in my neck from that impinged nerve root, but I felt like I had hit my crazy bone really hard and my hand ached and burned like crazy! The pain was in the arm and hand but the damage was up in my vertebra in my neck!

I don't envy you your decision, but do your homework and learn as much as you can about this problem. I think allot of it is just going to depend on how much this affects you and amout of pain that you have.

Anyway I do wish you luck with this!



White Beard

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/14/2010 9:52 PM (GMT -7)   
Hi!

And I also want to welcome you to the Chronic Pain Family! As you've already seen, this is a wonderful bunch of folks here and we stand beside each other through whatever the troubles are. I agree with WB, at least you know what you are fighting instead of being in the dark. You are blessed with a wonderful PCP and that's the most important part of the entire process, IMHO. I also have a great doc.

I don't think I have any more to offer than has already been said since I've not had this surgery. I do have a collapses disk that pinches the nerves that go down my legs but no where as miserable as you have. I will pray that you get some resolution soon.

Hugs,
Chutz
Gravitation is not responsible for people falling in love.
Albert Einstein

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


flower123
Veteran Member


Date Joined Apr 2009
Total Posts : 856
   Posted 5/15/2010 1:39 AM (GMT -7)   
Finally,

Hi. I am just popping in to say welcome!

Flower
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