Don't know what to do now?

[JustLee34]

I had back surgery about a year ago and ever since then I have had trouble. I had a Harrington rod removed and had some discs repaired. I called the Dr. who did the surgery today and was told he was no longer seeing scoliosis patients. :( The bad thing about it is, while he was on vacation I had to see two other Drs. They said they did not want to touch my back. This upsets me so much. I feel like my spine is trying to push out of my back and my shoulders are continuing to be lopsided. I know I'm going to need more surgery. I hope I can find a new Dr to help me get the pain down some and to stabalize my spine and shoulders. I know I will never be pain free, but less pain than what I am in now will help tremendously. Any suggestions will greatly help. :confused: thanks

[LindaRacine]

Hi...

If there's any chance you can get to St. Louis, I'd bet that Keith Bridwell would be able to help. It can be difficult finding a surgeon who has a lot of experience in treating people with prior scoliosis fusions.

--Linda

[JustLee34]

I've called my insurance company (last week) and was told they wouldn't cover me having the surgery in St. Louis. I have Pacificare. Today, I saw my PCP and he told me he really felt that if the Dr. in St. Louis was the only Dr. who would be able to help me,,,he felt my insurance would take care of it. Turns out my PCP was able to get my surgeon to see me tomorrow....this is even after he claims he no longer sees scoliosis patients. I believe my surgeon will try to refer me out to someone else. Just don't know what to do. I saw a psychologist today because I'm experiencing depression because I can't work and because of the pain. Just don't know what to do now. :(

[krystal]

Hi,
I just read this topic and it brought back alot of thoughts about doctors and their obligations. When I tried to get in to see my surgeon as an adult they told me the doctor doesn't see adults. BUT if they do the surgery the HAVE to either see you or refer you. I called alot of people about this including the Department of Health here in FL. They can be sued for not seeing someone. Which maybe since you are suffering from a failed surgery seek the advice of a lawyer. They can tell you quickly what your rights are as a patient. I think it is nonsense for any doctor to not see there patients.

Also I thought if I get turned down by one more doctor, I am going to the emergency room and I will refuse to leave until I either get admitted or reffered to a ortho. Then they can't refuse me anymore. It is time that we start showing doctors are here to treat us for all different causes. They need to realize they should not have to be forced into taking us, but we can work around that too.

Don't give up. It will work itself out. I had to move to a different town to find better doctors. I am currently in the works to have the second surgery and have narrowed it down to three doctors. It took 2 years but I will soon go in and be on the road to recovery. Good Luck. Krystal

[JustLee34]

:cool: thanks for the reply. I was able to see my surgeon on Thursday of this week. He told me the reason he is not seeing scoliosis patients anymore is because he is going thru a rough time in his life right now. He went on to say that his brother had recently passed away and he is going thru a divorce. I suppose my back problems have to take the back-seat to his personal issues. :mad: But he did set me up with another physician in Midwest City, OK. I hope this physician is able to fix the problem. All I can do is hope and pray. But the fear of never being corrected scares me.

[LindaRacine]

I can't imagine why someone would want to see a doctor who states that s/he is no longer treating scoliosis patients. While it may not be convenient, it seems to me that one would be better off with a doctor who WANTS to treat patients.

--Linda

[JustLee34]

I just felt that my surgeon owed me an explanation. I feel he's responsible for my follow-up care, especially since it seems that this surgery was a mistake. :mad: The fact that he decided just in the last few weeks to no longer see scoliosis patients leaves me high and dry.

[JustLee34]

:mad: :mad: :mad: :mad:
Went to another Dr. and he told me that it is hard to believe that my
shoulders haven't also been lopsided. Even though I told him that they
weren't. I told this DR that my shoulders have gotten a whole lot worse
since my last surgery in June 2005. He than proceeded to tell me that
everyone with scoliosis has uneven shoulders and that the surgery which
removied my Harrington rod had nothing to do with it. But I know that
before my surgery I had level shoulders and my upper back did not hurt as
bad as it does now. I felt like this new Dr thinks this problem is all in
my head. And I know different !!! I know my body and I know that my
shoulders were pretty even until I had this last surgery. Has anybody
ever had a DR make them fell really bad about themselves? It just upsets
me to know that this DR made me feel this way.

[LindaRacine]

Hi JustLee...

Maybe you need to get a second opinion. Uneven shoulders are usually a pain response. (You hold your high shoulder like that because it's less painful.) If you have more pain since the surgery to remove your implants (beyond the typical short-term surgery pain), it's possible that you have an area that isn't fused.

Regards,
Linda

[krystal]

Hi,
i am sorry to hear how the doctors keep coming up short for you. I finally found a doctor that has the ability to read an xray by himself. He pointed out something to me that I over look alot. I am so tense that I make myself hurt. I think I start to hurt and then get muscle spasms from being so afraid to let my arm hang or to misstep and hurt my lower back. Which by the way after 10 doctors I have tried to tell this to, my disc is gone in the lower vertabrae. I knew it. It is bone on bone. EEEwwwwwwww. I hate the sound. :eek: But Lee I have gone to alot of doctors to find ONE that has experience. I refused to give up and moved two times to find this one. Keep looking you will find one. I have been told I was faking it, I am depressed, I have fibromyalgia, I was also told I am trying to get pills to sell. I have heard it all. The funny thing is I don't ask for any pills ever. I suffer silently just so I didn't have to hear those things said. It crushes me to know how uncaring doctors can be, but rest assured there is one out there. Dr. Flynn Jr. will do the surgery I need to have done. spinedoctors.com check them out. Keep trying and keep the faith. Krystal

[sweetness514]

Wow, some doctors are really cold. :mad:

The doctor that operated me was really good, but had NO bedside manners whatsoever, he reminded me of a nazi. All he could repeat was "pain is pain"... :rolleyes:

After a few years of having the surgeries done, I switched to another one(who is my ortho now), and was pleasantly surprised when he actually took the time to explain how exercises, and acupuncture can help, besides prescribing pills that I hardly ever took. But ever since last year when my rod broke, he is disappointing me. First he gave me Vioxx for over three months and THANK GOD it was taken off the market as I nearly had heart attacks many times. Couldn't function anymore, and of course he said that he didn't believe Vioxx was bad. Then he prescribed Bextra that I did NOT use since it's from the same family of Vioxx and trusted MY instincts, not his. When he talks to me, he does explain everything but in a complicated medical terms, and he doesn't like that I was mad that they took a year to see that I had a broken rod and didn't believe that I knew it must be that. He has an ego.

Anyways, I understand what some of us feel regarding them and will see another one.

[Irene]

Hi...

If there's any chance you can get to St. Louis, I'd bet that Keith Bridwell would be able to help. It can be difficult finding a surgeon who has a lot of experience in treating people with prior scoliosis fusions.
--Linda
Hey Linda....!
My name is Irene Wilkey... It's been a long time since I've been here in this Forum... Hello to everyone...! ~ Linda, I live in Southern Illinois, and I had my surgery 3 years ago by Dr. Keith Bridwell's partner, Dr. Lawrence Lenke. I'm still going crazy with that terrible "crushing" sensation ~ I can't get anyone to understand... I went for my 3-year post op exam yesterday, (May 25, 2005), and when I told Dr. Lenke how much discomfort I'm in ...24 HOURS A DAY... guess what his reply was....! ~ He told me that none of his patients complain as much as I do!!!!!!! How do you like that??!!! That simply CAN'T be true!! ~ I am in the category of "I don't know what to do".... There are so many of us in that situation... How frustrating... I get myself through one day at a time by "reminding" myself of the fact that "paralyzed people" would give anything to feel my pain!!! UGH! I need to read "posts" in this Forum more often... At least I know I'm not alone.... Thanks! :)
God Bless us ALL!

[krystal]

I totally understand. After I had my second child the only thing that didn't give me problems was my scoliosis.
I was told by a primary care doctor that I went to was "I had a 70 year old with less problems than I do." I yelled and cussed him out with the worst language that has ever been spoken. Since then I have been afraid to tell doctors how I truly feel. At that time I really had alot of internal problems that was attributed to a high fever from mastitis and kidney stones, and gall stones. I wish the problem would have been in my head.

The doctors I have now see how bad my back is from looking at it on the outside and say the pain is legitament. I have lost the disk in the lower back and they hone in on that giving the problem. Truthfully the worst pain is in the neck from the disks bulging inward. I can hardly lift my arm to brush my hair. I had to stop seeing my chiropractor and I feel awful all the time.

I feel like I am nearly there, and hope the surgery cures some of the fatigue. I would like to stand up straight again.

[LindaRacine]

Hi Irene...

I think that what you were told by Dr. Lenke is totally inappropriate. Obviously, someone has to be the worst. I wonder if you need to be more specific about your pain so that he understands. Your description of "crushing feeling" is something I haven't heard before. Here are some elements of pain that might be helpful in really defining what you're feeling:

* Is your pain 24/7, or does it come and go. Do certain activities bring it on or make it go away?
* Where is the pain?
* Is the pain sharp, burning, dull?
* Do narcotics make the pain go away?

Perhaps others can step in with other descriptions that might help you define your pain.

I'm sorry that you're going through all of this.

Regards,
Linda

[Irene]

Hi Irene...

I think that what you were told by Dr. Lenke is totally inappropriate. Obviously, someone has to be the worst. I wonder if you need to be more specific about your pain so that he understands. Your description of "crushing feeling" is something I haven't heard before. Here are some elements of pain that might be helpful in really defining what you're feeling:

* Is your pain 24/7, or does it come and go. Do certain activities bring it on or make it go away?
* Where is the pain?
* Is the pain sharp, burning, dull?
* Do narcotics make the pain go away?

Perhaps others can step in with other descriptions that might help you define your pain.

I'm sorry that you're going through all of this.

Regards,
Linda
Wow, Linda... I can't believe you replied so quickly... thank you so much...
You've asked some very good questions. I should have stated that I get COMPLETE relief from all pain & discomfort when I'm laying down. That's because I don't have to fight gravity! That "crushing" sensation that I always feel while standing or sitting is kind of like a pressure build-up. I feel like my lower spine is in a vice. Something is "squeezing" me in there! The longer I must deal with gravity vertically, the more "pressure" I feel, which begins to hurt more and more. I've explained this to Dr. Lenke and he still says I'm the only one that complains about this. I simply don't believe it. There are other people just like me out there... suffering from the same type of post-surgical discomfort from all that inserted instrumentation into my spine and hips. I think the world of Dr. Lenke... I'm still better off because of the corrective surgery... I can breathe better and I can stand up much straighter and for longer periods of time. I had no idea that I would still be suffering this much 3 years after my surgery and I sincerely believe that Dr. Lenke has not been totally honest with me. It's quite a disappointment. ~
Yes, certain activities make it worse... anything "strenuous" ... even too much walking. Laying flat in bed makes all the pressure and pain go away completely. The worse part of my pain is about the size of a large dinner plate... all through the lumbar area. The pain varies from all 3 forms you mentioned... sharp, burning, and dull. It all depends on what I do physically. Narcotics just make me sleepy... Sure would love it if you could email me sometime... (ReenMommy@aol.com) ~ Perhaps you could give me some advice... Thanks so much, Linda!

[sweetness514]

I do get the weight sensation, but noticed that reinforcing the muscles in a mild way like swimming, light weight lifting and stretching helps. The first two years after surgery were the worst, and back then I didn't know it was normal and result of the fusion taking place, since the doctors told me that recovery was supposed to take three months... :rolleyes: I have a LOT of patience and all I want is for people to be frank with me and tell me what I have and if/when it will go away, what to do to help the pain, etc.

As for burning and sharp pain, I have that too mostly in the shoulders and arms, and occasionnally the sciatica. Those are nerves pinching and acupuncture does help. I never went back to my chiro after the surgeries, he told me not to and am too scared that he would misplace hardware. The pain is always worse has the day goes by and the more I do.

[LindaRacine]

Hi Irene...

I wonder if you're having muscle spasms. That's what it sort of sounds like.

My recommendation would be to write an unemotional letter to Dr. Lenke to see if you can get his attention. Or, what would happen if you tried to make an appointment with Dr. Bridwell? I think that Dr. Lenke deals more with kids than adults, so perhaps that's part of the problem. If he truly told you that none of his patients complain of pain, I'm sure he didn't mean it. Sometimes, just like in the rest of life, there are personality clashes that sort of get in the way of things.

Hope you get some help.

Regards,
Linda

[Irene]

Thanks for another quick response, Linda... It's not muscle spasms... It's the instrumentation. I can feel all that stuff inside of me. Maybe it's because I'm so thin. I don't know. I've thought about making an appointment with Dr. Bridwell, but they are partners... I don't know how he could give me an honest opinion if it conflicts with Dr. Lenke's. But I will really think about it again. It certainly wouldn't hurt just to meet with Dr. Bridwell and have a good chat! :)

[LindaRacine]

Hi Irene...

I've known others who have told me that it was always obvious that their implants were the cause of their pain. I wonder why the pain goes away when you lay down. Did you tell Dr. Lenke that that's what you think? (I ask because it wasn't at all clear to me until your last post.) Anyway, you should investigate having your implants removed. There are some potential risks, but many people say they're very happy that their implants were removed.

Regards,
Linda

[Jill K's Mom]

They will direct you to someone who will be happy to look at your back and to help you out, I promise. See my new thread for more details!

[Irene]

Linda, Krystal, and Sweetness514,
Thank you so much for your input. I really need to make myself stay in better touch with everyone here... It's a wonderful "support group", in my opinion.
Yes, Linda... I've told Dr. Lenke many times... One year ago he told me this: "You'll get used to it"...! Yesterday he told me that I'm the only one who complains so much! He was extremely nice about it... but I don't know how he kept a straight face. :confused: ~ I am fused from T11 down to S1, and he said that all the fusion areas around the rods are solid and he would not remove them; but he said he would be able to remove the balancing screws from each hip. He also told me that there was no guarantee that removing those screws would help much. Since I don't want anymore surgery right now, I will have to work on my pain management. I think the pain goes away when I lay down because much of the spine is like an accordion... (only vertical instead of horizontal!) - - When I stand up, the accordion closes; and when I lay down, the accordion opens up or releases. Hey, it sounds good! :D
"Sweetness"... Thank you also for your response. Strengthening our muscles is a good thing! My thighs are as solid as a rock from being very faithful to physical therapy, daily exercising and walking. It's much easier to stand up from a squatting position now! :)
Krystal... Thank you for sharing... I'm glad I'm not the only one who gets frustrated with "inappropriate remarks" by physicians! Remarks like that are very demeaning. Let's all hang in there together, Girls! ("Girls"! Ha! I am 59 years old!) ~ :eek: Good night to you all!

[Irene]

Jill K's Mom... Hi! I can't find your new thread! May I please have the title? Thanks! :)

[LindaRacine]

Hi Irene...

The area within your fusion should not be opening and closing. If it is, your fusion isn't solid.

--Linda

[Irene]

Mornin' Linda! I'm only fused up to T11. Isn't it possible that when I stand up the rest of my upper spine automatically reacts to gravity, and the "pressure" begins to build up? At least that's what Dr. Lenke indicated. Wednesday's X-rays showed my fusion as being very solid. I forgot to mention that wearing a support belt helps me quite a bit. The outside pressure seems to make the inside pressure more bearable. Maybe Dr. Lenke is right... Maybe I'm the only one who complains about that "crushing sensation"... Perhaps my skinny body is simply overly sensitive... :(

[sweetness514]

I don't think you are the only one Irene...

I do feel it too(the upper weight, that is also hard for my lower back), and am not skinny(am normal weight for my height). It is also a matter of muscles, bones and physical strenght. I was never physical or did any violent sports before the surgery and was not build very strong, since I am very delicate when it comes to my bone density and when I was 18, doctors told me that I had bones of a 12 year old. Like I said, I do feel it less with time and exercise for the back muscles like swimming and light weight lifting helped me, but I take also calcium and have to be careful as my mom has osteoporosis :(

Your doc is not the first one to say that about you being the "only" one to complain, they often say that as they don't like to hear people in pain especially when they feel helpless :rolleyes:

[krystal]

Hi Irene,
Sorry I haven't been responding. I had a cat scan with a myelogram and it didn't go well. Major headache with pain in the right leg. They "brushed" up against a nerve. Then the pompous ass said the pain wasn't from the myelogram. Yeah o.k. Then offered pain medicine. I told them that isn't why I called I called to find out if I should ice the headache and back. I get so fed up. They act like it is all about narcotics.

Anyway I was thinking back to when I was skinny. LOL and wondered if I felt the same way with the rods. I don't remember any pain at all. But I do recall when I stopped working out and the muscles in my stomach were weaker. You mentioned wearing a brace type of thing. I wonder if your muscles have weakened due to prolonged wearing? Just curious. Let me know.

[Irene]

Hi Sweetness ~ Hi Krystal! ~ Your comments lifted me this morning. Getting out of bed was depressing for me, but when you showed me that I'm not "alone" with my scoliosis problems, my attitude changes for the better. Sweetness, what a warm feeling to know you understand. Thanks for telling me that you have felt it too. You especially helped me by saying "Your doc is not the first one to say that about you being the 'only' one to complain, they often say that as they don't like to hear people in pain especially when they feel helpless". I think I agree! ~ I exercise quite a bit and my muscles are strong. ~ Krystal, I don't know what to do about using my support belt. I agree with your logic that using it too much could be interfering with muscle strengthening. I asked my doctor about that and he told me using it is fine... that even "normal" people use those belts, especially if they have jobs that require much standing and lifting. But maybe he said that to shut me up! Like Sweetness says... "roll eyes"! Who knows! I think I'm going to take Linda Racine's advice and get Dr. Bridwell's opinion. ~ Hope you all have a nice Memorial Day...

[sweetness514]

Aww, thanks Irene :)

I too get courage coming here and trust me, lately I don't feel like getting up in the morning either, since I know that I have to spend my day trying to to "cope" with the pain. I also am not looking forward to spending this Summer looking for another ortho and going to other doctor's appointments b/c my broken rod is getting on my nerves and I want a second opinion, don't know what do to now and for like a lot of us here, surgery always is scary not only just b/c of the surgery and risks but b/c of the fear of ADDITIONAL surgery, sigh :( Like Krystal said, I was wondering about your belt, since I did wear the brace for a year after the first surgery and the doc told me that it wasn't good for the muscles, but it is only a belt for you and not a whole brace and you're right, many people wear them.

But anyway, let's take it day by day, that's what I say :cool:

[Irene]

Sweetness514 ~ Hi again! How in the world did one of your rods break? I'm sure if I did some "digging" through this Forum, I'd find your answer. Please forgive me for taking this shortcut! If you'd like to talk direct, please do! My email address is ReenMommy@aol.com ~ Thanks, "Sweetness"!

[krystal]

Hi All,
I hope everyone feel great today. I feel like I am in pain for everyone, LOL. I had the myelogram and it apparently didn't seal and I have a leak. I have a headache and back ache that wont stop. Tuesday I go in for a bloodpatch. The doctors are all out for the weekend so no one can come in til tomorrow. My luck.

Well I have had some time to think back to wearing a back support during my job at a grocery store, and I remembered how the muscles in my back were very weak from wearing it but I also remember right above the line wear I wore it was always sore. I guess it took the brunt of the lifting. I can't wear them now at all the pressure is so bad that I feel like it makes my spine feel crushed. The lower back is the worst for me after I gained weight and at times even wearing pants that have a waist band that is snug hurts.

I am trying to figure out how I am going to make it through laying in bed after surgery. I cant stand it now just a few days. I am going stir crazy. Well I gotta go the headache is coming on strong. Have a great holiday :) .

[sweetness514]

To Krystal...I'm so sorry about your pain, hang in there and hopefully it will go away soon :) I did some prayers last night and included my scoliosis friends :)

To Irene...I broke my rod when I put my pants standing up in an abrupt way, last year :( I should have put them sitting down but I was feeling better that day, had slept more and was getting ready to celebrate my hubby's b-day :o It took a year for the doc to see the breakage in my rod through X rays, since they couldn't see it at first and sent me to physio, acupuncture, etc...thinking it was only inflammation but I KNEW something was not right, there was clicking in my back and a BIG pop when it broke...of course nobody understood what I tried to explain :rolleyes:

But anyway, I hope everyone is feeling all right today, I didn't have a good day yesterday, was at the grocery store and had one of those shooting pains in my sacrum region and dropped to my knees :confused: Legs were numb for hours. It was quite embarassing and I started sobbing uncontrollably, everybody was staring...thank God hubby was there :) It sure helps sharing our pain and experiences here, take it easy all :cool:

My name is Nancy, btw ;)

[krystal]

Hey Nancy,
Thanks for the prayers. I will keep you in mine as well. I am up and down quiter a bit today. I think laying in that bed is making it worst. It feels like my head will pop off if I sit. I have to go for the blood patch tomorrow. What a thing to look forward too. :rolleyes:

I read that you had the problem with the legs going limp. I have done that often. I wonder sometimes if the nerves are so shot out that it just comes on suddenly. I had that problem and they blamed it on my knees. I knew better. I never had a pain in my knees ever. Then they found the disk was gone and that was they disk that controls the nerve that runs down your leg. So anyway it is back to bed. Talk soon. I have instant messaging if anyone wants to contact me when I am on do so. If it is me on I will chat.

[LindaRacine]

Hi Nancy...

I don't think there's anything you can do to break a rod... certainly not putting pants on. Rods break in an area of non-fusion because the rod weakens from being bent back and forth. It's usually described as being like a paperclip. If you bend it back and forth enough times, it will eventually break. Mind you, rods don't bend easily, but the weight of your torso will make them move in minute amounts if there's a non-fusion.

Regards,
Linda

[sweetness514]

To Linda...My ortho told me that I was fused the whole region that was operated and so I don't know about an area not being fused, but I'm getting a second opinion. As for the rod breaking, I lifted my leg pretty high and that's when it popped really loudly and I was thrust to the floor, mind you they could barely see the breakage when it happened in the X rays I took a week later, but probably like you said it was the back and forth and that time that I put my pants that way, it did more damage...

To Krystal, hope your day at the hospital went well :) I asked my physio about the shooting pain in my sacrum region, and she said that it could be from a slip there and it happens when I get up a certain way, I have to be careful. Don't have knee problems either as of now, except before I got orthesis for my shoes wich were SUCH a relief from all the pain I used to get in my heels/legs/knees, due to my flat feet. Doctors told me that it was my back that was the cause but I knew it couldn't be responsible for all my pains.

[LindaRacine]

Hi Nancy...

David Bradford at UCSF told me that he believes that the only way a rod can break is if there's an area of non-fusion. Unfortunately, many non-fusions are not visible on x-ray. I think the reason that doctors often can't see a rod break on film is that the fusion (which often grows OVER the rods), holds the rod in place. As time goes by, the rod moves enough to finally be seen. Good luck with your second opinion.

Regards,
Linda

[sweetness514]

I did have a tomogram done and I remember the ortho that performed surgery on me said that he wouldn't fuse all of the spine(to leave me with some flexibility), but now this ortho said that I am. This is a good question that I will be sure to ask this second opinion ortho.

[krystal]

Hi Nancy,
I am almost better after the blood patch today. I got too much pain meds and it made me sick. But I feel a ton better. I met this guy one time that got into a minor car accident, and he broke his rod. He was stationary and the car that hit was only going 30ish mph. His was stainless. Then I met a lady that her rod broke and she had titanium. She did not fall or anything, and hers broke. So I guess it can happen in the strangest cases.

Well I hope everyone feels better today. I am going to lay down so I don't pass out. LOL. Take care.

[krystal]

Hi All,
I just want to check to see if everyone is donign well. I am almost well. The blood patch worked for the spinal fluid leak. But it was very painfull. I think the nerve was hit both times. I am allergic to the pain meds they gave me and it took several days to feel better. Just to let anyone know that is about to have a myelogram done. Don't have it done too close to the weekend in case you have complications. If the doctor would have taken me in on the Saturday and done the blood patch then I would not have had to spend that many days in bed. I was flat on my back from Friday til tuesday and then tuesday til thursday. I guess It gets me prepared for the up coming surgery. I lost 4 lbs. though. :D LOL.

[sweetness514]

Glad to hear you are better, that is nice of you to also inform us about your experience with the myelogram. I'm waiting for my second opinion ortho to call me for an appointment. Sigh, it's very hot here and I did some shopping today(went over budget, but I deserve it :D), am trying to take it easy.

[krystal]

Hey,
It must be cabin fever. I went shopping today too. I still can't walk far so it was a short shopping experience. I have a funny tight pain in my tail bone. When I walk it pulls so it is truly uncomfortable. Well I hope you can get a quick appointment. Sometimes here in FL they will look over your records and if they cant do anything more than the other doctor recommends they won't give an appt. to you. I have really been mad about those let downs. Now I have better insurance for myself so I don't have to deal with that nonsense. Well take care and if you want to email me it is cntrykrystal@aol.com.

Krystal

[sweetness514]

I live in Canada(Montreal), so insurance is not a problem for us but sometimes the system is infuriating, b/c of the wait and lack of "compassion from the staff :rolleyes: The secretary of this new ortho told me that he will check out all my X rays and test results from my tomogram, and THEN see if he wants to see me sooner than later, you know if I'm considered "urgent" in their opinions. I did a bit too much walking yesterday and shopping usually drains my energy and is now considred a work out, LOL. Oh well, take it easy :cool:

[Lavinia]

Irene - your pain sounds quite a lot like mine, which has just been clarified at my last hospital appointment (6 months post-spinal fusion, age 55). I too was convinced it was the instrumentation hurting, and this was what the consultant said in February. He also said it should settle down, which it didn't. It was stopping me leaving off my brace and generally making life a misery, a feeling of metal digging into flesh which receded when I lay down, so best in the morning and worse as the day goes on or as I do more (after swimming it was terrible!). The suggestion this time makes sense, that it is muscle spasm - which makes sense, since the pain goes when I lie down. Probably because I expect it to hurt, so when the pain begins I tense up (round the top connector) and the pain gets worse, so I tense up more. He suggested I try taking ibuprofen now that the initial period of fusion is over, but unfortunately it upsets my stomach. But just knowing it must be muscle tension rather than the hardward itself helps a lot. Hope to get some physio and later some yoga lessons which might help me learn to relax it.

Best of luck,

Lavinia

[Karen Ocker]

Lavinia:
I had muscle spasms for a LONG time. What helped me was acetamenophen(paracetamol) 1GM-up to 4 GM a day. Does not bother my stomach.
Are you in the UK.? In the US we have time release acetomenophen in Tylenol Arthritis so that one needs to take it less frequently.
I also used naproxen; it did not bother my stomach like ibuprofen.
My pain management doctor let me alternate or even take it as needed around the same time.

Does your surgeon say you still need the brace? My surgeon said is was mainly for my mental state, protect my tender back against sudden movements in the beginning and jabs in public. Sooner or later we have to be weaned to allow our back muscles to strengthen.
Karen

[Lavinia]

Hi Karen,

Yes I'm in London. Sometimes it feels like the back of beyond in terms of scoliosis care compared with US.

Thanks again for the info about paracetomol and naproxen. My consultant has always scared me by saying how dangerous it would be to take the brace off in the first 6 months, so I kept it on apart from brief attempts in the last month or so. However, I had an appointment (with his registrar this time) who said now th e6 months is up I could just leave it off. As it had been so painful in recent weeks I thought I would do just that, and it has not been too bad - certainly not worse than with it, and a great relief that I won't be sweltering in the fleece lining over the summer! The large muscle spasms (round the ribs adn back) don't bother me because they don't hurt, it is the upper back pain that is troublesome. However, I shall try increasing the paracetomol which I also find by far the easiest in terms of side effects. Unfortunately in the UK they don't do timed release, and also put dire warnings about taking more than 2g in 24 hours, so your info is truly helpful. I think they are worried here about the large number of overdoses with paracetomol, so play it over-safe. Will ask my GP about naproxen as well.

You really have helped me through every step of the way. Am beginning to see light at the end of the tunnel, so hope I can be as helpful to others in the future,

Lavinia

[Irene]

Hi Everybody ~ I've been gone for 5 days. It was nice to read your posts and "catch up" a bit. Thanks for your input, Lavinia. Thank you Krystal, Karen, Linda, and Nancy (Sweetness)... for your posts also. The information you pass along certainly helps me. The comments include much food for thought. ~ What happened to you in the grocery store, Nancy, has happened to me here at home several times... Sometimes when I move a certain way I'll feel a sharp stabbing pain in my left lumbar area and my legs kind of "give out". (Last year it was my right side!) ~ I've screamed and dropped to the floor... and I explained this to my surgeon. He told me that the screw in my hip is probably touching a nerve when I move that "certain" way, and that he could take the two balancing screws out of both hips (because he said I'm totally fused). I said "That's OK"... :eek: !! ~ "I'm not ready for more surgery"! I sincerely don't know what to do. I think I'm going to wait another year and see how things are going. My best to you all... God Bless You and I'm asking Him to help all of us! Have a nice day and a good week!

[krystal]

Hey All,
It is official. July the 12th is the surgery date. I went in yesterday day with high hopes that they would whisk me in to surgery, and much to my suprise they offered epidural injections first. I nearly passed out. I said that is a quick fix and I don't want a fix that leaves me feeling the same. So just before I started to cry he said o.k. let me get the other doctor that will do the surgery. I was confused. So I said what is going on that he came in first. He said it is my decision to have the surgery or the injections. He told me I will never be off disability. I have arthristis all throughout my back and the discs all are bulging.

I am 33 and I will never retire at a ripe age of 65. It makes me feel awful. I will work again but it hit me harder today that things won't be the same. They will fuse the rest of the spine downward. And then they will cut off the "chicken wire" (LOL) and the part of the rod that is just doing nothing but scrape. They are going to use the cage system in the disc space. It seems final in some ways that I will not bend again but as it is now I won't bend anyway.

Well I am hoping I won't have any complications prior to the surgery so everything goes through before school starts for the girls. Any suggestions on how to make it an easier time for kids to deal with a parents surgery would be helpful. Bare in mind I am a single parent and I my parents and I live together so the have some stability but it will be hard still. I am the primary caregiver to all in the house. So wish me luck.

I hope everyone is doing well and take it easy on yourselves. Krystal

[LindaRacine]

Hi Krystal...

Who will be performing your surgery?

--Linda

[krystal]

Hi Linda,
The doctor that will be performing the surgery is Dr. Joseph Flynn Jr. His father is very well known in the Orlando FL area. He has even given his son some advice on how to make the surgery go better because the design of the rod and Luque. It is different than most. They did some experimental work in 88 with Luque and Harrington out of the University of Miami. My doctor then Dr. Richard Strain chose to do things alittle differently for the sake of trying something out of the box i guess. It worked for awhile but the wire at the bottom came loose and started to rub and pinch the nerve. So that will be gone. I hope it takes care of the pain at teh very least. I will never have a straight spine and that is a fact. So I will have to make do with what I have. Well let me know if you have heard any news good or bad. I like to know the bad stuff too.

[LindaRacine]

Hi Krystal...

I don't know anything about Dr. Flynn (other than that his father was a member of the Scoliosis Research Society). The thing you need to find out is how many revision surgeries he performs. You really want someone who has done a lot of these surgeries, or your potential for a bad outcome could be huge. I'd recommend that you get the names and phone numbers of at least 3 patients on whom Dr. Flynn has performed revision surgery in recent months. Call them!

Regards,
Linda

[krystal]

Hi Linda,
That is a great idea. I have asked the people that come into the office what there opinions were of him. They all love him and respect his work. he works with so many people and even travels to the Bahamas and does surgeries there pro bono. He said he has done many surgeries like mine and he offered to give me a list but I didn't take it due to that would have been the cream of the crop and I would not have had a bad comment. LOL.

One woman that day came in and her x-rays were so close to looking like mine that had to take a closer look. If it wasn't for the underwire in my bra I would have never been able to tell. I heard them talking about her surgery coming up and the other doctor that assists him said that hers and my surgeries were done the same year.

My biggest source of info was from the first ortho I went to. Dr. Reginald Tall. He is highly recommended and I tried him and was very disappointed. He said that Flynn was the best for revision surgery. So I then made up my mind to get it done. My primary care doctor send him all of his patients, and alot of them are older people with scoliosis. He said he works miracles on them. I am very confident in his abilities. Although I am a little unsure that the way he is going to fuse is the best solution. If it means I won't have to go back again then I am ok with it.

I initially talked about him using the artificial disc and he said that the bottom part of the back will take too much of a load and cause complications. I weigh too much is what he was saying. LOL. Well we will soon find out. I am going to check a few more things out before I go in. I did call the hospital and spoke to the nurses station on the ortho floor and asked who they would recommend as a great revision/ortho and they said Flynn. I haven't heard anything bad. Also when I went for the cat scan. I asked both doctors who they recommended and they said Flynn was unbeatable for scoliosis. They come from all over the state. Also Flynn Sr. came from Shands. They have an extensive research department for orthopaedics.

Any other suggestions on where I could look? I don't want to look for lawsuits because this state is a state where everybody sues for everything. I have looked at his license status and nothing pending and it is clear. The office people have worked for him for along time. And even have ones from his fathers days there. The radiologist there said that he has all the attributes his dad has and more. Well sorry for being longwinded. I needed this post to really get my head straight too and think of the positive sides.

I am still looking for suggestion on preparing the kids for my surgery if anyone has suggestions.
Krystal

[LindaRacine]

Hi Krystal...

The only other way I know of to judge a surgeon is to consider whether and where s/he is fellowship trained (specifically in spinal deformities).

Regards,
Linda

[sweetness514]

Krystal...

Good luck with your surgery, it looks like it won't be easy but you seem to be in very good hands, that has to be reassuring :)

I don't know what to answer about your kids, as I don't have any, but I'm glad you have your parents to be there. We're both the same age almsot, I'm 34 :)

Keep us posted, I will be thinking about you and will keep you in my prayers ;)

[krystal]

Hi,
This is a link that will take you to their site.

http://www.spinedoctors.md/index.htm
click on Our Surgeons
It tells all about their education tell me what you think. It seems like he has a great education, but let me know.

[krystal]

Hey Nancy,
Thanks for the prayers I will need them. I feel alittle anxious. I know I should trust my family more than I do. I just hate leaving anyone in charge of my well being. I have been a single parent/caregiver for so long. My mother and father are doing suprisingly well since I took charge more of there healthcare and keep on top of things. So that is why I feel vulnerable also that they will slack off in there own also. I will have my sister coming to, and she is a take charge person. She will come the first few days after I get home. She is bringing a lift chair. :D LOL. I really need to take it easy and put my trust in my doctors. It is just hard to let anyone have that much power over important decisions. Take care.

[kathleensrose]

Krystal:
May I suggest that you find out now from your doctor what you will physically be able to do after surgery. This is extremely important because
you sound like a take charge mom. If they are fusing you to the sacrum
its probably a good thing as there is less chance for those unfused areas
to go south later when they take too much stress. I was youn, 42 when I
had had L4/L5 fused. You will heal pretty quickly, thats the problem. If you
start bending, pulling acting as though you are well before the wires at
the bottom of your back are fully fused, you can make real problems for yourself. Be frank with your questions for the surgeon, then sit down
with your parents and discuss how the responsibilities must be shared between them, not you. If you don't do your part which is to take it easy, your back will suffer and your children will suffer as a result.I am sharing this with you because I have had a dreadful time giving up responsibility to others through this recouperation period and I am 63 (you would think it would be easy when you are my age to sit back and just get well-its not-its hell)As for your back not being straight, my back is not straight, but I look straight. I have a waist now, I can wear belts that don't look diagonal. Maybe your doctor can straighten you more then he has indicated. Take care of those things in your power such as losing weight. You mentioned that weight was a problem, it will continue to be a problem for your back after surgery. Focus on losing the extra pounds. Good luck Kathleen

[krystal]

Hello Kathleen,
You know exactly what I am going through. The fusion in the upper lumbar region didn't hold as nicely as I would have like. That makes me alittle bit lop sided. But the lower back is absolutely horrible from the wear and tear on the discs. The stress wore the disc out and then it protruded into the nerve. After having the myelogram the pain was horrific. I have never been in this much pain. I cant even lay on my right side at night. What is funny they say they didn't hit the nerve. :rolleyes:

I sat down today and talked with my mother on some issues. The kids are the biggest worry for us both. They hate change and they have sibling rivalry. My youngest is a mommy's girl. The oldest is like my best friend in a sense. We chit chat about all kinds of things and she has a great understanding. But now that this has been set up with the date she has not said a word to me that isn't mean. I was so hurt at first but them I realized how scared she must feel. I just reassured her that I will be fine.

With this surgery at 33 I hope it will be the last. I can't stand the thought of going through with it again. I have to ask this question if you don't mind answering.
1. When you are fused at the sacrum is it uncomfortable to sit for along time? 2. Also when you bend do you bend with you hips if at all?
I will be fused from the sacrum to just below T-1. The rod will no longer hold any part of my lower.
The doctor said 6 months of recovery. No picking up or bending. A wasn't suprised with that. I remember the other doctor telling me that along time ago. I was wondering when they will do the brace? I remember them fitting me for one early on before the surgery. I wondered if they will wait til after maybe at the hospital? Hmmmmm. Can't remember that long ago. LOL. Well take care and take it easy. For once let someone do something nice for you. That is what I tell myself everyday it seems to help from feeling guilty.
I spent alot of time helping everyone with everything. It needs to come back to me. :)

[sweetness514]

Good Lord Krystal, you're one strong woman! I know all the pain that I've been through especially in the last ten years but you have a lot of responsablities and like you said now it's your turn to relax :cool:

You are lucky to have a family that will be tehre for you, especially your sister as that is rare and from the way you describe her, she's strong too, wich is good :)

I hope everything goes as smoothly as it can(I know that's a big word :rolleyes: ), and that your daughters don't stress too much from this, it must be hard I know.

[krystal]

Hi All,
Thanks Nancy for that post. That made me smile, and after today i needed that. My sister is alot of help because I did enough for her when she had her surgery. ;) LOL.

We had a sleepover with the girls friends this weekend. The kids were super hyper. Then the power and cable went out. So no computer for awhile before the power went out. The girls went home and then the older one started asking questions that made me think she finally got it in her head her own way that I am truly having this surgery. YES!!! :D . All is great just with that alone.

I have started making my list of hospital necessities. It takes me back to when I was 16 and getting ready for surgery seemed like a vacation until I got there. LOL. Take care Everyone.

[sweetness514]

I didn't know your sis had surgery too, or maybe I forgot. Everytime I see a doctor for anyting, and they see that I had scoliosis, they IMMEDIATELY ask who's the one in my family that had it, and from what I know, nobody. We found out recently that one of my second cousins has it, although not as severe. My sister's back and body is so strong, you'd think we were not from the same family, she horseback rides and has all her life. My mom is frail like me and has osteoporosis and cyphosis. My sister's daughter(my niece) will have to be checked, as I told my mom from what I read here, scoliosis is very much hereditary.

LOL about getting ready for surgery Krystal...it reminds me also of how me and my mom went out shopping for cute slippers and new pyjamas, b/c I HAD to look cute and trendy when in the hospital, :D What a disappointment when I only wore that ugly green hospital gown, since I had a drain and was hooked to all kinds of stuff for days, :p

[krystal]

Hey Nancy,
I should have clarified her surgery was for a torn rotator cuff. She had to have it repaired and she is the biggest baby. She has no scoliosis and neither does any of the other ones. 4 sisters in all. I have two cousins from each side of the family with scoliosis. They are 2 years older than I. My two girls have it also. So I worry that their kids may have it too. I fully expected that generation skipping thing. But NOOOOOOOo it has to my kids first. ;) They have a small curve so far. And from what I can tell Erin the older one has straigtened out alot since her last growth spurt.

I had all of my night gowns in the hospital closet and I couldn't wear any of them. I was debating at the store on pants and shirt. No button or buttons. I think I am going with the long T-Shirts and wear the brace on the out side? Or under shirt with pants. I don't know yet any suggestions? Remember it is hot as a oven here too. Undershirts will have to be worn.

[LindaRacine]

Hi Krystal...

Make sure that the orthotist drills holes into the brace. That will allow the heat to dissipate some. I think your best bet for under the brace will be 100% cotton men's undershirts (not T-shirts). (I've heard them referred to as wife-beaters. YIKES!)

Regards,
Linda

[krystal]

Hi Linda,
That is a good idea. I remember wearing those "wife beaters" alot. I am looking forward to getting myself better. I am in alot of pain.

How often have you heard of people being worst off after myelograms?

It really gave my a jolt when they stuck the needle in both times. The second time was the worst cramping I have ever felt. That is why when the other doctor told me that one of the treatments recommended was the epidural injections I nearly cried.

[LindaRacine]

Hi Krystal...

I can't tell you how often, but I've definitely heard people complain that they were very painful. That's why I was surprised that my own myleogram wasn't painful at all. Maybe it depends on the radiologist? The radiologist who did mine has done thousands. I'd love to find out exactly what causes the pain. I'm thinking that maybe they hit a nerve root?

Regards,
Linda

[d_ann]

Hi!

I had an epidural in July and it was the worst experience I've had in a long time. The 'theory' was that there just wasn't enough space for the fluid they injected at the spot they injected it, but the pain mgmt. doc said there is no way to know for sure. It hit me the worst when I got home and took one step up at my front porch - sent shocks through my entire body. I am pretty darn tough when it comes to pain and I completely lost it. I cried uncontrollably and told my mom to call the hospital and tell them something was seriously wrong. She thought I was over-reacting. After taking my pain meds and lying down for about 3 hours, the pain finally was under control, but I refused to go through with the other 2 epidurals they wanted to do. I had zero relief from the first one after the initial pain calmed down.

Then, when I went in for my myelogram, I found out that there was no pain management planned and had a mini anxiety attack - almost rescheduled with an anesthesiologist - but my doctor's nurse assured me it would all be OK. They said I could take a hydrocodone before they started and I was really glad I asked. It was painful and I did cry, but I survived. I don't think I would feel the same if I hadn't taken something before they started. It also was kind of nice because I actually fell asleep while they were doing the CT scan. The tech came in and said I was all done and he hadn't told me to hold my breath. I gave him a funny look and he realized he hadn't told me. He said the images were great so it didn't really matter. That was the very best part of the experience. I did end up with a headache, but opted to stay in bed (because it was the weekend) and by Tuesday afternoon, I felt fine. I guess I just sealed slowly.

Anyway, I have no idea why some people hurt and some don't, but I have great empathy for those that do!

[LindaRacine]

I'm not sure why, but I wasn't asked to hold my breath for the CT either (and I was completely awake). I've had half a dozen CTs prior to this, and each time, I was told to hold my breath. I kept waiting for them to start, and when they pulled me out of the tunnel, I wondered if something had gone wrong, but they said they had great images.

--Linda

[krystal]

Hey All,
JUst to note that when I did the first myelogram the doctor that did it injected me with little shots to numb it first. So then when it went in it felt like pressure. But when he hit the nerve ending my leg jumped uncontrollably. He then took the needle out some, and reinserted it until my leg stopped jumping. He said "I brushed up against a nerve". I laughed (I do that when I am nervous or in pain) and said I hate to see the nerve get hit head on, I'd probably kick someone in the head. Everyone laughed. So when I went for the blood patch it was the same thing except they were putting in the blood and not the dye. It was way worst.

He didn't inject the little shots first to numb. He put the needle straight through but the pressure was intense and then the fluid/blood went in and it was the worst cramping ever. I have never had such a feeling. I will give and example like this. I had a cramps in my leg when I was pregnant from I guess the hypertension I had. I had a "charley horse" in my leg that tore a muscle. This was pain from the myelogram was 10 fold to that pain. I was so sore from the tension i could not stand it. I could not sit on the toilet because the joints in my hips and butt felt like I had worked out for days.

I would imagine that my back is pretty messed up nerve wise and maybe it is effected differently than normal. They said they nerve roots are so pinched and shifted that many of them are so far out of wack. The sciatic nerve is nearly not visible on the cat scan because of the disc is taking up the whole space.

I almost went in for these epidural injections for my neck because it has 4 buldged discs. On the way there I got lost and couldn't find the place I had an anxiety attack and went home after trying to call and not getting through to the office. I am glad I did now. I wouldn't have taken that like a trooper. :)

[sweetness514]

The only experiences I had with shots were cortisone, two where my hooks were(now taken out) and one in my hip bone, and only the hip bone hurt but good God not as bad as what you guys are describing :( I do remember terrible pain when I was severely anemic and they injected me for months with Iron in my butt muscles. Ohhh the pain, couldn't walk, sit or go to the loo :eek: There is also a side effect that can happen when we get shots, and that is to lose consciousness due to them hitting a nerve that makes your BP drop severely. Doctors told me that it VERY rarely happens but it happened to me twice :rolleyes: That's why everybody is different.

Krystal I didn't know you had to wear a hard brace, I hope for not too long :( I only wore the soft/belt type one, but your surgery is lower now as well.

[Karen Ocker]

The present standard of care in anesthesiology is for some type of sedation for nerve block injections to avoid those terrible experiences.

You have the right to insist on it or go elsewhere.

I work in an inner city hospital and our patients are sedated. My point is this is not something new.

Karen

[krystal]

Hi All,
Nancy I hope all is well today. I stayed up late to read about fusions and this cage that they are putting in. I got alittle curious to were they will get the bone to fuse it. I also came across a few sites that were very informative about lumbar injections. It enlightened me on those epidural injections and I don't know if I will ever agree to them. LOL.

Karen how are you doing? These doctors the do the injections seemed very over confident. The one said I have done 100's of these without one having a spinal fluid leak. I have no clue as to why it didn't seal. I wonder if people who have DDD (degenerative disc disease) have those problems too.

I wish they would quit referring to injections as bee stings. :D I started to laugh when they said that to me I thought that might work on a child not on me I have never been stung in the back. Plus my daughter hates shots and now she is terrified of bees. :eek:

[Karen Ocker]

Krystal:

I am doing well. I never had the injections because I needed the surgery; nothing else was indicated. I was able to control the pain with Pilates.

I did have a myelogram 20+ years ago. They gave me a sedative pill before it and numbed the skin beforehand.

I have no pain now.

Karen

[Irene]

Hi All ~ Under the thread "I tried to commit suicide in the hospital", Julia has never responded. She wrote on June 3, 2005... almost 2 weeks ago... and I haven't seen a post from her since then. Has any one out there heard from her? I'm sure worried about her... I just need to know that she's OK... Thanks...

[sweetness514]

Irene...

I know what you mean about Julia, I do worry too. I would think if she logs back in this forum and sees what we all have posted to her, that she would respond to ease our worries, but as I checked in her profile, she hasn't logged in since June 3rd, the day she posted that thread. Maybe she's taking care of herself and hasn't been online. Maybe a private e-mail to her would reach her, if she checks her e-mails, who knows.

Hope you're doing all right Irene :)

[krystal]

Just to let you know I sent Julia a message. She received it but didn't respond. I am assuming she is ok.

Hope everyone is doing better.

[Irene]

Thank you Nancy (Sweetness), and Krystal... I'm going to try and send Julia a "private" note myself. Last time I tried, it didn't work. I'll try again! :)