Neuro Appt. was not the outcome I expected! More waiting, but in my best interest.

06-28-2008, 07:47 AM

Hello my friends.!!

I went to the Neurologist yesterday. I was disappointed when I left and of course in tears again because I had expectations of how things would go.

First off I finally figured out why my Neuro has said that he does not like to do Fusions on people my age. He was thinking I was in my 20's. I don't fault him for not realizing it is in the chart that I will be 39 in December. I do have others that are shocked when I tell them I am almost 40 years old so I now understand why he thought that. So no surprise he might think that. I often wondered if that might be his train of thought.

Anyway, the Pain Psychologist presented me as a good candidate for surgery. But my neuro was still a bit concerned that I would not get enough pain relief, thus causeing me to be even more upset. He says no mater what gets done I will always have a "Bad Neck". That I already knew, but is discouraging to hear it from your doc. My life and neck as I once knew it ..is forever changed.

So he wnats me to go back to the Orhto surgeon that I went to see for a second and pick this docs brain and see what he thinks about my case. This was dissapointing because you know it is hard to get in to see these docs in a timely mannor. My neuro did say that the Ortho surgeon owes him a favor so he was going to personally call to try and get me seen either next week or the week after. That office is very very busy. They have four office locations and they have surgery schedules so I am not that optimistic for being seen that quickly. We will see.

My Neuro was planing to Fuse C 4-5 and C 5-6. He did open the discussion about whether to Fuse C 3-4 because there was proof of pain stemming from this disc in the discogram. He has made it clear to me that I will eventually need to have future fusions on my neck besides the present one we are discussing.

So He wants me to see the ortho doc and see what his opinion is. Not just for myself but also I think for him(the neuro) because he is undecided as to whether he should also fuse the C 3-4. I was always wondering why he did not want to include this level in the projected surgery since the discogram showed damage and pain coming from this disc. The discogram even showed a small amount of damage and fissuring and very small amount of pain coming from C 6-7. I think he is still trying to decide whether to do a 3 level ACDF or 2 level.

I am happy to see the Ortho surgeon and feel it is in my best interest, but I could have already had this done 3 weeks ago!

My neuro said that he will do his best to see if he can get me into the Ortho Surgeons office as soon as possible and then once seen by the ortho he said he will also do his best to see me again quickly and get the surgery scheduled with in a few weeks of our next visit. This next visit can't be scheduled until I have the appointment set for the Ortho surgeon. Once I have the Orhto appt. I will st the appt. with my Neuro

I asked him if he thought that I would be able to attend my fall college semester and his answer was No he did not for-see this as a possiblity. This was a huge dissapointment to me

. School helps me feel productive. But I know how hard it was last semester and I also know my Neuro has my best interest at heart once again. I also know I do not have it in me to struggle through another semester in Pain.

Maybe God is trying to show me that if I have this surgery I need to only focus on recovery from the surgery and of course stay close to my 12 step groups and support system.

SO yesterday I cried all the way home from the neuro's office despite knowing all the things we discussed are in my best interest. I think I was saddened the most by yet more delay and the fact that college is pretty much out of the picture.

Today I feel better and the saddness is not so up front and on the surface. I feel so bad for my Mom. SHe has her own back pain and physical problems and her and my Dad have their things to contend with. This must be really hard for her to wittness. She.. I think feels each disapointment and pain etc that I feel. She and I have no control over any of it. The only control we have is how we deal and react to the information. For me it is really hard at times.

To help myself cope I am calling the Pain Psychologist on Monday and making an appointment despite my money issues. Right now my sanity means more to me then a few dollars. I stilll have options for more financial help out there that I have not yet tapped into. My sisters would always help if needed.

The settlement is also delayed because my attorney needs to have the presentation from my neurologist and the Neuro is not going to send the presentation untill he feels he ahs all the information together. I am sure he is still collecting information and would want to include and things from the ortho surgeon.

Well my friends....another period of waiting. It is all part of the process. I am coming to learn that life is full of many processes...darn it...lol

I have surrendered

today and feel myself more into the acceptance of "what is".

I now need to work on myself and the way I carry myself through the Process. I know that God is here and I will not go hungy or unsheltered or unclothed....you all get the jist. He is here for me as long as I seek him out.

Thanks so much for reading and supporting me. Much love to all of you!

Chrissy

06-28-2008, 09:31 AM

I know this was extremely painful and difficult for you to hear yesterday but Chrissy you are right it is for the best. I think in some cases we are so willing to do anything to obtain pain relief. If you look at your posts, you are beyond ready to schedule this surgery which is 100% understandable.

I think getting a second or third opinion is the way to go. I would hate for you to have this surgery and continue to be in pain or be worse off. I hope that I have not been to blunt -- I just would hate to see you continue with pain like I have after my last surgery.

Good luck and remember that we are here for you.

06-28-2008, 09:47 AM

((((Chrissy)))), I'm so sorry hon. I know how excited you were about this appointment and I understand your disappointment. I know you had hoped this would all fall into place as you had hoped, especially where school is concerned. But, as you said, it may just be that God has other plans for you. And I really do agree that your neuro has your best interest at heart. He really sounds like he cares about you as more than just another "patient". It is rare these days to find a doctor like this. So many of them just get you on the table with little regard as to the outcome.

I know you feel like the clock is ticking and time is slipping away from you, but the truth is, that we are never too old to pursue our dreams. Especially when someone is as dedicated as you are. Maybe it's just not time right now. Maybe there is a different job in medical admin or counseling while you are in this process. I believe from just the short time I've "known" you, you are destined to serve and help others. It may just be in a different way. You would excell in any way you chose to do so. You have such a warm and loving heart.

God Bless you sweetie. I am here for you and will continue to keep you in my prayers. I will always, always be in your corner. Hugs, CMP/MM

06-28-2008, 09:47 AM

Chrissey,

I am sorry that you didnt get the answer you thought you would get, but as you said it is in your own best interests. I know fusions are not entered into lightly and now after having one I sure know why. I am sorry this isnt going to help your pain and I can only imagine how you were yesterday when you got the news. I remember howling in the car after many a consultants visit. I normally had my sister with me and we cried and cried and cried. I kept saying I cant be left this way............. my heart goes out to you and I know what you are going thru. You are in my thoughts

Round1

06-28-2008, 10:22 AM

be glad you found folks looking out for you and not someone else's bottom line. You can see from back/spinal boards that the fusion wasn't the answer for all. Some docs didn't tell folks honestly either. At least you are getting Both sides to the story. So many folks had failed fusions that the pain and after surgery complications caused were way WORSE then the initial on set of problems.
I am one of those that did double level c3 -c 6 and i am much worse now then before the surgery.
I know it stinks but there are things you can do. When it gets really bad put on soft collar for a while. Take meds rest, ice ,heat positive imagery if you can find a yoga and or ti chi group go very very slowly
You are in our good thoughts prayers and wishes.
I have a question did you like your neuro? Out of all the docs on my team my nuro is my favorite.

06-28-2008, 11:35 AM

Hi Chrissy - I agree with another poster that taking 1-2-3-4 opinions is a great thing as harrowowing as it is to have your life revolved around doctor appts.

A friend of mine had a neck fusion and hardware and he's 90% better for it but he has excellent doctors in another part of my State.
Thining of you
T.

06-28-2008, 06:46 PM

Chrissy,
I know how disappointing it can be to hear this news. Well maybe not exactly this news but I have had two doctors tell me that there was nothing else that could be done and I would just have to manage the pain.

I know that school is very important to you but your health is even more important and getting out of pain too. If you have this surgery done and it's a double or triple fusion, you are going to need months of recooperating and physical therapy to even be able to return to school.

Please try to manage the pain as best as possible right now until you do have your surgery. Do whatever you can to get into see the ortho doctor very soon. I will keep praying for you my friend. Hey, you never said you looked like you were in your 20's

brian

06-28-2008, 09:32 PM

Hey, I wish people still thought I was in my 20's!!! You lucky dog!

I feel your pain about school. Your health has to come first. When You are feeling better you will do better in school and it will be easier to reach your goals! I did have good news(I think) about my school. They previously told me I had to retake my whole program(Medical Coding) but now they've decided I only need to retake 7 credits. So I just have to get enrollment to drop my earlier grades and I'm good to go. I don't know how to do this or what the criteria are but the head of the department acted like it was no big deal. Anyway, be patient(not a nurse....a patient

...bad joke...I know) and your time will come.

I agree with Diet that a second or third opinion is a good idea. I know you're 'ready' for the surgery but your doc seems to have your best interests at heart.

Hang in there!~Mush

06-29-2008, 05:23 AM

Good Morning

Thanks everyone! I agree with everything that everyone said. It is a disapointment, but--yes-- the Neuro has my best interest at heart.

I have a hard time with more waiting. You think I would have gotten used to it when I was on workers comp. lol

I think I am so ready to feel that I am getting better that it can cloud the logical order of things. The appointment was not bad~~~just not what I expected.

As usual I will have some work to do on myself to get over the emotional aspect of this waiting factor and just pray that I will be able to see the Ortho surgeon soon. He is the best spine ortho surgeon for necks around my area and my Neuro is the best spine surgeon and brain surgeon in the heurology feild. SO I am being seen by the best docs in the area and that is comforting. I will opt to stay with my neuro because he has already worked on my spine before if we do go ahead and do the surgery. Maybe I seem so "gung-ho" about doing it that is causes the neuro some concern. I just want to be on the recovery road ya know.
I went to a 12 step meeting yesterday and I really did not plan on sharingin the meeting but it was a friends sobriety birthday. He got sober a few months before me and we were in councleing groups together for almost a year. ANyway I started by tlaking to him about some of his accomplishments and some of the fun things we have done to gether. But....I just started talking about how I am tired of the injuries and doctor appts and how my life is on hold and then related all this back to how I cope with it all as a person in recovery. I totally cried cried cried. Had to have the kleenex box even..lol

I don't usually do that in a meeting but it did help to here myself say that I needed toseek out a spiritual soloution all the time in order to deal with the things that life gives me.

I will let you all know when the upcoming appts are.

I wwill be going to church today and lighting the candles as usual.

Thanks so much everyone,

Chrissy

06-29-2008, 06:08 AM

Chrissy, I can sure understand you frustration. I honestly feel the Neuro is doing the best he can & being really careful. It sounds like he realizes how important this surgery is to you & wants to make the best decision he can. It sounds like he is really trying to do what he feels is best & at least you know you are in good hands there.
I also think that you are really smart for making an appointment with the pain phsy.
This has been so tough on you & know what you need to do.
Its funny that although we know that no matter what we will never have our old bodies back we always hold that glimmer of hope. Sometimes I dont even think we realize we are doing it. I can see why you have been so emotional, my gosh you have been through some tough times & still try to remain productive. Its frustrating to feel that no matter how hard we try there seem to be road blocks up every where. you know like our lives are always under construction. you & I used to say we are like a pair of turtles slowly trying to make our way, but we will get there my friend. We will be patient together. You are always in my thoughts & prayers, No matter what we will continue to hold hands through it all. Sammy

06-30-2008, 05:28 AM

Sammy,

Thanks for your support. Yes...slow as turtles....lol

I am hoping to hear from my Neuro's office today. He said if I did not here from them today to go ahead and give a call after 12 pm. I know he was trying to speak with the Ortho Surgeon to get me seen this week or next week. Fingers crossed.

The thing is I know it will all eventually come together in Gods time, but the waiting is so tiring(sp) I am just worn out as many of us get living a life of chronic pain.

This morning it took me an entire hour to get out of the bed. Roll out I should say. I have such severe neck and scapular buring pain in the morning it is as if I am paralyzed by it. I have to concentrate really hard to move. I wonder if anyone else wakes up like this.

I took my meds a few minutes ago so I should feel better soon.

Sammy, I know you are also going through a tough time and how concerned you are about the meds and the Trans. ESI. I am always thinking of you too. I made it to church yesterday and did light the candle for all who are on this board. I cried during the mass. SOmetimes the words spoken in the sermon are so true with what is going on in your life at the present. You know it was like only one sentence but it just hit me and I sobbed in the church right in the front row. Oh well I am sure people have seen this happen before.

ANyway I hope everyone has a good day today....

Chrissy

06-30-2008, 03:13 PM

Chrissy - I think eveyone on this board has you on their minds at least once
a day - I am sure you have probably tried this but since you do better later in day, could you set an alarm clock to take your meds about an hour before you get up - as I said you may have already tried this but sometimes it is those simple things that we overlook
God Bless You Hugs Aver

06-30-2008, 08:09 PM

Chrissy:
I just wanted to say hello again and let you know that I am trying hard to check in daily with the board. I may not get to reply to many of the posts but at least I am checking in daily. I am still very depressed and I need some contact with people even if just online. I need to find some sense of belonging and purpose.

I just feel like I don't have any purpose and I am sleeping 12-13 hours/day and sometimes up to 15. I know this is alot and has alot to do with the depression. It is a good thing that I am off work and went on FMLA and STD. It was a hard decision to make but it was what needed to be done.

I know that you are frustrated as well. I did want to ask you something since I saw your other post about the meds you take. Do you find the morphine to be less sedating than the Percocet? I am just trying to find the least sedating regimen of medications. I was thinking about asking for straight oxycodone, either LA or SA form instead of the Percocet. I don't know if my doctor would go for that or not. I do remember that the Oxycontin had a less sedating effect compared to the Percocet. I just need to do one thing at a time. I can only take a max of 5/day of the Percocets because of the sedation and I don't want to increase my tolerance too quickly. I am sorry if I am making this post about me but I just wanted to get your input.

brian

07-01-2008, 05:19 AM

Hey Bri,

Sweetie, I am so sorry that the depression is just sucking the energy from you! I know how bad it can get sometimes. How long have you been sleeping this many hours? Are you sleeping straight through 10-15 hours at a time or are you up and then take more sleep in intervals? Just wondering.

As far as meds go, I may be the wrong person to ask...only because I have such a high tolerance to medications. I think all those years of using methamphetamines has really screwed up my tolorance to meds and to pain.

But just the same here we go.

I take the morphine sulfate and I really don't have any sedation at all. It is like taking an asprin. Same thing with the percocet and even the valium 5 mg does not cause any sleepiness anymore.

I am not sure if it is tolerance or if it just not cause me to be drowsy. I am glad for the fact it does not or I would not be able to function.

I do go through periods of time where in the mid day after taking my mid day dose If I am laying down resting or reading etc. I might fall asleep. The thing is that my body gets real tired. SO i am sot sure if it is me or the meds.

I think the sedation part just might pertain to the individual.

Brian, I am glad to see you checking in on a regular basis. I know it must have been hard to take the leave of absence from work. I think you made a good choice and it is time for you to rest. Rejuvinate!!
How are you doing in the recovery stuff? Are you keeping contact with program people? Just a suggestion but you may want to reach out to some of the folks there that you trust and just say hello. Just to keep the conection there. It is hard for me to go to an entire hour meeting. I forced myself to stay for a whole hour yesterday plus all the errands I did before the meeting, and I think that is the reason for the extra pain and "drag" feeling I have today.
You are one of the many people who has really touched my heart here and I really do think of you often, as well as many others here. You all are so special.
Are you stil seeing a therapist? If so do they have experience with a chronic pain patient?
Hang in there Brian, we are all here for you as I am sure you well know. I will say some extra prayers for you today my friend.
(((((((((((((((((soft hugs))))))))))))))

Take it easy and please be kind to yourself.
God bless

PS everyone,

I called the Neuro's office yesterday and they said they were faxing the referral over to the Orhto surgeon. I am guessing it will be a while before I can get an appointment but we shall see. I will make a call to the Neuro's office and ask if I ned to call the ortho docs office to schedule.
It is all very confusing. I really do not know what to do next other than to just wait and try to take it easy today.

Chrissy

07-01-2008, 08:25 AM

Hi guys, I just wanted to stop in and tell you both to hang in there. It has to get better. I think when you feel crummy for so long, it feels good to have a good day and makes you appreciate those good days even more. I am here for you anytime. I read frequently throughout the day since I absolutely have little life these days thanks to being a cper.

Neuro Appt. was not the outcome I expected! More waiting, but in my best interest.

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