Pepper....how are you doing?

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ms_west

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Thank you Justoneofus -- that is super close to my house. I just looked and he is not in my Kaiser speciality handbook. :(

Today my nerve pain is screaming. I am about ready to chop off the legs. :mad:
 
Just wanted to say hello......Is your pain and discomfort any better?

Thinking of you....

As for me trying to spend only 5 hrs at work but manage to get sucked in for the additional hour...Telling myself I have to stop doing that.....I've been VERY tired...It's difficult getting back to work...

Please give us an update...:)


LAF
 
Thank you so much for checking on me and I am sorry you are struggling with work. Just remeraber not to push yourself to hard. You have been thru major major surgery. You would hate to reinjure yourself in anyway.

I am hanging in there. Having good and bad days. My doctor has readjusted my meRAB and I am learning to cope with 2 confirmed diagnosis of failed back syndrome and post laminectomy syndrome. At this time, my answer is narcotics :( but I am clinging to the hope that there will be medical progress in the future that can change my diagnosis. I won't give up hope.

I am pretty excited I have been approved for accupuncture, hot paraffin treatment, ultrasound, light massage, and ice and heat. I am excited about the paraffin treatment. I had it done to the hanRAB but not the back. ??? I should be starting that in the next couple of weeks.

Again you are very sweet to ask and I pray that you don't overdo and put yourself first before work. ((((Hugs))))
 
Pepper, I have been following your progress (or lack thereof) and read your post about the new doctor and his thoughts that there may be hope yet for you to get better. I am praying for the possibility. I know you won't give up and that you'll keep fighting this diagnosis. I feel in my heart that you are going to improve! I don't post very much but I do read a lot; in fact, I'm doing much more reading so that I can keep up with what is happening with you.

I hope that some of this therapy will help you enough to keep the pain levels down some. Along with the medication, perhaps you will be feeling better soon; at least, that is my prayer.

Carol
 
Pepper, you are right...I somehow missed the post that the new dr. has changed his mind. God, I am so, so, sorry. Did he tell you why? I mean, he surely didn't just decide there wasn't anything he could do, right.

There is nothing I hate to hear more than the worRAB "there is nothing to be done". I think that's just a copout. I honestly believe that no case should be considered hopeless just because 2 or 3 doctors have declared it so. I don't know where you live or what your financial situation is, but I do know that if it were me and I had the financial wherewithal to travel, I would go to Mass General.

No, I haven't had an implant or any kind of surgery recently. My implant is the pump which I have had for over 4 years now. I am due to see my pm in a couple of weeks as my spine specialist thinks I have piriformis syndrome. I've been in therapy and the exercises have helped some and he said that's a clear confirmation of the diagnosis. Of course, the exercises lead to other problems, lol. Most likely I have inflamed the SI joint as I am having low back pain now, too. Compared to what you are dealing with, I'm not complaining!

I'll continue to pray that things somehow do get better for you. I know you are a very brave, stoic, lady who won't just lie down and give in......that's why I keep watching for posts from you; I just really admire you and the way you have handled all this for so long. Kudos, pepper.

Carol
 
Lorie, I think he is in my referral director and is listed as: Faheem A. Sandhu, a neurosurgeon. This is who did your implant as well?? If so, I will ask for a referral.

radio frequency or prolotherapy has not been brought up.

Thank you so much for helping me.
 
Sorry Pepper , but I don't think meRAB is going to help as much as the stim would . Why won't your doctor approve the stim for you ? Summers here and we should be enjoying the warm weather like normal folks ... :cool:


Hope everyone is feeling better today


Shawley
 
Yes, this is the Dr. who did my implant...but he does all types of back issues. He was very easy to talk to and very helpful.

Lorie:angel:
 
Thank you Carol. I don't think you heard my last doctor who gave me hope - has now said there is nothing he can do to fix me. I was devastated but it will be okay -- I am a fighter. Right now I am just trying to accept the diagnosis.

How are you doing? You received an implant if I remeraber correctly? How is that working out?
 

Pepper, I am so sorry you are feeling so rough today. I know about that kind of burning nerve pain and it is horrendous. Before my last surgery last Feb, I was at the point of throwing in the towel forever because I couldn't deal with the pain 24/7. Thankfully, my last surgery helped a whole lot, tho I now have sciatica from piriformis syndrome. Oh joy. Hopefully, I will be getting an injection on the 20th for that.

I am so very glad to read that you haven't given up and that you are ready to start looking for someone who won't say "nothing to be done". You are too strong a lady to just lie back and accept something like that!

May God lead you to the right doctor.

Carol
 
Hi Pepper. Sorry to hear that your doc threw down the gauntlet. Not anything any of us want to hear. Im glad you are keeping as positive as you can. Question for you.. have you seen anyone at the Virginia Spine Institute? Schuler is supposed to be really really good. But that center in general is supposed to be the best of the best in the Washington Metropolitan Area, bar none. The only reason I quit going there was way back when, they stopped taking my insurance. Even if they dont take your insurance.. might be worth a consult there to see what they think. This group actually sits down as a collective and discusses your case, even though one doctor is technically treating the patient.

Just a thought if you have not seen them. You are in my thoughts.
 
Sorry, I have not gotten back to you. On certain days it easier to discuss my case and on other days to be honest I can't talk about it. I am trying to accept my fate and it is really hard. When I had these last couple of surgeries I just knew that I would recover without a hitch. I mean afterall I had my first surgery in 1982 and went until 2006 with zippo problems. It was natural to think that I would recover without complications and it has been difficult to go thru these last 3 surgeries and experience nothing but deterioriation. :(

Justoneofus, no I did not go to VA Spine Clinic. I definitely have given it alot of thought and my family doctor actually talked me out of it. He feels that I am going to hear the same diagnosis and that I am setting myself up for disappointment.

Today, I was at church and one of our merabers is a family doctor - I was having a miserable day and it was written over my face and in fact sweat was rolling down my face. He came up to me and whipped out his blood pressure cuff and taking my pulse. He asked me what was going on and told me to come with him. We went into a side room and I explained my situation and he mentioned to me not to accept this diagnosis. It is a waste basket diagnosis meaning we don't know how or what to do for you anymore. He asked me about who I was seeing and then told me I needed to get to a university hospital. University hospitals deal with patients all the time that have been diagnosed with this, they deal with complex cases, and see alot of patients just like me. He has sent several patients and amazingly they have been able to FIX them.

Justoneofus, don't you see a doctor at Georgetown? If so would you recommend him?

Shawley, I have not ruled the stim out. I am thinking about it but for right now I just made vacation plans, Chinneateque Island, for next month and I don't want anything to interfere with that. Also, I have been discharged completely from the surgeons. They are done with me so my meRAB are all prescribed by my GP. I need to get referrals and start the process after vacation in July.

I can't tell you how much your prayers and suggestions mean to me. I will get thru this all and right now I am concentrating on today and have decided not to worry about tomorrow.
 
Diet P...Happy to hear that you ran in to your local Dr. and he has encouraged you to find some more answers and not give up...Thinking of you as you go thru this difficult chapter...to sunnier days ahead...

We continue to pray and think good thoughts.

Laf:angel:
 
So glad to hear that your very positive outlook continues....you are a very special person and God has given you the strength to cope with this. Again I must say how very much you have helpoed SO MANY of us to also stay positive...

Yes getting back to my very demanding job has been challenging...I continue to have this awful groin pain on the left leg (opposite where my sciatica was) but same leg /hip as the graft..It feels like a constant muscle pull and very annoying. I keep trying to push thru the PT just the same.

Thinking of you with only good thoughts.:angel:
 
Pepper, I did not have any tests done at the Drs. office, as I took my last MRI. But, I have to say, that I went there with a referal for the stimulator...so he wasn't looking to dx. me. Im not sure if you are planning on going to him with the same referal or if you are going to get a 2nd opinion. If you are going for an opinion...I don't know if he does his own tests or not. I am sure if you have MRI's etc. from this past year, he would be able to use those rather than send you for more. I wish you the very best and I am still praying for you.

Lorie:angel:
 
Hey Pepper, I have been watching for your name to pop up, with an update. I am sorry for what you are going through...I know how tough it is. I will keep you in my prayers and I will add it to our prayer list at our church. (You can't have too many people praying for you;)).

I wanted to tell you, the same thing that you mentioned that your church friend mentioned. Don't except this as the end. Worse case scenario...it is a correct dx. and you are no worse off. But you should always get at least a 2nd opinion and even a third, and a hospital university is exactly where I was going to tell you to go. Dr. Sandhu is at Georgetown and his card states that he specializes in complex spinal conditions. I highly recommend him, even if it is just for a different opinion.

You know, I have asked 2 different drs. (at 2 different times) if they would mind me getting a 2nd opinion. Both of them told me that they would have suggested it to me, had I not metioned it. For your dr. to tell you that it would be usesless, should tell you something about his character. He is more concerned that anothe Dr. might find something that he missed..than he is with you getting better.

I was also wondering if you had talked to your dr. about radio frequency or prolotherapy? I think the RF is wonderful, if it works. You can have it done as often as needed and it usually lasts for 1-2 years. Also, the procedure was not as bad as some of the others that I have had.

Anyway, I am thinking and praying for you.

Lorie:angel:
 
Lorie:bouncing::bouncing: How exciting. I am thrilled to have someone on my insurance that I can see that has a good reputation. I will ask for a referral. Did he have you go thru a bunch of tests or did you bring your MRI, CT scans, etc.? My biggest fear is going thru an slew of tests.

Thank you Laf for your support. How are you doing?
 
That's good news Diet...

Please see my update in the post from Marlosmaom...entitled Looking for LAF..ter...I've hit a rough patch.:(
 
Pepper.. do whatever you need to, see whoever you can and keep looking. That is hope and you can't give up on that. There is always hope.

I posted on your one, but the doc I am seeing right now is from john hopkins and has an office in Asrabroadurn as well. Dr. Ali Moshirfar. He's listed. Nice guy, straight shooter. (I dont recommend his PT.. but other than that great group).
 
Carol, I am sorry that you know the nerve pain too. Out of everything that is the worst of all the pain I have ever experienced. Narcotics just don't touch it. Did you get the deep cramping with it too? I wish you well on your injection. The pinformis sound painful. Hugs

Lorie, who referred you to him? Boy, I am just asking a ton of questions.
I am just scared of the nerve conduction tests. My GP has talked to 2 different neurologists and I have talked to 2 surgeons and everyone is not recommending them. They have told me it is obvious I have nerve pain and it is permament and that the nerve conduction studies would just cause me more pain. So ....needless to say this has me nervous as all get out.
I think I am going to see him for a 3rd opinion and also to chat about the stimulator.

Laf, I will go read your post. I am sorry you are having a rough time too. :(
 
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