Guest Julia59 Posted September 23, 2004 Report Share Posted September 23, 2004 Well I had my appointment today with Dr. Grubb.I told him about all my issues:Same old POTS symptoms---but getting worse lately, more near syncope spells, (more pain in the back of my head, neck, shoulders----basically everywhere, but mostly the upper body as a whole, gut motility getting worse andd the profound fatigue and weakness.I brought up the lead poisening issue. I showed him test results from March 2001 which showed 30.6 lead levels---when the norm is 8.0 or below. He meantioned that I should probably have another lead urine done. I did have another ran is 2001 and it was normal, but they did not run the same type of urine test. They should have done a third---and used the same type of test they did the first time---24 hour urine---with some kind of mix.I was supposed to start the cervical traction back in July after seeing Dr. Bolognese. I was so busy in the last couple of months---but not so bad I couldn't have started the traction. I guess I wanted things to calm a bit before I started. No excuse really. I started tonight----too soon to tell if it helps with my symptoms. I will do the traction for 30 days then call Dr. Bolognese with results.Dr. Grubb said my headaches are most likely caused from the lack of posterior CSF flow-which was also mentioned on my report from Dr. Bolognese. My report from Dr. Bolognese was faxed to my parent's house yesterday. Basically it said the same things I told all of you---the cervical/crainial instability with a deformity of the C1 irratating the brain stem with further pressure on top of the stenosis already there. Of course the cervical stenosis, EDS---which he calls joint hyper motility,and a couple of other herniated disks in the C7-T1 and L5-S1 area's of my spine. Dr. Grubb agreed that the EDS played a role in my joint instability---and spine instability. I just happen to have all of the instability cutting loose at once--it seems that way.He really can't do much to help me right now until I get this traction over with. It looks like he will set up my next appointment for 6 to 9 months. I think he is going to order another lead level. He was so busy today---so I really don't know until I call the office tomorrow to get my appointment time. The receptionist was gone by the time my appointment was over.He just doesn't know how to treat my symptoms until I get my traction done to see if it helps. Then we will know what symptoms are from POTS and what are from all the other mess with my neck and brain stem area. Maybe we'll know, because POTS symptoms can come from problems like that.I felt like such an idiot today, I was slurring, talking like a drunk----and I just was not focused. I sounded like a person with their ADHD out of control---only in a slurred fashion. I have so much going on---it's all running together.And this constant humming/vibrating sound in the back of my head is getting worse---and driving me nuts.Also, Dr. Bolognese said the chemical fumes from my ex-employer----most likely played a role in my initial crash-----(on set of POTS).Dr. Grubb is not sure if my symptoms are from POTS---or the problems I have with my neck and cranial area.A lot to think about...... Julie :0) Quote Link to comment Share on other sites More sharing options...
DancingLight Posted September 24, 2004 Report Share Posted September 24, 2004 hello julie,as promised an email that is not off-topic and about sunless tanner! i just wanted to say, you have really had a lot to process the past few months...a lot to take in.i am sorry that your appt. with dr. grubb did not provide you with a little more insight and helpful tips...that is always so disappointing...to feel like no one knows how to help you. as you know, i have been there! i don't really like being a medical marvel! you really sound like you are feeling miserable. and it sounds like there is other stuff going on in your life right now too...i hope that you will see some brighter days soon. i pulling for you!i know you felt like an idiot today, but maybe it was good that you were having a "bad" day and dr. grubb could see that.what do you think made him decide on the EDS diagnosis this time? did he agree pretty readily? well, that is it for now. i wish i had more words of wisdom but i don't. i just know that i hit one of my lowest lows after an appt. when the doctors said there was nothing to do and i thought, i cannot live like this! so, my heart really goes out to you. is there anything that would be a big treat for you? b/c you seriously deserve it. hugs,and please keep us updated...emily Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted September 24, 2004 Report Share Posted September 24, 2004 Thank's Emily,I don't know what made Dr. Grubb agree with the EDS diagnosis that Dr. Bolognese gave me. He just said the EDS can contribute or even cause a lot of the problems I am having with my upper spine---and it will eventually affect other parts of my spine as well as my joints.I am definately depressed, but not to the point of not functioning. I refuse to get to that point although I times I feel pretty close.Mostly, i'm confused as to what is causing what. So for now i'm just going to go with the cervical traction I started two nights ago. It's too soon to tell if it helps. It seems I have more pain even with the traction. And the constant vibration sounds are still in my ears. I heard that could be because of blocked CSF flow.Anyway, thanks for your support-----I appreciate it more then you know.Julie :0) Quote Link to comment Share on other sites More sharing options...
Guest GayleP Posted September 24, 2004 Report Share Posted September 24, 2004 Julie,I also wanted to add again that I'm sorry about your appointent with Grubb. It makes it all the more confusing when you have a lot of different things that could be causing your problems.tIf you have any questions about the traction ( If there is any pain involved with it) you might want to call Katherine again. She did the traction for several months before her surgery with Bolognaise. You can e mail me if you need her number again. I know she'd be happy to talk to you. gpikna@msn.comGayleP Quote Link to comment Share on other sites More sharing options...
Guest Julia59 Posted September 24, 2004 Report Share Posted September 24, 2004 Thanks Gayle,You and I are on the same page. I was actually thinking about calling Catherine. I talk with her today about the traction. I told her it has only been two days, and I am having a lot of pain. It's hard to tell if it's the same pain---it feels a little different. Kind of like a charlie horse pain inside my lower head. Difficult to talk with out having spasms. I also have more ear-ache pain. And the humming/buzzing sounds in my ears seem more often.Catherine said if I have continued pain to call Dr. Bolognese. I'm going to give it a few more days---unless the pain gets more pronounced.I'm just going to rool with it for a short while---and i'll call Dr. Bolognese if I continue to have increased pain and neuro symptoms. I'll keep you updated..... Julie :0) Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 24, 2004 Report Share Posted September 24, 2004 Hi Julia,I am sorry that you did not get all the answers you expected. I understand how hard it is to suffer and not know why and how and what to do to relieve our suffering.On the + side you got confirmed by Dr Grubb that you have EDS. Remember how worried you were about bringing this topic. You made it! I don't know about traction but I know about massage. When we receive a massage it is normal to have some pain after (from 1-5 days). But after 5 days if the pain does not go away there is a problem.Just be careful not to aggravate your neck.Ernie Quote Link to comment Share on other sites More sharing options...
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