venting session...arrh

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venting session...arrh

Postby Damelza » Tue Aug 09, 2011 3:12 am

I feel like screaming, crying and pulling my hair out!...I really could just explode with frustration at the moment.

I have syringomyelia, no chiari. my cysts are at C4-7 2x1.4mm at the level of mid C6 vertebra. Also at T3-T5 3cm in length, maximal dimensions are 4x3.9mm. I really don't know what that all means, but they are there.

After 4+ months of being symptom free I have recently had a relapse. I feel like no ones wants to blame syringomyelia. My neurologist, which I haven't seen for several months thinks it's all in my head, my Neurosurgeon who I also haven't seen for several months thinks the syrinxs are too small to cause any symptoms. Most upsetting of all is my husbands opinion. I had a parasitic infection last year and he thinks that's at the root of all my health issues because I don't look after myself. I'm 159 and 80kgs and I don't exercise...I'm allergic to it! I agree that I'm overweight but I'm no couch potato.

It's all so frustrating, I feel like my world has collapsed around me in the space of a few weeks. Once the kids are all grown up I really can't see him hanging around. I think I'd rather be on my own than have to be something that I'm not.

Thanks for taking the time to read.

Danielle x
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Re: venting session...arrh

Postby phyrehawke » Tue Aug 16, 2011 9:49 am

Maybe you should gently but frequently remind your doctors that just because a syrinx is not at the 5mm width that warrants surgery...that does NOT mean it's necessarily asymptomatic. I also have a long narrow cervical post-traumatic syrinx, and I've had it for a long time...24 yrs. My syrinx width is stable but it still causes flares.
Although do keep in mind that a syrinx is not always the cause of symptoms, and if you are having new ones other reasons should be explored. The syrinx can't be "cured" but things like parasitic infections usually can be. So if a reoccurance of the parasitic infection MIGHT be the problem, it's worth checking out.
Rozanne/phyre
"A path of awakening would never suggest that we should be a passive and unwitting spectator of our own repeated disasters, but should turn the power of our attention to untangle the web of complexity." Christina Feldman
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Re: venting session...arrh

Postby pseudotumor » Sun Aug 21, 2011 1:01 pm

When you're suffering from a chronic illness or even just chronic symptoms it's really important to have a good support system, which your doctors and husband are obviously not. I totally get it. I don't have a lot of friends, and the ones I do have are often too busy for me. I recently had pfd surgery 2 weeks ago and so I take a lot of meds and rest a lot. My husband calls this me being 'addicted to pain killers' and 'lazy'. :( Certain people will just never get it and don't have the power to be sympathetic. :( If you have friends or family who are more understanding I would recommend getting support from them. And as far as the doctors go, ** em', go find new doctors with open minds. :wink:
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Re: venting session...arrh

Postby tennesseewalker » Fri Sep 02, 2011 4:26 pm

My DH was of the opinion that my arm pain would go away if I exercised it. I have RSD and movement makes it worse. He drove me to a specialist 100 miles away and in the exam room he told the doctor "she babys it". The doc looked him in the eye and said "it hurts". That was the lightbulb moment for him. He just needed to hear it from the doctor, man to man.

Gentle hugs.
Mary
Genetic CM/SM (me, my son, my twin sister and both of her daughters), RSD of right arm.
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Re: venting session...arrh

Postby powerlineman » Thu Oct 27, 2011 7:20 pm

I've heard it all just like you have. I recently told my wife if she can't accept what I say then I'll leave. That simple. If I say it, I mean it when it comes to my pain and symptoms.

Just do like I've done and tell the docs off. I REFUSE to let a doctor tell me I'm not hurting. I had one tell me "everybody has those (talking about a syrinx) and just take Advil for it, and you'll be ok". I'm on Opana and even it doesn't take the pain away. That doctor didn't see a dime of my money and never will. He's supposed to be a world-renown NS in Birmingham Alabama at UAB (University of Alabama-Birmingham Hospital). I'll have to search his name and tell all so nobody would see the punk.

Don't let them make you think you ARE crazy because you're not. My syrinx in my Cervical-Thoracic areas is only 4mm and it causes a TON OF PAIN, muscle spasms, loss of feeling in my right foot, you name it. I find it funny these Neuros/NS can think that only a 4mm syrinx CAN'T cause pain. I'd like to see them have that same syrinx inside their spinal chord and see what it feels like then hear them "whine" all day about hurting and having problems so I can say "told you so punk". If the doctor refuses to believe you then find another and give him your money and insurance money. A doctor that treats us like crap and refuses to believe what we say doesn't deserve a dime from us, PERIOD!
SM only (C2-T1, T10-T12)-Cervical Post Operative Radiculopathy-Degenerative Disc Disease-Anxiety-Depression-Chronic Fatigue-Osteoarthritis-Bulging Discs (T5-T7)-Sarcoidosis-Spina Bifida
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Re: venting session...arrh

Postby Beverley » Fri Oct 28, 2011 12:06 pm

I have to agree with the othe person hearing from the Doctor themselves. Male or female it doesn't matter really. People that do not have this kind of Chronic conidiont cannot understand the pain it causes. My husband was the same way. He went with me to the Neurologist and said something along the lines of me being a whim and someone who had a low tollerance for pain... My NL just said, No I don't believe that. I think she has an extremely high tolerance for pain. He said that what I have a extrememly painful. If was referring more to my Dystonia than the Chiari and Syrnx but I wish I had a video of my Husband. His jaw dropped, he thought he was going to get this doctor on his side. lol

The Doctor went on to explain my conditions to him in general terms and said Most people that have what I have take many pain meds to help with the pain. He knows I have pain but I have to stear clear of pain meds because of the side affect I get from them. He then told him that most likely I was not going ot wake up one day and be better. There would be ups and downs but they could not just take my problem out like you can with a Apppendix or Galbladder...

My husband has been much better since but he still relapes. He his a pinched nerve in his lower back so he feels like I am not helpful to him and the pain he has. So he has to get his two cents in now and again but the doctor telling him had a great affect.

It really is hard for others to understand. It seems so logical that exercise would help, or just doing the everyday things that most people use to help with pain ect... It is difficult to think that Two aspirn and some exercise will fix everthing...
Decompression Surgery Feb 8, 2008 w/Duraplasty & Laminectomy C-1&2
Cervical Disc Fusion 11/08 C5&6/6&7- Mild Disc Bulge L2-Focal Hemangioma
L2-L5-Lipoma 3mm L4&L5-Disc Bulge T11&T12-DDD
Dopa-Responsive Dystonia (DRD)
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