2 Years Today Post SAH - Left With Chronic Pain (Hip & Head)

Has anyone else out there been left with hip pain that they didn't have prior to the SAH? And if so does anyone know what causes it?

Hi,

Its two years today since I had two aneurysms rupture out of the blue.

One was a wide necked, the other a narrow necked and I bled both sides of the brain. They were both coiled.

I was warned I would have head pain and back pain for approximately six months (the back pain being caused by the spinal fluids being contaminated by the bleed).

Two years on, I still have blinding head pain which I take Oxycontin 20mgs which I don't get any side effects from and all is good there, it doesn't do anything to help the back pain. The back pain slowly moved into my left hip over a period of 12 months and has been very intense ever since. I take 75mg Lyrica (Pregbalin) in the morning and 150mg Lyrica at night to help. When i was taking 150mg in the morning instead of 75mg, it was helping with the hip pain but after a while it gave me visual disturbances and daily migraines with visual loss (apparently a side effect of the Lyrica). (Thats why I dropped it down to 75mg).

Unfortunately the Lyrica is no longer touching the hip pain and I'm feeling pretty miserable with the constant pain again.

Has anyone else out there been left with hip pain that they didn't have prior to the SAH? I've had an MRI of my lower back and they say it all looks good (based on the idea that pain in the hip is not actually from the hip it is from nerve problems in the lower back).

I'm going back to see my pain specialist on Friday and really want her to organise an MRI of my hip but I know she'll say no, that the pain is coming from my back. Getting desperate - two years on and as miserable as hell that its not under control.

Thanks for listening :)

I wish I could be of help...~

Thanks Collen :slight_smile:

hi Kmmy! yes this sah has lots of lasting effects-my whole left side ,bottoms of feet are my biggest gripe and hip is a close second. i am 4 yrs post and wish i could give you encouragement and hope- if anything improves i'll definitely let you know. Think positive tho- that's all we can do. God bless you and yours- i'll keep you in thoughts and prayers~oh the cause is the bleeding in the brain- i know it doesn't make sense but that's what they say!

Hi, so sorry you are experiencing persistent hip pain. I am 1 year post aSAH. Had terribly painful head, entire spine and hip pain for several months. Fortunately, this has resolved. I do still have daily headaches (ugh!). I am sure you know the feeling. No history of migraines before the rupture, but very painful often debilitating headaches now. So painful and frustrating. So blessed to be a survivor, but hate headaches everyday. :,(
I hope you can get some relief. Sounds like the cause of the pain we experience is the same; the irritation to the nerve endings from the hemorrhage. Will keep you in my thoughts and prayers. =)

Hi Ron, it is so frustrating isn’t it? We are blessed to be survivors but are unable to really enjoy this second chance to its full capability because of the tiring chronic pain. Thank you :slight_smile:

Hi Teresa, sorry to hear you are suffering too. I get the migraines too. Did your hip pain just go or are you on pain relief for it? Has your specialist admitted the pain is due to the bleed? What do they recommend to do about it? Thank you for your kindness. Best wishes, take care :slight_smile:

Hi Ron, when you say your whole left side, do you mean pain in your whole left side? Do you take pain relief or have they done investigations? :slight_smile:

Kimmy,

Wow, it is hard to imagine both your aneurysms ruptured/bled at the same time...?...Were you in some accident bumping your head or?

Yes, I had pain in the lumbar spine area...I use the activator (light touch) chiropractic care...also used craniosacral therapy and regular massage...

My second day in rehab in gait therapy, I had a "collision"..."too aphasic to explain" to the therapist what hurt...but he noted the piriformis muscle...I'd not have been able to say piriformis, let alone muscle. Other records noted the severe bruising...next day x-rays were taken of lumbar spine...much more to the story... family was not told of any of it...including the x-rays...

Lumbar puncture (spinal tap) is done thru that lower area of the spine...If that was done, your pain specialist has your records...?... Did your docs re-check your spinal fluid for its clearance?

Then, somehow, in tangled memory of angios, we get tied to the table in a position needed for the minimally invasive coiling... and, whatever effect that has on the spine???

Strange how the hip is attached to our spine...that area also has the sciatic nerve...somehow relates to the piriformis, etc...When I broke out in Shingle's some years later, it was thru the sciatic down the hip/leg...

Wishing you the best results Friday

Pat

hi kimmy!--whole left side Is numb and doesn'i function properly- no fine motor control, stiffness.The pain is n left foot and ankle and some n hip. I was on Nuerotin for nerve pain but it didn't help so family dr tried doubling dose - still nothing so we stopped, its a numbing pain like when you sit cross legged on the floor too long. Anyway I hope your improving~~ see you around!

Hi Kimmy. The hip pain resolved over time. Yes, the doc said the hemorrhage is the cause of my headaches since the subarachnoid space is only a few millimeters wide. The blood evidently irritates the nerve endings. Even though the bleed is not active, I guess the blood clots and continues to be an irritant.
I have tired many treatment options, without success so far. Several different high blood pressure meds (even though I don’t have high blood pressure). The goal is to constrict or narrow the blood vessels with the intent to reduce headaches. Kinda the same action as the migraine meds (Imitrex and Relpax). Also tried antiepileptic meds (never had a seizure, either). To be honest, I am not sure of the mechanism of action. No success here, either. The most recent, treatment was Botox injections, yep the stuff for wrinkles. Just over 30 injections in the scalp, neck and upper shoulders to cause temporary muscle paralysis (in case there was a muscle tension component to the headaches). Sounds awful, but really not too bad. You know how it is, when you have pain you will do anything to alleviate it. I am 1 week post rupture and hemorrhage, so I am hopeful that time will reduce the headaches. If you have had any different treatment options, Please let me know. Best wishes to you too!

Hi Pat,
No, I didn’t bump my head. I was sawing a tree branch in the garden and suddenly felt this intense pulsating sensation in my skull and then intense pressure followed by the intense pain. Had a CT at the local hospital and was told I had bled both sides and was taken to Perth, WA where they confirmed both had ruptured and they coiled them.
I found out on Friday that I have lumbar arachnoiditis from the spinal fluid contamination and they have started me on cymbalta together with lyrica to see if that gives some relief.
Does anyone out there know much about this condition?
Regards
Kim

Kimmy,

Wow, it is hard to imagine two rupturing at the same time...in both sides...

Was/were lumbar punctures (spinal tap) done before or after the angio/coiling? The results of mine were quite different...

Did they explain if the contamination was from the contrast dye entering your blood stream and getting into the CSF?

Do suggest you search the 'net...NINDS frequently has good info...may help you w/more questions to ask your doc...

Prayers for good results...

Pat